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Hi All,
I should start my treatment with Esbriet as early as this afternoon and I am concerned that I won’t be able to tolerate it. Can anyone share their initial experience – good or bad – and provide some tips that proved sucessful? Also, did it take about 3 months for the side effects to go away as Esbriet claims?
Shaw
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Hi Shaw,
Thank you so much for posting this topic. What a great post! I actually never was on Esbriet, when my disease progressed to the point of needing an anti-fibrotic medication, I actually started right away with Ofev. I do have a friend who received his transplant in December 2015 but was on Esbriet until he received his new lungs. I can connect with him directly about this if you’d like? He is wonderful and dedicates a lot of his time to helping support other patients, including myself, with IPF. I can email him your question and get his response back to you, if this would be helpful? He is not yet a part of the forums but I know he is going to sign up when he can. In the meantime, I could ask him and get back to you… let me know if you’d like me to do that.
We have also taken your question and boosted it (anonymously) to our social media pages and I’ll keep an eye on the responses and post them back to you here. I know it is so helpful to receive information from others, so I’d be happy to help with this. Sorry I can’t share my own experience with you.
Thanks so much again for posting and goodluck with it. Please let us know how you make out.
Sincerely, Charlene.
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Hi Shaw. Just a quick note on my experiences on taking Esbriet. I think that there was a tremendous amount of support from an organization called ‘Inspiration’, based out of Ottawa, Canada for we Canadians. The nurses in the program were sure to phone me and talk me through how to begin taking the medication, one pill – three times a day for the first week, and being sure to take them with food. Otherwise there could be stomach issues. (I don’t need to be told that twice). I never had stomach issues and that may be why… I am one of those people who could easily come down with some or all of the contraindications that they warn about, so I didn’t bother to read the pages of things that COULD happen while taking Esbriet and decided to just mark down those situations that I did have happen. Other than some indigestion if and when I took the three pills (beginning the 3rd week) too close together without food in between then I had suffered from that. Not often and tums and rolaids managed to keep me well. I found a hot drink didn’t really help a lot, better to have a cold one. If I took the hot drink too close after the pill then it kind of melted the capsule and it did cause some indigestion. Not a cold drink though. Other than that no real problems. I have even had a rum and coke some evenings, or a glass of wine. Not a problem with that either, except my ears turn bright red and I have a bit of {global warming} flushing. That sometimes happens after I get into bed also, but only after a glass of wine or r & c. I hope you have a good time and feeling that the Esbriet helps you. I believe it has helped me.
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Hi Joyce,
Thanks for sharing your experience with starting Esbriet with so much detail. I know it will help others if they read this thread in future, about starting this medication. I know your message was for Shaw, but just a quick question for you…. how did you hear about the ‘inspiration’ organization in Ottawa? Is that where your treatment is (so sorry if you’ve told me this already and I’ve forgotten) or is it information you obtained from the Canadian Pulmonary Fibrosis Foundation? I’d love to just keep this in mind for other Canadians looking for more information on starting Esbriet, but don’t want to unintentionally point them in a wrong direction.
Thanks in advance for sharing!
Charlene. -
Hi Joyce and all other commenters on this subject.
Thanks for the information regarding Esbriet. I just received the medication and will start taking by the end of the week. My doctor gave me the impression the side effects were pretty bad by ticking them all off and giving me the impression I would have them all.
Thanks again for helping to put my mind at ease.
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Goodluck with starting your Esbriet this week Michael. I hope it goes as smoothe for you as some of our other forum members, and that the doctors side effect warnings were just precautionary. Hope you make out okay, and please reach out if you have any questions/concerns with the medication, lots of people are on it (I’m on OFEV, not Esbriet) and I know they would be willing to help you if they can.
Take care,
Charlene
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Hi Shaw,
I hope your second support group is going well. As promised, I just wanted to share with you a comment that was responded to after we annonymously posted your questions about others’ experience with taking Esbriet. Here is a response from Joyce:
“ I have been taking Esbriet since first of December 2017, I am now on maintenance dosage (9 pills daily). I too was very concerned that my body would not accept the dosage but found if I eat meals and space them 6-7 hours apart I do not have problems. Not realizing I needed to space the dosage about 7 hours apart with 30 min on either side, I took two dosages within 2-3 hours of each other, but only had to do it once to learn. I was very sick with vomiting, heart burn and inability to sleep. Now I’m looking forward to another CT and see if Esbriet has slowed the progression. Also, completed pulmonary rehab, not only do I feel better from going through the program but learned a lot too. Hopefully your experience (not counting my one goof) will be as good as mine. Good luck!”
Hope this helps a bit 🙂
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Hi Shaw,
Here are some more wonderful responses to your earlier question(s) about others’ experience with Esbriet that we anonymously posted to see if folks would answer. I’ve copied and pasted them below for you. I hope this helps! Did you end up starting on it today?
Marilyn wrote: “I’ve been on Esbriet almost three years in June, started with 9 aday with a cracker every eight hours, this is working for me, my lungs haven’t gotten worse, I don’t need oxygen during the day, only at night when sleeping, this drug is working for me, my air has been set on 3 all this time since I started, it’s wonderful”
Ann wrote: “I have been taking Esbriet for 3 years and take 9 pills a day and have remained stable. No oxygen yet. In the beginning I had problems with an upset stomach but by eating half my meal and then taking the Esbriet that has resolved. I also schedule my meals at least 4 hours apart. I also became sun sensitive to the medication and now wear sun gard clothing and hats when out in the sun longer than 10 minutes.Hope this helps”.
Luciane wrote: “My son takes only 6 a day because he could not tolerate it at first. He takes 2 after meals. He is stable”
Betty wrote: I had major heartburn and indigestion with Esbriet. Switched to Ofev and am tolerating it.”
Charlene.
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Hi Shaw,
Here are two more posts from your question regarding Esbriet on our Facebook page (we posted in anonymously). Hope this helps!
Paul wrote: “My doctors never gave me a chance to use it and then six months later I had a double lung transplant. I went downhill quick. Welder!!! Lots of poisonous smoke. every day for 35 years. And grinding Metal dust!!!”
Tammy wrote: “I made it to the 3rd week but I have a rare GI disorder called chronic intestinal pseudo obstruction and Gastroparesis which is basically gut paralysis. Esbriet slows gut motility further so I was having much difficulty with it and had to discontinue it. I was disappointed I couldn’t tolerate it.”.
Charlene.
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Joyce, Marilyn, Ann, Luciane, Betty, Paul, Tammy and Marlene –
Thank you so much for sharing your experiences with Esbriet – good and bad. They have given me the confidence to begin my treatment this morning. I have now taken two pills, both with full meals. If anything I only sense very minor nausea. I suppose it will take a few days or more for my system to fully respond to the meds so I am not assuming that it will be smooth sailing. At least for now, I am feeling ok. I’ll report back in a few days.
BTW did anyone’s side effects subside after three months?
Thanks again,
Shaw
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Hi Shaw,
Thank you so much for connecting back and letting us know how your tolerance of the first few pills has gone. I was thinking about you today, hoping that it went well and was eager to hear from you. I will pray and hope for you that the side effects remain mild and that you don’t experience too much discomfort, nausea, vomiting, etc.
I think it is amazing how responsive people are on this forum, especially if their experience can help someone else so I wanted to ensure everyone hears my: thank you! I feel a lot more comfortable now too knowing that I can post a question here and that likely people will respond with real-life understanding and experiences.
Shaw, how many people ended up being part of the support group you attended, that you were telling me about? I hope it was helpful and the topics were relatable?
Charlene
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My husband has now been on Esbriet for about six months. He hasn’t had any side effects at all. He doesn’t seem to have an appetite in that he doesn’t ‘want’ food but eats it when we fix it. He has however lost about 10 pounds since June. Since we’re new at this whole thing, the advise may not be there from us; in fact, more likely we’ll be asking questions but I’d like to contribute comments when I can.
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Hi Judi,
Thank you so much for joining the PF forums and for your contributions to this topic and discussion. We’re really glad you’re here!
When I first started my anti-fibrotic medication, I also experienced ‘not having any desire to eat’, but I also knew I had to to fuel my body to fight the disease. I am not on Esbriet, but Ofev, although I am always curious to hear about people’s experience with both medications. Would you guess that the weight loss is from not having much of an appetite, or maybe it is a side effect of the drug? Please share if you’re comfortable.
Has your husband had a follow up since the 6 months of him being on Esbriet? Just curious to hear if by comparison it appears to be slowing down the disease progression. Perhaps still too early to tell?
Thanks again for sharing and joining us!
Charlene
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Hi Shaw,
I am new to Esbriet as well. I just began taking it on Feb 4th. I am mid week 2, and taking 2 pills, 3 times per day. I am typically the type of person that if “stomach upset” is a side effect I will most certainly suffer from it. I have been so fortunate I have had zero problems. I always take my medication with a meal and I eat 1/2 of my meal, take med, eat second 1/2 of my meal. I also try and drink a glass of water as well. I am hopeful that as I continue next week to 3 pills 3 times per day that my luck continues and I remain stomach upset free. I have been playing around with how much food to eat and just this morning my breakfast was a banana and a cup of coffee and I did not have any issues.
Wishing you the best of luck!
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Hi Aishia,
Thank you so much for joining the PF forums and for contributing to the discussion on Esbriet by sharing your experiences. I’m really glad to hear that you are currently free of stomach issues that sometimes are expected with this type of medication. I will pray that continues for you!
When you mentioned that you usually have a glass of water with your meal, do you take a full glass of water after taking your pills to wash it down, or do you mean a whole glass of water with your meal? Just curious if a side effect of Esbriet is a terrible taste left in your mouth. Unfortunately, I have a couple medications that leave me with a metallic taste in my mouth that is really hard to get rid of.
If I may ask, do you have IPF or a type of PF with a suspected/known cause? I look forward to getting to know you more and sharing in future discussions that can benefit us both, and hopefully other members of the forum as well.
Cheers,
Charlene
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Hi Charlene,
I am so happy that I have stumbled across the PF forums so early. The reason I take a full glass of water is because once upon a time I was taking a different medication (unrelated to PF) that also had stomach upset as one of it’s major side effects. Drinking a glass of water with it really helped to avoid the stomach issue so I thought I would try it with Esbriet. Typically I eat half my meal, take my med, drink half my water, eat the other half of my meal and finish my water with it.
As far as I know I have IPF. This is a very new diagnosis for me. I was diagnosed with Interstitial Lung Disease in 2015. Just recently (end of December) my pulmonologist has diagnosed me with IPF and referred me to Seattle, to be seen at the UWMC Interstitial Lung Disease Clinic and put me on Esbriet. My appointment is in 2 weeks.
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Hi Aishia,
Thanks so much for clarifying for us how you best take Esbriet, I would imagine your personal experience and sharing will benefit many others on this forum. I am also very glad that you found us so early!
Did you have symptoms of a lung disease before your interstitial lung disease diagnosis in 2015? I’ve been speaking to many individuals (including a colleague, just yesterday actually…) who shared with me that his lung disease was discovered as a result of liver function testing. It was really interesting to hear him talk about not having any symptoms, like shortness of breath etc? This disease really can manifest itself in such different ways for everyone. Do you have any history of lung disease in your family?
Best of luck with your appointments in the upcoming weeks. If you have any questions you want answered or are thinking about, feel free to post them in the forum titled, “Upcoming Medical Appointments: Q&A” as someone may have had the same question as you 🙂
I hope you’re having a great day!
Charlene
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Hi Charlene,
In response to your question about my local support group – the same two people were there. I made three along with the hospital staff that attended. I found out the group started last October so it is still new and just getting started. Surprisingly there are not more IPF attendees. There has to be more of us in the immediate area as there are roughly 2m people in greater Las Vegas.
As I stated in one of my other response, I have now completed my first day of Esbriet and so far all is well.
Shaw
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Hi Shaw,
Thanks for sharing an update on how the support group went. By training, I am a family therapist and the idea of support groups always fascinates me because everyone has such a different concept of what would be helpful in a support group. Things can really vary in a support group, and some questions I like to know about a support group before I consider joining are:
- Is the group facilitated? If so, is it a peer facilitator (ie. another patient) or facilitated by a professional?
- Is it an open group, meaning anyone of all ages can join or is it age-group specific (Ie. young adults, for folks 50+ etc) — this is mainly because discussion topics greatly differ for patients at different stages of their lives, although there are some similarities as well.
- Frequency of the group, ie. is it a monthly or weekly commitment
- What is the geographical catchment area of people attending the group? I like to know this because if it is a group for people within a similar proximity, then is opportunity to then establish social support with people beyond the context of the group.
I am curious if the group is a mandatory requirement or is it optional for people to attend? I have heard of transplant programs in different hospitals that have a mandatory support groups before a patient can be considered eligible. If you would be willing to share, what types of conversations took place in the group (medication related? emotional concerns of patients? etc). Please don’t feel pressure to share if you aren’t comfortable, I respect the context of any support group wanting to remain private.
Thanks again for sharing and I hope your second day of Esbriet is going well for you!
Charlene
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Hi Aisha,
I was diagnosed with Usual Interstitial Pneumonitis on January 23, 2018 and am taking Esbriet, now at the full dosage. I haven’t had any ill effects from it, but make sure to take it with food. My pulmonologist also has referred me to UWMC Interstitial Lung Disease Clinic for additional testing. He and a colleague discussed my case and think I may actually have Non-Specific Interstitial Pneumonitis. I am waiting for the referral to be approved. I hope your appointment is helpful!-
Hi Janis,
Thanks for your post and contributing to this thread about Esbriet. I’m so glad to hear that you haven’t had any side effects on this drug, I will pray that this continues for you! Do you feel like it has helped you at all since starting it? I know you were put on it in January so may not have a long time to compare it to, but just curious as to whether or not you’re noticing a difference. It sounds like you and Aishia might have lots to chat about after her appointment, including being at the same facility! I’ve heard amazing success stories come out of UWMC and I hope you both are within those stories too 🙂 … wish we all lived closer together!
Keep in touch Janis and wish you nothing but the best with your upcoming appointment at UWMC. Let us know how it goes if you’d like…
Cheers,
Charlene
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Hi Aishia,
Thanks for your helpful tips. For now I am eating more food than usual – half a meal, then the pill, then the 2nd half. I am also drinking water. I think that once I get to 9 pills a day, assuming I can tolerate 6 then 9 a day, I will see if I can cut back on food. Your banana and coffee breakfast sounds promising.
Thanks again,
Shaw
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Hi Shaw and Aishia,
I am just curious about the increase in anti-fibrotic medications, and whether the process is the same for Esbriet and Ofev. Is there a standard time frame for patients to take a certain amount of pills (ie. 2 pills, 3x per day, to build their tolerance) before increasing it, or does it vary from patient to patient?
Thanks in advance for sharing this info!
Charlene
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Thank you for sharing Aishia, I am sure members taking Esbriet (especially those who are new to taking it) will really benefit from your post. It does sound similar to the process of building a tolerance for Ofev, although I am sure each medication regimen is tailored to the individual patient too.
Thanks again for sharing.
I am hoping Shaw is tolerating the medication okay, I’ve been thinking of him!
Charlene
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Hi Charlene,
Thanks for providing information and enabling information from IPF individuals to be shared.
I was diagnosed with IPF in December 2017 after CT/PET scan was performed after 6 months of chemo treatment for recurrent prostate cancer. While the scans showed that the cancer was under control, it showed several other problems: CAD, nodules on the thyroid and fibrosis of the lung. IPF was confirmed by my Pulmonolgist with a follow-up high resolution CAT scan.
I will be starting Esbriet when it arrives. My initial concern is digestive tolerance and tolerance to sunlight. I have a good friend who was diagnosed with IPF a few years ago who was put on Esbriet about 6 months ago. He has not experienced any side effects.
One additional note – after a comprehensive evaluation by my cardiologist, he recommended that I read “The End of Heart Disease,” by Dr. Joel Fuhrman. After reading this book I have adopted his Nutritarian diet which calls for obtaining most of your nutrients from plants rather than animal sources. I wonder if anyone with IPF is following a primarily vegetarian/vegan diet. The diet reduces inflammation associated with coronary artery disease (CAD). I wonder if it has benefits for IPF patients.
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Hi Alfred,
Thanks so much for joining the PF forums and contributing to this conversation thread… we’re glad to have you!
I am so sorry to hear of your diagnosis this past December. I always find it harder to hear stories of an IPF diagnosis as secondary to cancer treatment, because PF seems so unfair as it is but to develop as a result of the necessary treatment for another disease is just cruel. Another friend of mine has PF secondary to chemotherapy too. Are you located in the US Alfred? Just curious 🙂
I hope your experience will be similar to your friends’ whereby you don’t have any unpleasant side effects. Based on this forum thread and hearing of others’ experiences, it sounds like the best thing to do is to ensure it is taken with a hearty meal. One person mentioned taking half their dose, eating half their meal, then taking the other half of their Esbriet and finishing their meal with lots of water. I’m not sure of the sunlight concern, but this is something I have to be mindful on OFEV, so it makes sense that it would apply. Can anyone else comment on how sunlight exposure is impacted by Esbriet for Alfred? Let us know how you are managing on it Alfred, when you start. Shaw has had a positive experience with Esbriet so far I believe too….
I am really interested in picking up a copy of this book Alfred, as I know how important heart health is especially with a lung disease. Has your Doctor ever mentioned testing you for Pulmonary Hypertension? I get checked for this annually due to having IPF. Reducing inflammation is so important for me as my cRP levels were very high on my last autoimmune blood work up, meaning the inflammation is high in my body. I primarily eat only chicken and turkey for meats, very little red meat and a lot of fruit and veggies (I get most of my fruit intake through fresh juicing actually…) but think I’ll take a look at this book, thank you for sharing!
Chat soon and feel free to connect any time.
Warmly,
Charlene -
Charlene, thanks for your prompt response to my post. It is so important to ones psychological well being to know that others with a similar affliction care.
I live in North Jersey. Before my diagnosis I had never heard of IPF. Being that it is so rare, I’m astonished that my friend, who lives in the same town, is afflicted by the same condition. Although the “I” in IPF stands for idiopathic, his care is being managed by the fund set up for first responders of the September 2001 incident at the World Trade Center. In his case the condition was probably due – at least in part – to breathing in toxins while he was working in that area.
On my next visit to the Pulmonolgist I’ll ask about pulmonary hypertension. Let me say that I am feeling well at this point. I walk for about 45 minutes at least 5 days a week, with no shortness of breath. With incorporation of a healthier diet, recommended medications, exercise and emotional support from family and friends I plan to have a good quality of life throughout my retirement.
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Hi Alfred,
Thanks so much for your reply! I agree, it certainly is comforting to know that others’ who truly understand what it is like to be living with IPF are available and care. I’ve found a lot of comfort and support on these new forums already, and I hope you find this as well.
With regards to your friend, it is so interesting (although I wish for him he wasn’t experiencing IPF) you mention that his disease could have been caused in part by responding to the attack on the World Trade Center. I say that because this past December, I flew to NYC with two friends of mine, oxygen in tow, to celebrate my 30th birthday and while were there we did the 9/11 museum. As I was watching the videos and seeing all the dust on the artifacts that were being preserved, I silently thought to myself, “I wonder how many first responders developed PF from this, or similar lung diseases”. I didn’t share my thoughts with my two friends, and I am sad to hear of your friend developing this disease after responding so heroically on that day. He will be in my thoughts and prayers!
It is so refreshing to hear how well you are doing as well, thank you for sharing that and I hope you are able to maintain this level of activity – 45 minutes of walking 5x per week is amazing! Have you done a 6 minute walk test? Your oxygen levels must stay pretty steady during that in order to be able to exercise as much as you are, which is great news! I look forward to getting to know you more and hearing about all your retirement adventures 🙂
Cheers,
Charlene
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Charlene,
My friend was not actually a first responder. He was working in the ground zero area for the gas/electric company during the massive clean-up period. I had another very good childhood friend (deceased) who was on his 2nd day on the job as a National Park Ranger, assigned to Battery Park. He saw the 2nd plane hit the World Trade tower. He assisted many people away from the area. Several years ago he passed away from esophageal cancer.
I will never forget that day. My wife was having a colonoscopy. I was in the waiting area watching the events unfolding on TV. It was as if I was watching a devastation movie not actual events. From where I live I can see lower Manhattan. The buildings smoldered for 3 weeks. I also visited the area with my Australian cousins a few weeks before the museum opened.
I did the 6 minute walk and a breathing test following my diagnosis. This provides a baseline for future evaluation. I also had a cardiac stress test which lasted about 6 minutes. I did well on both without shortness of breath. When asked if I experience shortness of breath, I really did not know how to respond. I remember last Spring when I was cutting my lawn that I became quite fatigued and had to stop several times before continuing. I guess this was the first sign that something was amiss, but I attributed it to getting old. I’ll be 70 on my next birthday. This was also before my recurrent prostate cancer was diagnosed. Subsequently I assumed that my fatigue was caused by the return of cancer. If I didn’t have the scans following chemo, I would not have suspected lung disease.
I suppose that I am much more fortunate being diagnosed with IPF at this stage of life rather than those diagnosed in the prime of life.
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Hi Alfred,
It’s nice to hear from you and thanks for your reply! I appreciate hearing the stories of your friends and their connection to the WTC… I think both of them are very heroic still, even the folks who were responsible for the cleanup of the attacks at ground zero. I remember visiting in February of 2002, of course just a few months after the attacks and being able to still see the smoke in the air from the towers’ collapse. I can’t imagine their experiences and the emotions of that day (even for you, actually, for all Americans…) and to know that they both ended up with serious illnesses is heartbreaking, even if it is unrelated to the attacks. I still think about that day often, even as a Canadian and the museum and tribute pools were very touching to see when I was in NYC this past December. The way they honoured every single person who died that day by telling their individual stories in the museum was very touching. I bet the lower Manhattan skyline has drastically changed for you, from having the two towers beam into the night before the attacks, to an empty space where they stood and now having the Freedom tower standing there?
I am glad to hear you did well on all the physical testing for your IPF diagnosis, including the stress test. I had a really hard time with the stress test, both was short of breath I think because of my disease but I was also so anxious as they continued to increase the speed of the treadmill. I tried without oxygen at first and it was terrible, so I was put on oxygen (this was before I had it at home) and my sats dramatically improved. The stress test still makes me shutter a bit because it was such a hard test for me. If I may ask, did you notice one symptom before the other (ie. shortness of breath before fatigue, or other way around)? I didn’t notice the fatigue at first, just the shortness of breath but now I really feel plagued by fatigue and find it difficult to manage, especially when trying to keep up with my friends who are in their early 30s… I just can’t do it anymore, and I’m only 30!
I hope your prostate cancer is in remission and I will continue to hope and pray for this for you!
Take care,
Charlene
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Hi Janis,
So nice to meet you. I had my appointment up at UWMC last Friday and it was pretty amazing. Dr. says I do not have IPF, but rather NSIP auto immune related. I am still tasking Esbriet with no side effects (thank goodness) and am now taking Mycophenelate and Prednisone. Thank you for joining this forum and please keep us informed on your appointment and how you are doing. <3
Smiles~
Aishia
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Aishia, I find myself jealous that there is potential you could overlap and cross paths in person with Janis at UWMC! Do you know if they offer any type of young adult support group through there for people with ILDs? I know they treat quite a few as I am part of some social media sites of young adults receiving their lung transplants there so I would imagine they have enough patients to consider something like this? A support group for young adults would be so helpful, as I just don’t relate to a lot of the issues that most patients with IPF have, since I/(we) are so much younger than most. Would be awesome to find a group through UWMC if they had one. Do you think this would be helpful for you? I know not everyone would find this helpful like I would…
Curious to hear your thoughts!
Charlene
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Hi Aishia,
It’s so nice to meet you. I wonder if my diagnosis will also be changed to NSIP? You didn’t have to undergo a lung biopsy? My pulmonologist told me that I will probably have to have one.
Just knowing that you have been to UWMC and feel like you received great care makes me feel more confident.
Do you live in the Seattle area? I live south of Olympia.
Thanks for the warm welcome! 🙂
Janis -
Hi Charlene,
Right now it’s hard for me to gauge how much Esbriet might be helping, Unfortunately, I am suffering from a cold. 🙁 Thinking (hopefully) I may have turned a corner and have begun improving. 🙂
I am hopeful that Aishia and I may become great supports for one another, we do seem to have a lot in common. I wish we all lived close together, too.
I am new at posting in these forums, so if I am not following any guidelines or norms, please let me know
Thanks for your response!
Janis-
Hi Janis,
Thank you so much for your reply, although I am so sorry to hear you have a cold. I am just getting over a respiratory infection as well, which are pain in the necks for people without a lung condition, so with one they are terrible. I hope you are on the mend soon, and as you say, hope that you have begun to improve. 🙂
Yes, wouldn’t that be great, to have someone in close proximity where you can be of support to one another. I’ve only “met” Aishia through the forums, and she seems lovely! It’s neat that your treatment centres overlap through UWMC too, lots to chat about even with that. Let’s all keep in touch.
No worries re: the guidelines for the forums, there aren’t many to follow actually. I’m just moderating that everyone is contributing credible, helpful information and are being of support to one another. If you can think of any topics you’d like me to write about and/or research to post here, please let me know.
Thanks,
Charlene -
Janis,
Hello again. Sorry I have been MIA all weekend the weather was too beautiful here in Oregon. I am so sorry you have a cold but I hope you are on the mend now. No Dr. Raghu @ UWMC did not want to do a lung biopsy now because he felt it wasn’t worth the risk. He said based off my history and signs and symptoms he was confident I do not have IPF but rather NSIP. May I ask about you? Are you married, children, age, career, hobbies, loves, hates?? Please do not answer anything you aren’t comfortable with I promise not to be offended. Honestly I just want to know people not just their disease. I mean we are so much more that our lungs, right?
Chat soon
Smiles~
Aishia
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Hi Aishia,
I know your questions were directed to Janis and getting to know her a bit better, but I had to comment as I love what you said about us being more than our lungs! I couldn’t agree more! Sometimes I think people forget, especially hospital personnel sometimes, that we are so much more than our lung disease. I actually wrote a column about this once, as I feared my identity as an IPF patient was taking over my identity as a human and I hated that. Here is the column: https://pulmonaryfibrosisnews.com/2017/12/18/pf-is-not-only-me-i-have-many-cherished-identities/
Thanks again for reiterating this… we are so much more than our lungs 🙂
Have a great day!
Charlene
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Hi Aishia
Thanks, I am feeling a lot better tonight. It was the first time being sick since being diagnosed and I wasn’t sure what to expect. Luckily, not too bad, just a regular cold. 🙂
I am 56 and divorced, and I have one grown son, Michael, who is 31. He has a wonderful girlfriend, Amber, who has a little 9-year-old girl, Aubree. Love them to bits. I’ve been disabled for a number of years due to other health problems aside from UIP? NSIP?, which I was diagnosed with in January after having pneumonia for 5 weeks. My dad and brother both passed away from asbestosis, so there is apparently a genetic factor in my illness. I worked as an Executive Assistant for a low-income housing agency most recently. I like to garden and crochet and love the beach. I have four Pekingese, they are my babies. Three of the four are rescues.
The weather was beautiful today here, too. I am happy you were able to get out and enjoy it. Tomorrow our temperature is forecast to be 70+ :O
Tell me more about yourself. I am so happy to get to know you, and yes, we are so much more than just our diagnoses.
Janis xoxo-
Hi Janis,
Thank you for sharing more about yourself, it is so great getting to know folks through this forum! What a beautiful name Aubree, she and her Mom seem lucky to have you and Michael in their lives. 🙂
Was anyone ever able to link the asbestosis that your Dad and brother experienced to anything environmental, or they suspect it is genetic? I’m just curious about this as everyone’s experience with lung diseases seem so drastically different.
I also love the beach, and am jealous of the weather that you’re both experiencing right now. As I look out my window, I am watching constant, thick snowflakes fall softly to the ground. It is pretty, although I don’t appreciate the cold that comes with it.
Hope you’r both having a great day!
Charlene.-
Hi Charlene,
My dad worked in the shipyards during WWII and was exposed to a lot of asbestos. My brother, we are not so sure. He worked in wood mills and a pulp mill, so he was exposed to wood dust and chlorine. Also, not sure about mine, I worked near blueprint machines, which use ammonia, for 7 or so years. I’ve seen some conflicting information about statins, which I have taken for 10+ years. My primary care doctor really sat up and took notice when I told him about family history, he wasn’t seriously considering pulmonary fibrosis. He decided to refer me to my pulmonologist and further testing confirmed my diagnosis.
I love to watch it snow, but not keen on driving in it! We don’t get much here and everyone kind of freaks out about driving! lol I hope you are all tucked in, nice and cozy! <3
Janis xoxo -
Hi Janis,
Thank you so much for sharing your experience with getting diagnosed, as well as the career / jobs that your Dad and brother had. I really wouldn’t have known or thought about blueprint machines and giving off ammonia but something to be wary of for others reading this thread. I often think about the many different jobs/careers that could unknowingly contribute to a lung disease due to toxins, chemicals, particles of dust, etc., especially in light of the article that was just released about a surge in dentists and dental assistants coming down with PF. I was sharing earlier that not too long ago I drove past a construction zone and as I was parked at a red light I was watching some of the workers dig some form of operating equipment into concrete and they weren’t wearing masks as the dust seemed to come back in their face. While they may have made the choice not to wear the proper protective equipment, I found myself feeling sad for them and thinking “if you only knew how hard it is living with a lung disease”. I actually wrote a column about this, as it got me thinking about other potential careers/jobs that could unknowingly expose people to factors dangerous to their lung health.
With regards to the statins, if I may ask: were these prescribed to you over the 10+ year for other suspected health issues Janis? I know many people are on them, so I am just curious about learning more but please only answer what you’re comfortable with. Eventually with your diagnosis Janis, would you be eligible for a lung transplant?
Yes, the snow certainly can be beautiful to watch, I do agree! The last couple of days it has been really pretty snow – thick, white flakes that aren’t sticking to the ground so not making a mess, just making it a bit pesky to drive in. I do admit though that I am now ready for spring! 🙂
I hope you’ve had a great day!
Charlene -
Hi Charlotte,
I have been prescribed statins because of two heart attacks. My family history is terrible, with my three brothers also affected. One brother had a massive heart attack and died at 36. My two other brothers had bypass surgeries. One passed away from the heart disease and the other from asbestosis. I have had several angioplasties and have eight stents. I also have insulin dependent Type II diabetes, among other illnesses. Oh, and I do have two auto-immune diseases – Celiac disease and Hashimoto’s thyroiditis. I am not compliant with my celiac diet but plan on asking my doctor if that would impact my UIP. I think it might because it probably affects inflammation. I doubt that considering my health history, I would ever be considered for a lung transplant.
I was also diagnosed with Vitamin D deficiency many years ago, and took the mega dose for 12 weeks, I believe. I take 5000 IU of Vitamin D per day.
How fun that you, Aishia and I all enjoy pets so much! You have a sweetheart of a breed, too! <3
Hope you have a wonderful Wednesday!
Janis -
Hi Janis,
Thank you so much for sharing, although I am so sorry to hear of such a health history with your family, particularly your siblings. That must have been so hard, losing your brothers… you are such a strong and brave woman! I am thankful for your survival of the heart attacks you had as well, how scary those must have been for you. Were those recent, if I may ask?
I would be curious too about how celiac might impact UIP, especially if it causes inflammation, which is often something we struggle with in our lungs. I know last year I really struggled with this and had to take a combination of a chemo-like drug (Cyclophosphamide) and prednisone together in high-doses to bring down the inflammation. Although it did work, the protocol was really hard for me to get through. Will you let us know what your Doctor says?
So interesting that you also have a vitamin D deficiency. I did some reading on that today, from the article that was shared here in the threads above and I am finding this link so interesting. I’m definitely going to bring it up to my physician when I see her next. I have been prescribed the mega dose of 50K IU for 12 weeks as well, so far I don’t think I’m noticing too much of a difference but I am trying to be mindful of any changes. Unfortunately I was in a car accident in December and I’m having a hard time differentiating what might be whip lash vs. what is pain from coughing/IPF-related discomfort. Did you just start the supplement on your own after the mega dose timeframe was done? I think I am going to do this as well…
I sure do, my puppy is such a suck and gets a way with everything but I love her so I am fine with that. I’m so grateful for her! I wrote an article actually about how she is my best source of therapy. You can find it here if you wanted to read it: https://pulmonaryfibrosisnews.com/2017/12/14/best-ipf-therapy-is-my-dog/
No pressure though of course! I hope you had a wonderful day today, and thanks so much for sharing 🙂
Charlene
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Janis and Charlene,
C- thank you so much for posting the link to that article! I am really strong in my conviction to not be reduced to my disease. This is just another page in my story and does not make up my whole book. I will do everything to help others know that they are more than their lungs/diagnosis.
J- I love dogs! I have 2, a 14 year old Golden Retriever/Blue Heeler mix and an 8 year old Boxer. We also have 2 cats. I am married (almost 21 years) to the best man and my favorite person ever! He is my rock and my heart! We have 2 beautiful children ages 21, and 20. We also have an unofficially adopted son as well, he is 21. I work FT for a hospital here in the business office and am fortunate that I get to work from home. I am also a FT college student working on my Bachelors of Science degree in Public Health/Healthcare Management and Policy. I have hopes to finish my BS and continue onto a accelerated BS to RN program and flow into a Masters of Midwifery program to become a Certified Nurse Midwife. I love yoga, walking in sunshine, taking trips with my family, art, interior design, some gardening, reading, anything creative really. I love to sing but am not so great at it but I still do for the joy of it. My daughter has a lovely voice and we often joke that I sing with a lot of passion but little talent, ha ha ha. It sounds like you have a very lovely family of 2 legged and 4 legged loves. I don’t know much about Pekinese dogs but they are quite cute!
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Hi Aishia and Janis,
One more thing I’ve noticed we have in common – the love of our four-legged friends! I have a 2.5 year old golden retriever, who I kind of ended up with by ‘accident’ as an 8-week old puppy and I love her more than I ever thought possible to love an animal. I also have a cat, who is a bit more of a pain in the butt but I love her too 🙂
Thanks for the lovely comment on my article Aishia, and I’m so glad you could relate to it’s premise, about us being so much more than our lung disease. I try to remind people of this often as well, as sometimes it can suddenly be so much about our lungs and people forget to ask about other things important to us as well.
I hope you’re having a great day!
Charlene -
Hi Aishia,
It sounds like you have a wonderful family, both furry and not. 😉 Your dogs sound wonderful, they are such nice breeds. Mine are rescues, except one I got as a puppy. None are show quality in any sense of the word but I think they are beautiful and they keep me going!
I went to college for training to be a medical transcriptionist but ended up working in low-income housing. I do have a great interest in healthcare in general. It is so fantastic that you can work from home!
You are a very busy lady. But what a wonderful goal to work toward, a certified midwife. I can’t imagine a more fulfilling career. You also have a lot of interesting hobbies.
Thanks for sharing your personal information, it is great to get to know you better.
Janis 🙂
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I have been taking Esbriet for three years now, and have changed to the single 801 mg tablet instead of the three capsules at every meal. It is much more convenient. I had learned early on that Esbriet in either form needs to be taken with food, not ahead of time, but just before the first bite, to eliminate nausea and even dizziness. I have learned that with the tablet, which must dissolve faster than the caps, I have to wait longer, until after I have eaten a portion of the meal, to take it. With that simple precaution, I experience no problems.
The only other side affect that I quickly noticed is the increased sun sensitivity. No longer concerned with developing a tan, SPF 50 prevents me from getting a rash.
I hope these tidbits help someone.
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Hi Scott,
Welcome to the PF forums and thanks for contributing to this thread! I also didn’t know about the 801 mg tablet, so I am confident that others will find this information, along with how you’ve learned to take your Esbriet very helpful. I am not on Esbriet, but OFEV instead and have also noticed sun sensitivity… basically just more susceptible to burns. Although with the proper protection, I still love to be out in the sun and I guess I need to increase that this summer as I started another forum topic about being critically vitamin D deficient. So much so that I needed a prescription for vitamin d 50,000 IU for 12 weeks to bring it up again!
Thanks again for sharing, I know others will find your post very helpful!
Cheers,
Charlene
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Scott,
I’m glad to hear that you are not experiencing side effects with Esbriet. I was unaware that a single 801 mg tablet could be taken instead of 3 capsules at every meal.
I started taking Esbriet 2 days ago, one 267 mg tablet at each meal. The initial shipment contained 207 coated tablets. Week two I am to take 2 tablets, 3x/day. Week three – 3 tablets, 3x/day. The booklet I received indicates for week four to ask my doctor if transitioning to fewer pills per day is an option.
When did you switch to a single dose 801 mg tablet?
I was diagnosed in December 2017 with IPF at age 69. How old were you when you were diagnosed and how has your health fared over the 3 years?
Right now I wouldn’t have known there was anything wrong with my lungs, except for a CT/PET scan that was done at the end of 6 months chemo for recurrent prostate cancer. As a result of the scan, I found that I have – in addition to IPF – coronary artery disease (CAD) and hyperactive thyroid disease. I don’t feel sick and have kept up with my 45 minute walks at least 5 day a week. I have modified my diet to include more vegetables, nuts, fruits and whole grains and less animal based foods.
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Hi Alfred,
I hope you’re doing well.
Just a quick reply to your questions for Scott: do you walk inside or outside for your 45 mins? Do you find one makes a difference in your breathing over the other, ie. weather conditions? I really enjoy walking, especially taking my dog for a walk in the summer time but I am noticing more often than not, I struggle with shortness of breath if walking outside. Likely the elements including air quality, temperature, pollens, etc. contribute to that but it is still manageable for me, despite using supplemental oxygen at times. When I walk inside on my treadmill though I don’t seem to notice the same struggle. Just curious whether anything impacts your walks or if there are things that make it better for you?
Thanks,
Charlene -
Arnold,
I read about the 801 mg tab several months ago in an PFF email news letter and my pulmonologist was fine with me switching and wrote a new script. I carry the medication in a pillbox for meals when I’m out and about. I carry enough for many meals and it is much easier to to take one than three, and they don’t roll off the table as the capsules did.
I am now 68. My diagnosis was also a fluke as a result of an x-ray taken for a neck issue that caught the upper part of my lungs as well. Three years later, I am still functioning fairly normally with no need yet for oxygen. The Esbriet has slowed the progression of my IPF by about half as was hoped. My wife and I enjoy walking in our nearby county and state parks that have plenty of challenging hills. While still able to do it, I do have to take them a little slower and stop to catch my breath occasionally. I think that remaining active helps.
Scott
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Thank you for sharing Scott!
I agree with you, that remaining active helps… I certainly think it has for me as well. 🙂 Have you started or completed any pulmonary rehabilitation programs yet? Perhaps this hasn’t been recommended to you yet based on your disease being stable, I just thought I’d ask as it really helped me when I did it. Just curious of others’ experiences thats all.
I hope you had a great day.
Charlene.
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Shaw,
You’ve come to the “right” place…you probably realize that fact now. this group will help you through just about any problem, give you advice, and give you support…we’re all I this together. I had no side effects with Esbriet until I went to the full dose…3 pills at each meal. I take my Esbriet half way through the meal…nothing magical about that…it’s just what I do. When I started 3 pills a day, in about a week I started having a side effect. nothing pretty about it….but the folks on this site have a good sense of humor, even for the most embarrassing issues. I experienced what I called “battery acid diarrhea”. Flame throwing out the posterior. I asked for help, and I did receive the perfect solution which actually worked. Every morning with breakfast Ihave some probiotic yogurt…Yoplait. It is almost like a desert to me. Within 2 weeks the flame was out and all was normal! The big thing here is, to ask for help and stick with the program as sometimes time will resolve everything! Good luck!tommagic1
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Hi Tom,
Welcome to the PF forums and thanks so much for contributing to this thread. We’re glad to have you, and I couldn’t agree more …. we are all in this together!
We do have a good sense of humour, and I am glad you do too Tom as there is a potential for all of us to experience unpleasant side effects like you mentioned. I’m glad it was an ‘easy’ fix for you though, meaning you just had to add a dessert-like option into your diet (the yogurt). Regarding the Esbriet, have you felt like it is helping you Tom, in terms of feeling better generally (ie. less short of breath) or based on your lung function reports? Have you been on it for awhile?
Wishing you the best and looking forward to getting to know you a bit more!
Charlene
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Charlene,
Thank you for the “welcome”. I have been reading Pulmonary Fibrosis News for some time now. I am surprised I never registered. I have been Esbriet for about a year now. I feel I have been stable, but I go in next month for my annual testing, so I’ll thankfully have some data to hopefully back that claim up. during my last visit with my pulmonary doctor, who is quire “blunt”, we were in a discussion of the benefits of Esbriet. I had mentioned I was aware of many people who felt for a “10 percent” benefit, it wasn’t worth the side effects. She then told me something that said “everything” for me. She stated all her IPF patients are on Esbriet. several patients now going on 3 years of taking Esbriet. She said everyone of them has been stable and remains stable. She added, and you know from your studies that statistically, half of them should be dead. So that is a pretty good testimonial for me.
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Hi Tom,
You’re most welcome, and I am so glad you chose to join the forums after following Pulmonary Fibrosis News. Your input will definitely be of value to the many folks who frequent the forums, I have no doubt 🙂
Goodluck with your upcoming appointment and pulmonary testing. Depending on how you feel after it, I’d love to hear how it goes, including a comparison to where you were last year at this time and now, having been on Esbriet for about a year. I have so much hope for this drug, although I know the side effects can sometimes be unpleasant for patients. I also have hope for stem cell therapy and the idea that it may be transformative in the treatment of this disease in the future, if they can successfully figure out a way to regenerate lung tissue using stem cells.
I appreciate hearing what your Doctor shared, and I can imagine that was an encouraging testimonial for you for sure! I hope you continue to be and feel stable, and wishing you all the best at your upcoming appointment.
Take care,
Charlene
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Hi Charlene,
I walk only outside. I take a fairly steep climb uphill which takes about 5 minutes past my home, downhill and then back uphill again. Total time is about 45 minutes. I am not out of breath and don’t stop during the walk. I walk in all temperatures, except if it is very hot and humid. At this point I do not struggle, probably because I was diagnosed very early in the disease.
I am also making progress on weight loss. Before starting a modified Fuhrman diet I was 184 (Feb 24). This morning I weighed 179.
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Wow, good for you Alfred! That is amazing not only that you’re able to walk 45 minutes without feeling short of breath, but also that you can walk up and down hills. Do you find heat and humidity bothers you, or you just don’t prefer to walk in it? I apologize if I have already asked you this…
I have never heard of the Fuhrman diet, but I am going to look into it. This is just something you chose to start on your own?
So many people have been talking about the ‘fad’ Ketogenic diet (I think it feels like a fad anyways) as it is a quick way to lose weight, which is ideal but my fear is the sustainability of this diet. Since your body goes into ketosis, if you stray off the specific diet plan, your body falls out of it and then the high-fat intake you are eating that your body uses for energy in ketosis is then not being used for energy and is stored as fat within your body. I like the idea of it, and I do know many people who have had a rapid weight loss on it, although I worry about sustainability and particularly, if this is a healthy diet for people who have health issues. My goal isn’t to lose weight right now necessarily, nor has it been advised for me to do so right now, but I am always looking at ways to eat healthier and maintain a healthy weight. That being said, I don’t think the Ketogenic diet is for me, so I might look at the one you suggested and see if I could implement that into my day.
Thanks for sharing and I hope you are doing well.
Cheers,
Charlene
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I am currently taking the 801 dosage of Esbriet 3 times a day. This is so much better than the 9 pills per day. No additional side effects. I take it 4 to 5 hours a part with meals. Has anyone taking the Esbriet any other way than this? What it has done for me remains unknown. I am stable even though my PFT shows a small decrease at the last reading.
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Hi Patricia,
Welcome to the PF forums and thank you so much for contributing to this thread. We’re all learning a lot from one another about Esbriet and the different ways patients are taking it.
Did you start taking it with the 801 dose tablet? I know some patients were taking a lower dose but more often throughout the day, but I think most were/are taking the upto 9 tablets a day (3 with each meal I believe). I am not on Esbriet, so unfortunately I can’t comment on other ways that it can be taken, however someone might be able to speak to that here on the forum. I am on OFEV but I know there have been a lot of people who have figured out ways to manage their side effects of Esbriet, or better yet: not experience any at all 🙂
How long have you been taking it Patricia? I am always so interested in my PFTs when I go in, so I can compare that whether or not my feeling stable is actually reflected in the numbers of my tests.
I look forward to getting to know you a bit more through the use of the PF forums. Thanks again for your comments.
Sincerely,
Charlene
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I am thankful that you all are here in this support group. I am supposed to begin taking Esbriet soon. I hope that i will be able to tolerate it. Thank you all for the comments. I will take everything you have said into consideration when i begin this medicine. My pulmonologist has gone over the side effects and wants to start me on a therapy.
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Hi Roger,
Welcome to the PF forums, I’m glad you’ve joined us. This is a very wonderful group of people who have lots of personal experiences, tips, tricks and advice to share based on their own journey with this disease. Please feel free to ask as many questions as you’d like – likely one of us have been there! I am so glad to hear that this thread about Esbriet has been helpful for you.
Please let us know how you make out when you start this new drug, and I will keep my fingers crossed that you do not experience any unpleasant side effects with it.
Take good care,
Charlene
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Hi again, Charlotte,
Thank you for your kind words. It is hard losing all your siblings. I was a late in life baby and my eldest brother was 24 and was married with a baby when I was born. The youngest was 16. I was unexpected, to say the least. 😉 When I was young my brothers were more like uncles but when I got older we became closer. I really miss them.
My heart attacks were 15 years and six years ago. Mine are somewhat atypical, I don’t get crushing pain. I get an odd fluttering sensation in my upper chest and extreme fatigue. My youngest brother had a heart attack with no pain at all, he just passed out. After finding out I’d had a heart attack, he went to his doctor and his heart attack was diagnosed and he had a bypass several weeks later.
I will certainly let you know what the doctor says about the celiac disease. That diet is just so hard to follow! It takes such a small amount of gluten to undo all the good following the diet has done. I don’t really feel better on the celiac diet. I am anemic due to celiac but take iron for that. I would be more motivated to be compliant on the diet if it made a difference.
Regarding the Vitamin D, my doctor advised me to take Vitamin D supplements. She thought it was a good idea, living in Western Washington state with so much rain. And now that I take Esbriet and must use SPF 50 sunscreen and avoid the sun as much as possible, I am sure it is even more important now.
I am so sorry to hear about your accident and subsequent pain. Have you had x-rays done? Did your doctor prescribe physical therapy?
I absolutely love your article about dogs! It is so very true, mine give my life purpose. I live alone and they are the reason I get out of bed every day. And they do try so hard to make us feel better when we are down. They make me laugh every single day. My life would be empty without them.
I had a good day today and hope you did, too. I enjoy your remarks and am glad I have found this forum.
Janis 🙂-
Hi Janis,
Thanks so much for responding, and being so willing to share more of your story with me and the other folks on the forums. I also have older brothers, who are quite a bit older than me … 7 and 10 years, and while we used to fight like cats and dogs when we were kids, we’ve grown quite close now. I’m still struggling a bit to help them understand how their “baby sister” has been diagnosed with a life-threatening illness. I’m working on it, and trying not to push the issue … maybe they understand, but just don’t express that understanding? Not sure, but I really value my relationship with them so I can only imagine how much you miss them. <3
Wow, thank you for sharing re: your heart attack and symptoms. The potential of having a cardiac event for me is high due to my pulmonary pressures, and I am always scared that they could go unnoticed as you mentioned your brother did. Did you know in the moment that you were having a heart attack? Symptoms like fluttering and fatigue are things I didn’t associate with heart attacks, how did you know this was one for you? I’m so glad you sought out medical attention sooner than later and were treated. I’m very thankful for this!
With regards to the celiac diet, I agree, it is one I think that is hard to follow. My Mom has this disease and went gluten free not that long ago, and she is always trying to convince me to try it but I don’t think it would be sustainable for me, so I don’t want to set myself up to fail. Any thoughts on the Ketogenic diet? Even though weight loss is not a goal for me right now, I always am looking for ways to eat better and I know people who have dropped a lot of weight suddenly on the keto diet, but I fear it is just a “fad diet” and I also can’t imagine it is healthy for you. This is another one that I think would be hard to sustain, since when you break ketosis, your body stores all the extra fat you’re taking in, as opposed to using it for energy like it should be. There is a diet that another member of this forum shared, that is also helpful for coronary heart diseases (CAD) so I might try that!
Thanks for your kind words about the accident and pain. Unfortunately, I am Canadian and we were seen in a US hospital that night which has racked up an extensive medical bill for myself and two friends in the accident with me. We are currently in personal injury litigation with a lawyer, and are pursuing a lawsuit agains the driver of the cab. It was really scary! Thankfully, I didn’t have any bone injuries to my legs which were kind of crushed in the back seat, but had pretty extensive muscle and soft tissue damage, including blood clots embedded in the muscles of my legs. I am still doing physical therapy for it, which is helpful but becomes difficult with my IPF symptoms. I’m hoping my pain subsides soon, although I’m unsure anymore which is IPF pain, accident pain or just general aches and pains…. ho hum!
I’m so glad you read my article! Yes, dogs are wonderful companions and I never knew how much I could love a “fur baby” until I got one 🙂
I have had a nice day as well thanks, just glad the weekend is coming up so I can spend some time resting and rejuvenating. I am also so glad you found these forums, and that we have connected. Thanks again for your wonderful comments.
Warmly,
Charlene
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Hi Charlene,
To answer your recent questions, I like to walk in all weather conditions except when it is raining or oppressively hot. On very hot days I may wait until evening when it cools down. Since starting Esbriet I will need to be more careful to cover up and use sunscreen.
As far as the Fuhrman diet, my cardiologist recommended that I read his book – The End of Heart Disease. Fuhrman makes a very sound case for eating a healthy diet to reverse the effects of the standard American diet (SAD). It makes a lot of sense even if you follow it less than 100%.
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Hi Shaw. I also was very nervous about starting the Esbriet since my Dr. had told me it would give some people stomach issues, and having to be careful to coverup with sun tan lotion on uncovered skin out in the sun. However, I was also bound and determined that I was going to take this medication as it was the only one recommended for my IPF. I was told that I had an advanced case so a transplant was not a possibility. SO, I needed the Esbriet. I went on the routine of building up tolerance and I have been very well with it. Yes, at times there was a bit of nausea at first, but I just took a rolaids or tums and it took care of it. I found that I needed to get quite a bit of food down before I took the first pill (I take 3 at each meal) so that it didn’t stick part way down and seem to stop all the rest of the food from going down. I also did try to take the pill with the moist food and not with water/juice or tea. That stopped the pills from sticking. I have actually had to take all 3 pills with a buttered bun or toast very close together when I was dumb enough to forget to take them. Boy that is stupid, but I have learned. I have been on it since June 1, 2017 and have had no real problems. I find I feel somewhat better and that I haven’t become worse so I feel it is doing it’s job. Good luck to you and best wishes. Joyce
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Hi Joyce,
Thank you so much for sharing all your tips and tricks about managing Esbriet! I know other forum members, including those who join us in the future will find your post helpful 🙂
I am glad to hear that you feel the medication is doing it’s job and that you feel somewhat better. I will pray this continues for you! Looking forward to connecting again.
Have a great day.
Charlene
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Hi Joyce,
I will be starting week 2 of Esbriet on Sunday. So far I have not experienced any problems. Thank you for posting your experience. For this I am encouraged about a smooth transition to 3 tablets/day.
Have you had liver function tests since you began taking Esbriet? Best of luck, I hope you continue to feel well.
Al
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Hi Everyone,
Does anyone know or have you experienced significant weight loss or gain on either of the anti-fibrotic medications, OFEV or Esbriet? I am on OFEV and am finding that this is the case for me (loss) and I wondered if anyone else experiences this? I am also very mindful of what I eat not only because I want it to be healthy (lean protein, veggies, whole grains, etc) but because the prednisone that I am on could cause rapid weight gain.
Looking forward to hearing back from you.
Cheers,
Charlene
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Update:
I have been taking Esbriet for 4 weeks now and no problems. My second months prescription arrived a few days back and I was surprised that it was (90) 801 mg pills. I checked with the Esbriet nurse, my pharmacy and my doctor and no one knew who made the decision for me to change to the larger brown pills. To my surprise, since I was tolerating (9) 267 mg pills a day for over a week, they all encouraged me to make the change. It’s now been over a week with the larger pills and my good luck has continued. I have to admit (3) pills a day is much more convenient. I encourage anyone that is still on (9) pills – and not having any problems – consider the change.
Shaw
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Hi Shaw,
Thank you so much for sharing, and I am thrilled to hear that you’re still doing well with the Esbriet, even with the change in tablet dose. Have you found out who ordered this change yet? I just wonder if this is information other patients might need or want to know, so they know who to ask about a change in their pills? Interesting that your Doctor, nurse or pharmacist didn’t order the change.
I can imagine how much more convenient 3 pills are vs. 9 and I am so glad you’re tolerating it will. I will continue to keep my fingers crossed that your good luck continues 🙂
Cheers,
Charlene.
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Hi Charlene,
One of the Esbriet side effects is loss of appetite which would generally lead to weight loss. I was on prednisone for months during my chemo. At first I lost weight then gained. At the end I was about 190. I went down to 184 a few weeks after. Since I started following the Fuhrman recommendations on Feb 24 I’ve lost 6 lbs. I would like to get down to 170.
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Hi Al,
Thanks so much for sharing your experience and again about the Fuhrman diet. I am going to look that up right now actually – a nice way to spend a Sunday morning 🙂 I like the premise of this diet as you have described, it sounds like it is more about being health-conscious as opposed to the sole goal of losing weight and I like that.
I am on OFEV but the side effect of loss of appetite is expected with this medication, similar to Esbriet. I suppose I have lost my appetite compared to before starting the drug, although I go on binges of wanting certain foods at times and I don’t like that. However generally, I eat less and I’ve really gotten into fresh juicing (I received a juicer for Christmas and love it) so replacing most meals with a fresh juice and small snack such as crackers & cheese, a hard boiled egg, etc. would definitely reduce my calorie intake. I guess after talking it out this makes sense. I’m just trying to give my body everything that it needs to remain as stable as possible for as long as possible.
Thanks again for sharing, and I’m going to go look in up the Fuhrman diet. Any specific website on this that you’ve found helpful? I can look at ordering the book, although I know it will take a couple of days to arrive.
Thanks Al.
Regards,
Charlene
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Hi Charlene,
You will find a wealth of information by a Google search on Dr. Joel Fuhrman.
I don’t know if you are an ebook fan, but for the past several years I have not purchased a hard cover book. Everything is either in iBooks or Kindle Amazon. I love this way of reading because it is so easy to search, bookmark, highlight and add personal notes. As all information on my phone and iPad is backed up to the cloud there is no worry about losing anything. Worst case if your device goes down, is lost or stolen – all information is easily restored to your device or a new device.
As were are running out of storage space it reduces clutter and makes it very easy to find a book you want to refer to at a later time.
Kind regards,
Al
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Hi Al,
Oh wonderful, I’ll do this – thanks for the advice! I did find some interesting information on the Fuhrman diet already, although I will happily read more so I’ll see what else I can find.
That is a good idea, I’ll take a look at getting the ebook version of the book you recommended. I used to enjoy loading books onto my iPad, but haven’t done it in awhile so I’ll do this, so as you say it is easy to pick up where you left off, bookmark sections, etc. Great idea, thanks for sharing!
Hope you are well. 🙂
Cheers,
Charlene
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Ramping up Esbriet is important. Three times per day. First week is 1 per dose, Second week is 2 per dose, then Third week 3 per dose. If you start at full dose (3 per dose) then you run the risk of side effects like diarrhea and I would strongly suggest NOT wearing a tight fitting belt whose buckle requires a Herculean effort to release.
I have been on Esbriet for 3 months and latest Pulmonary function tests show a stabilization of ILD progression. Hopefully this will buy time for getting a transplant green light. 4 years ago I had lung cancer and need to pass 5 years to be considered.
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Hi Jim,
Thank you so much for contributing your comments to this thread. I know others who read about the slow increase or gradual progression of Esbriet in future will find your comments helpful! Hopefully their physicians will reiterate the importance of gradually building up a tolerance to Esbriet through a weekly progression as you have outlined above.
I am thrilled to hear of your PFT results, and the stabilization of your disease progression. This is excellent news! Is this the first time you’ve seen a stabilization in your lung function since your diagnosis? I always find this so encouraging and know that others do as well who are hoping to see a stabilization in their function after starting an anti-fibrotic medication. I will keep my fingers crossed for you that this continues until you reach 5 years! If you get a moment, please check out Kim Frederickson’s columns about her initial transplant testing. She is a wonderful writer and is chronically her journey of seeking out a lung transplant. She was just approved to start the testing, despite not quite being at 5 years post breast cancer. We’re pretty excited for her!
Best wishes to you as always 🙂
Cheers,
Charlene
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Thanks to everyone for the good advice. I’m now on day 12 of esbriet and tolerating it well, thanks to the pointers I’ve picked up here. 2 pills with meals right now but I was given the 801s to start next week. Taking 3 at a time wasn’t real appealing. Fingers crossed I’ll tolerate those ok also.
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Let us know Mike, I’ll be sending good thoughts and prayers that the 801s go alright when you start them next week.
This has been one of my favourite threads on the forums (among many) as it is patient’s sharing their experience to patients who are new to Esbriet, and everyone has been so kind in generous in the tips and tricks they discovered. It is such a unique and special community I think! 🙂
Goodluck Mike. If you feel upto it, please let us know how it is going…
Warmly,
Charlene.
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Scott,
In response to your March 14th post. It appears we are both at about the same stage in IPF and very close in age. I am encouraged by the length of time many of the people on the forum are living with the diagnosis as opposed by the 2-3 year life span that is found on the internet. It’s such a shame to read about young people who have been diagnosed and what they will go through.
In my case I don’t feel sick and would not know I have the condition apart from a fluke diagnosis as well. Many of the progressive diseases move more slowly in older individuals. I had lunch today with a good friend who lives about a mile from me. He joined this forum a while back, was diagnosed with IPF about 6 years ago. He gets around as best as he can, wheeling an oxygen tank. Being that this is such a rare disease it is quite remarkable that the two of us have it. His was most likely brought on my smoking and work he did at ground zero after the 911 attack. Fortunately for him his treatment is almost entirely covered by the fund set up for 1st responders. We both live in North Jersey about 12 miles directly west of the Empire State Building.
Were do you live? Any idea what may have been a possible cause for your condition. For me it is a complete mystery. No one in my US family or in my Australian family has this.
I wish you many years of productive life. If you would like to converse via email I would certainly be open to.
Kind regards,
Al
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Hi Al,
Great to hear from you as always – thanks for contributing to this thread 🙂
I agree with you, I find it very inspiring to hear people’s stories on this forum and how long they have been living with this disease. It is a good reminder for me that the 2-5 year prognosis/survival expectancy is just a number and that it can be surpassed by people. That terrified me when I was first diagnosis, and now I am not as scared because there are lots of people on here living well with IPF.
I hope you and Scott are able to connect Al and sending best wishes to you both!
Warmly,
Charlene.
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Have not felt this good in more than a year. I’m 2 days from completing a 2-week regime of descending Prednisone for the hives condition that started about 3 weeks ago.
The only difference to the medications/supplements that I’m taking is the increased amount of vitamin D3. Together with a bone health supplement, a mult-vitamin and most recently liquid vitamin D3. Daily total is 5,500 IU. My last blood test showed 29 ng/mL.
Ideal target is 50 ng/mL. On my last Cardiologist visit (4-12-18) he added 3,000 IU vitamin D3 in a liquid form to my supplements. I can’t say this as an absolute, but I feel that the increase in daily D3 is making the difference. A level of 5,000 IU should bring my blood level up to about 50 ng/mL.
I came back back from a vigorous walk up and down hills for a total of about 40 minutes. I experienced no shortness of breath whatsoever and didn’t feel fatigued at the conclusion. Earlier today I did some light yard work.
Does anyone else have similar experience with Vitamin D3?
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Hi Al,
Thanks for sharing, and I sincerely hope that you continue to feel so well. It is always encouraging to hear of others doing so well, so I appreciate your posts very much 🙂
I have been waiting for my prescription vitamin D supplement to make a difference to how I am feeling overall. I’m not sure if the vitamin D that I am on is the same as D3, is there a difference do you know? I was given a vitamin D supplement in February, to take for 3 months and it is 50,000 IU. I take it once per week and can’t say that I am noticing a huge difference, although I hope it starts to happen soon as everyone says I’ll feel better taking a vitamin D supplement. Do you take a supplement on the regular, and then just recently it was increased?
Sounds like you had a great day, and that your disease still isn’t impacting your physical abilities too much! I will pray this continues for you for a long time…. keep inspiring us. Thanks for sharing Al!
Warmly,
Charlene.
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I have been taking Esbriet for 2 years and had problems in the beginning with heartburns. I am taking 9 tablets a day and found that if I eat some protein before taking my tablets and some protein afterwards, I am doing fine. I eat a piece of cheese with a cracker before and after and for me that works. This may not work for everybody, but may be worth a try.
Regards – Rune
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I took Esbriet for about 18 months. I always took it after a full meal. At first I had a little stomach discomfort that didn’t last very long. Eventually I only occasionally had a little heartburn that a little milk would immediately take away. The SUN was not my friend. Any skin not covered or protected with SPF 50 would burn and break out in a rash in a short time.
So while I was fortunate that I tolerated Esbriet well it wasn’t effective for me. Of course, I had just received via Fedex a refill from my speciality pharmacy when my doctor’s unsaid not to take it anymore. No sense enduring the side effects when I’m not benefiting. I hadn’t even opened the shipping package but the pharmacy won’t let me return it. It’s policy.
Bottom line I have an unopened bottle of very expensive Esbriet (30 day supply, 270 capsules) that will go to waste. If anyone wants them, let me know.
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Hi Christine,
Thank you so much for contributing to this thread and sharing your experience of taking Esbriet. I know this particular topic has been very helpful to others, so I am sure everyone is appreciative of you taking the time to share your experience.
I am not on Esbriet but instead take OFEV and have been told to watch out for sun exposure as well. I am a bit anxious about being at my cottage this weekend and on the beach, which is where I so desperately want to be to soothe my soul. I will be sure to apply lots of sunscreen though, and I do hope you didn’t learn about the burn and rashes that come from sun exposure on Esbriet the hard way.
Did the doctor say why it wasn’t helping you? Was the progression of you disease still occurring rapidly? Im curious because it didn’t sound like you had a lot of side effects, and the drug won’t stop the disease progression but even slowly it a little is something I would consider a benefit. If you’re comfortable sharing please do so.
You are so very kind to offer your Esbriet to someone who might need it. If you’re okay with this, I may make a post about it on the main page so others can see it, even if they don’t open this thread? Someone may connect with you about this, and hopefully something can be sorted out.
Thanks again Christine and I look forward to continuing to get to know you through the forums even more. Wishing you well!
Regards,
Charlene.
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I’m fine with you posting that I have a new, unopened bottle of Esbriet (270 capsules) if anyone currently taking this would like it. I’m not trying to sell it, but I would love to give it anyone who could use it. I don’t know what people are paying for this but it is very expensive.
I just happen to be one of those for who does not help. I’ve been on oxygen just over 1 1/2 years and have gone from using 2 Liters when I walked, etc. to my current 8 liters at rest and 15 liters to walk, shower, etc. I still go out and maintain as much activity as possible, I just have to bring lots more O2 with me. It sucks but it’s better than giving up more quality of life than necessary.
If you don’t have one, be sure to get a good sun hat. I bought a Scala Women’s Cotton big brim hat with upf 50+ protection online and I love it. It comes in many colors. Hope you enjoy the beach. I am so looking forward to being in the sun!
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Hi Christine,
Thank you so much for getting back to me, and again, this is such a kind offer you’ve made to others regarding the Esbriet. I agree, it is a very expensive medication! If no one takes you up on the offer in our forum community, I’d love to ask a woman who is seen at my transplant clinic for IPF. I believe she is on Esbriet and I know finances are tough for her right now. I don’t know what her insurance pays for though as Canadian healthcare but if I could ask her, I’m sure she’d appreciate it.
Thanks for sharing your oxygen requirements… although I’m sorry it has changed so much in 1.5 years (from 2L to 8-15L). Kudos to you for remaining active and doing things as much as you can! I certainly can attest how it is not easy to lug oxygen around while doing errands. Just yesterday I was complaining about how tiring it is lifting either my tanks or my POC in and out of the car. Do you still drive while using your oxygen?
Thanks for the tip – I do need to get a new sunhat so I’ll look into the one you mentioned. It is supposed to feel like 45 degrees celsius here tomorrow so I don’t think I’ll be outside much, as much as I want to be! Stay cool but hope you do get a chance to enjoy the beach Christine.
Take care,
Charlene.
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If you have someone who can use the Esbriet I will be to mail it to them.
Yes, I still drive. I always have a full rack of D tanks (12) in the car. I have 3 of the carry bags for the tanks. I now have to bring 2 tanks into he grocery store if I’m doing a full shopping. I just hang them on the shopping cart. Fortunately I’m a pretty strong person.
It is actually very nice weather here (Connecticut) today. It’s 80F and not too humid. It’s forecast to get hotter and more humid the next couple of days. I’m going to sit outside for awhile.
Always happy to hear from you,
Christine
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Good Morning Christine,
Thank you so much, that is incredibly generous of you. I will ask her, she is part of our lung transplant support group and I know due to circumstance that finances are tough for her right now. I’m sure she would be very grateful. Our next group meeting is the week after next (July 10th) so I’ll be in touch after that! 🙂
Kudos to you for working out such a system with your oxygen that allows you to still do daily activities. I know it isn’t easy, but it just shows what we can still do despite our illness. Thank you for the inspiration. Do you have any of the backpack carry bags for the size D tanks? I cannot find one to purchase anywhere, not online or anywhere in store. My oxygen supplier says they get the occasional few, but don’t hold or reserve them for patients so it is a first come, first served basis and they go so fast. I feel like this would make my life so much easier but I have no idea where to find one, so just curious if you use them and find them helpful? If so, I’ll continue my searching.
Glad your weather has been nice and hope you got to enjoy sitting outside for a bit today. It is topping 45 degrees celsius here, so very hot with the humidity. Take care and enjoy your weekend Christine!
Kindest regards,
Charlene.
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Good morning Charlene.
I don’t have any backpacks for carrying the oxygen tanks. I don’t think it would be practical for me anyhow since I frequently need to have 2 tanks with me. Also it would be easier getting in the car with just the shoulder strap. I slip it off my shoulder and stand it on the floor next to my left leg while driving. You can find the backpacks online. More are available for the smaller C cylinders but they are also available for D cylinders. Hope you find one that works for you.
Regards,
Christine
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Hi Christine,
I hope you’ve had a wonderful weekend!
Thanks for letting me know re: the backpacks and how you best carry your tanks. I suppose if you carry two with you then you’re right, a backpack wouldn’t be super practical. I usually sit my oxygen tank on the passenger seat when I’m driving or set it on the floor as you mentioned. I’ll have to take another look at online options for oxygen cylinder backpacks. I had looked a few months back to no avail, but maybe I didn’t do a thorough job and should try again. I really think having one would be a good idea for me, and would be helpful specifically for my D-sized cylinder. Thanks again for sharing and hope you’re doing well.
Kind regards,
Charlene. -
I searched “Walmart oxygen D cylinder backpack” and the a result was a backpack from Roscoe Medical for US $29.95
There are other sites out there with backpacks. Hope this helps you find one.
Sincerely,
Christine
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Thank you Christine! Is this a US Walmart? I tried searching in Canada awhile back but never found one that I wanted. However, I did a search again and there is one I can order through Walmart which looks awesome although it is expensive. I can order it right to the Walmart store though so I will consider that! Thanks again for sharing 🙂
Hope you’re having a great day!
Charlene.
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Online Walmart. I don’t know where it’s shipped from, but any result I get would be in u.s. dollars. I assume when you search Wal-Mart online your responses would be in Canadian dollars. I was I just trying to find one for you.
Nice day here, but hot and fairly humid.
Regards,
Christine
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Hi, I’ve been on Esbriet since February. The first dose I noticed I was nauseated. But since then it has been much milder and by the end of the day, I am very fatigued. I don’t know whether it is just the IPF or the IPF and Esbriet. Plus of course, I’m in heart failure as well!
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Hi Bruce,
Thanks for joining the forums and contributing your experience(s) to this thread. I’ve really learnt a lot and benefited from hearing from others experiences of living with IPF.
So sorry to hear that you were nauseated when first starting Esbriet, this seems to be quite a common side effect. Glad to hear it has subsided a bit, although I can relate about how tiring and fatigued this disease can make you, especially at the end of a longer day. I am on OFEV, as opposed to Esbriet so I do suspect that much of your fatigue is coming from the IPF itself, as it can make us so tired. I hope you’re able to manage this unpleasant symptom alright.
So sorry to hear of the heart failure as well, is this due to your heart overworking to compensate? I know this can be “common” with iPF, but certainly not any less scary.
Hang in there, I am thinking of you!
Charlene.
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Hi Charlene,
In one of your earlier posts here you mentioned pulmonary PT. Did they teach you any specific breathing exercises? I have a doctor friend who practices taking 8 – 10 steps breath in; 8 – 10 breath out. That seems like a good idea to work on for us. Thoughts?
Thanks,
Steve
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Hi Steve,
Thanks so much for getting in touch. How are you doing? Are you having the heatwave that we’re getting right now, with temperatures upwards of 45 degrees Celsius? It is unbearable at times!
In terms of my pulmonary rehab/PT, yes I did find it helpful not only in terms of relief and reduction of my symptoms but also for breathing techniques I could use at home. Mostly my physiotherapist taught me different breathing patterns, techniques and speeds when I am doing different things, ie. climbing stairs, walking on my treadmill and carrying heavy items. We reviewed the benefit of “pursed lip” breathing even though I don’t have COPD and he gave me some similar instructions, in terms of amount of steps per breath. I think mine were a little less than 8-10, more like 6-8 due to my short strides. It was helpful for me, so I think your doctor friend’s advice is something to work on for sure. Have you tried it? How did it go for you, if so?
I can try and track down my instruction sheets from my pulmonary PT if they would be helpful for you, or I can try to write them all out as I remember them if you want? Let me know. Have you done pulmonary rehab/PT or has it been offered to you Steve? Sorry if you’ve told me this already and I’ve forgotten…
Chat soon,
Charlene.
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Hi Steve, my name is Christine and I have IPF. While being evaluated for a lung transplant I attended pulmonary rehab therapy. One of the things taught was climbing stairs. They said deep breath in and go up 2-3 steps as you exhale. Stop and inhale, go up more stairs while exhaling. I don’t know how impaired your breathing is but I’m very impaired (15 liters if I’m doing anything but sitting!) so this works for me. Regards, Christine
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Thanks for sharing this with us Christine, it is definitely interesting to learn about others’ experience with pulmonary rehab/PT. I was taught something similar with stairs, although I can do a few more than 2-3 but likely that is due to my lung function being different than yours.
Sending you best wishes as always!
Charlene.
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Hi Christine,
Thanks for your response. I was diagnosed a couple months ago but started having problems late 2016. Just started pulmonary PT and it is more a general workout so far. I am unfamiliar w liter measurements yet but the PlumPT should involve ways to expand capacity as much as possible while still able. That’s why I mentioned my doctor friend.
So we can independently practice longer breathes while walking on flat surfaces to help inflate/expand the lungs. Best success to you… Steve
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Hi Steve,
Sorry I had asked about pulmonary rehab in my previous response to you before I saw that you had written you’re just starting it. I do remember my first few appointments feeling like more of a workout as well, and then once I had a “baseline”, they started specifically focusing on my lungs and introducing activities that would help strengthen them, expand my breath capacity, etc. If you’ve been a few times and it still feels like more like a workout, please don’t be afraid to ask the pulmonary PT about lung-specific exercises if you’re curious. Sometimes they aren’t always aware of what we feel we can/cannot do as patients and don’t push us as a result 🙂
I’m glad you have your doctor friend as well, as anything we can do on our own to compliment or strengthen our medical care is a bonus.
Best wishes,
Charlene.
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Hey Charlene,
I will ask my pulmPT next week about specific breathing exercises and I do know a couple. Thanks for offering. The heat? Well I have been seen walking barefoot in snow just a few years ago but I spent the last 2 years in the Philippines so now the heat is familiar…. Been stateside since April and almost froze then in Roanoke, VA… hahahahah
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So what’s better; barefoot at the beach r baorefoot in the snow? I don’t know I’ll let you know when I get home after I finish looking for my shoes. I left them in the Alps somewhere….. Peace…
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Hi Steve,
LOL – I had a good chuckle reading your post, thanks so much for brightening up my day! Walking barefoot in the snow? Brrrr, I absolutely hate the cold and unlike you, can be seen wrapped in scarves, mitts and a blanket during the Canadian winters. Sometimes I wonder why I live here!
I bet the heat in the Philippines was great, ah, I would love to be warm all year-round. As much as I “complained” with the wicked heat wave we just had, summer is just a few short months so I really need to enjoy the warmth. It is something I like (the 45+ degree celsius weather) if I can be on a beach.
Glad you’re going to ask your pulmonaryPT about specific exercises – goodluck! The more we know the better 🙂
Enjoy your weekend!Cheers,
Charlene.
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