4 Side Effects of Ofev: A Patient’s Perspective
Following my diagnosis of idiopathic pulmonary fibrosis (IPF), I took some time to research the available information to learn about my disease. Despite discovering a lot of useful material from brochures, online sources, and support networks, I’ve found that connecting with other patients has helped me the most since my journey began three years ago.
I have been privileged to meet other patients through my local hospital’s transplant program and online groups for patients living with IPF. The Pulmonary Fibrosis News Forums is a wonderful place for patients to connect and support each other. I have learned so much from members including physicians and researchers, as well as patients and caregivers. Many discussions on the forums have brought me comfort because I know that my fellow PF patients “get it” in a way that others cannot.
One of the most popular threads discusses the side effects of two anti-fibrotic medications used to treat PF, Ofev (nintedanib) and Esbriet (pirfenidone). I take Ofev and have paid close attention to the threads discussing its unpleasant side effects. This is one example of how connecting with other patients has been the most helpful tool for me since my diagnosis.
I’ve been thinking about those people out in cyberspace who don’t have access to a support network to discuss important aspects of our disease, including the side effects of Ofev. So, I thought that sharing my experience with this anti-fibrotic medication might be helpful for anyone considering Ofev.
Connect with other people and share tips on how to manage PF in our forums!
While I initially found this medication hard to get used to, having followed my pharmacist’s suggestions, I adjusted to Ofev. I believe that it is keeping my disease as stable as possible. However, I have found the following side effects difficult to manage. As a reminder, everyone’s medical experiences are different, and these are my own personal observations. Be sure to consult your doctors about any treatment decisions you make.
- Gastrointestinal (GI) issues: A common side effect is digestive upset, including vomiting, diarrhea, and a lack of appetite. We need to eat well to fuel our bodies and enable them to create energy to deal with this disease. Recently, I chatted with a forum member about Imodium (loperamide). I’ve found the oral pill to be ineffective at treating my GI issues. But the sublingual pill works for me.
- Headaches and mental fatigue: While I’m not sure whether my headaches and mental fatigue are directly linked to Ofev or to IPF itself, I believe that these symptoms have worsened since I started taking the medication. Getting out of bed in the morning has become increasingly difficult, as have mental tasks involving detailed and repetitive work.
- Loss of appetite and change in taste: A recent discussion in the PF forums addressed a metallic taste associated with Ofev, and a change in the taste of various foods. I have experienced this periodically, but have been unable so far to identify which foods or tastes are most affected. Sometimes sweet foods taste strange, while at other times savory dishes have an odd flavor. Since starting Ofev, I can’t tolerate spicy foods. Can you relate?
- Liver problems: Before I started taking Ofev, my doctor told me about the effects the medication might have on my liver. Elevated liver enzymes is a common problem for people who are on Ofev long-term, so patients should be asking their physicians to monitor their liver function.
Have you experienced any unpleasant side effects of Ofev? If so, do you have any tips to deal with them? Please share in the comments below.
***
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Richard
I'm 72, was diagnosed with ipf in late May of 2019. I have been taking ofev for 2 months with only 2 instances of diahhrea. ( so far) I'm taking 150mg every 12 hours. I was told that "every 12 hours" was mandatory. I guess the hardest part is having to eat on that schedue as it has to be taken with food. I've only had 1 visit with my pulmonologist as he's on vacation right now but did have blood work done at the end of June. I'm hoping no news is good news. I'm not sure that the ofev is slowing the fribrocis or not but we shall see.
PS I find you're that you're writings and responces in this forum heart-warming and inspiring. I feel you're wise beyond ou're years. Hang in there, be strong breath well and thank you for being you. ??
Charlene Marshall
Hi Richard,
Thank you so much for reading my columns and getting in touch via the comments. So glad to hear that Ofev seems to be going okay for you so far, I know it is always concerning to know that the unpleasant side effects could occur at any time. I will keep my fingers crossed that you continue to tolerate the medications, especially with your regimen of eating every 12 hours (kudos to you for this!). I do hope the Ofev slows the fibrosis down for you! I also really appreciate your kind words, thank you. I tend to read others' comments on tough days and am so thankful for how they lift me up and continue to inspire me to write about my experiences if others' are benefitting. Thank you again - you've truly lifted my spirits today :)
Charlene.
Terri Banks
I would love to be a part if the forum. I need someone to about my IPF
Charlene Marshall
Hi Terri,
We'd love to have you join the forums! Feel free to check out this link and sign up for free: http://pulmonaryfibrosisnews.com/forums/
See you there! :)
Charlene.
David Lopez
I too have experience the gastrointestinal issues. Some days are worst than others as far as diarrhea is concern. As for taste changes in mouth, I started experiencing this about 3 months ago. I asked my pulmonologist about other patients experiencing this, and he said yes. He referred me to see an ENT. This did not help. He wasn't able to pinpoint the source. Personally I think it have to do with dental issues. I will find out in a month when I go for a regular checkup. The metallic taste is worse during the day. In the morning it's not so bad. This issue really cuts down on eating, since I don't enjoy food as I use to.
Charlene Marshall
Hi David,
Thanks for reading my columns and getting in touch via the comments. Sorry to hear you've experienced the GI issues. Have you read my post on the forums recently about the sublingual immodium being beneficial? It has worked for me and a couple other members of the forums. The key is the route it is take - sublingual (under the tongue) - vs. an oral capsule, as those didn't work for me in reducing the GI issues at all. Hope this helps! Please let us know if you find anything out about the metallic taste being linked to dental issues. I am curious about this, as a few members have recently brought up the metallic taste and dental issues. Sorry you're experiencing this, hang in there!
Charlene.
Martin Denny
I started taking Ofev earlier this year and, although I do not have the usual gastro effects, I find that if I drink any alcohol I get terrible hangovers that can last for a few days. Previously this did not occur. I assume that the effects of Ofev on my liver function is the cause i.e. I do not metabolise my alcohol as efficiently as before.
Does anyone else have this problem?
Charlene Marshall
Hi Martin,
Really good question! I think you could be right re: the effect of Ofev on your liver function leading to the hangover, but I can't be certain of course. Typically I don't drink as much as I did since starting Ofev, but I haven't noticed any increase in feeling hungover when I do. I'd be curious to hear from others though if they experience this? Please share if so!
Charlene.
Lou
At 74 very difficult to even respond . Ofev is a tough med. Takes 6 mo. To get acostomed to. I take
2 others prednisone and
Mcophenolate so weak and tired.
Charlene Marshall
Hi Lou,
Thanks for reading my columns and reaching out via the comments, especially knowing how weak and tired you're feeling. This disease is so cruel! I hope you have adjusted to the Ofev okay. Hang in there.
Charlene.
Chuck
Hi guys. I've been taking OFEV for over 4 yrs now. I started out with the usual dose of 150 mg every 12 hrs. Everything was great for the first two weeks, then the diarrhea hit. It was so severe I couldn't leave the house. My doctor agree the reduce the dosage to 100 mg. I've been able to tolerate that since. Still have diarrhea about twice a week, but I can live with it. The meds kept me stable for the first three yrs, but I've started to lose ground now and may be put on the transplant list soon. Almost forgot, my tastes in food change frequently. I seem to cycle through my likes and dislikes regarding food. So, side effects? yeah. Horrible? not so much. Does OFEV help slow the disease? I don't really know, but figured it couldn't hurt. So, bottom line. Life is good. There's lots of people with worse health issues than I have. I'm blessed. Enjoying every day one at a time. ?
Charlene Marshall
Chuck, my friend! It is so good to hear from you!! Thanks for sharing your experience with Ofev, including the ups and downs. A lot of people are struggling with the GI/diarrhea issues and are asking their doctor to reduce the dose. Glad you've been able to tolerate the 100mg better! Keep me posted on the transplant listing status, I am so hopeful that the gift of life will come for you ... you deserve it! Thank you for your positive attitude as well, so important on this journey. Stay blessed!
Charlene.
Jackie Kalina
HI CHUCK, How are you doing now? I have recently been diagnosed with IPF. I am now taking150 mg 2x a day and I feel miserable. Living Four years for me would be good as I am a 80 year old female. However, at this point, I don't think living like this is really worth it. I do not know. I have a mild case at present, no coughing or oxygen. But is the cure (no cure I know) worse than the progression of this disease? So scared. Thanks for any information. Sincerely, Jackie
Mary
I take an Imodium with my Ofev in a.m. do have bouts of diarrhea and I can taste salt in my foods. However, it is slowing down the disease.
Charlene Marshall
Hi Mary,
Thanks for reading my columns and reaching out via the comments. Glad to hear the immodium is helping with the Ofev side effects! The oral immodium didn't seem to work for me, but the sublingual (under the tongue) dose was amazingly effective. I've heard others say the same about the sublingual dose as well. If you find the regular immodium isn't helping, maybe give that a try. Glad it is so far for you, though!
Charlene.
Richard Cooper
I have been on OFEV now for about 20 months. I am 2 years in to my diagnosis of IPF. The OFEV is keeping it at bay so far and the side effects are a little tough a times but versus the obvious I'll take it and be thankful. Main problem I have is the gastro issues. Mainly diahhreah 24/7 and very little help comes from anti meds. I have not lost any appetite or have any problems eating. I have regained a lot of energy and breathing is much better. I also recommend to anyone with IPF to get a c-pap machine to sleep with. I'm positive that has helped me greatly as well.
GEORGE S TIFFANY
I was diagnosed with IPF in August 2000, and went on a clinical trial with Ofev in April 2002 at 150 mg twice a day. I have experienced a slow decline since then, but feel the "slow" is most probably due to Ofev. The major side effect is diarrhea and I take anti-medication first thing in the morning. This usually covers me for the entire day, but not always. At that point, a take a second anti which seems to correct the problem.
Charlene Marshall
Hi George,
Thanks for reading my columns and getting in touch via the comments. Glad to hear you feel the "slow" decline is attributed to Ofev, I hope this is the case for all of us :) Many can certainly relate to the GI issues, and I'm glad the anti-medication helps. I hope this continues to benefit you and reduce the GI issues associated with Ofev for a long time! Thanks for writing.
Regards,
Charlene.
Charlene Marshall
Hi Richard,
Thanks for writing and sharing about your experience of Ofev for about 20 months now. Glad to hear the anti-fibrotic drug is keeping it at ba for you; it is just the pesky side effects that sometimes make it difficult to deal with huh? Have you tried sublingual (under the tongue) immodium to help with the GI issues? The regular oral dose of immodium wasn't enough for me but the sublingual tablets have been life-saving! Thanks for sharing information about the CPap as well. I'll look into this!
Charlene.
Jackie Kalina
I can not find sub lingual meds. Do they sell them in Canada?
The stomach pain is too much for me.
Charlene Marshall
Hi Jackie,
I'm so sorry to hear you're dealing with the wicked stomach pain from Ofev. I've heard a few people unable to find the sublingual Imodium tablets here in Canada, but I've never had trouble finding them. They should be in the same section as the regular tablets, but maybe check with the Pharmacist? If they don't have them, they should be able to order them for you or recommend where you can get them. They might be available on Amazon too. I hope that helps!
Charlene.
John Kane
Diagnosed with IPF 18 months ago. On OFEV for just over a year now. I also use a CPAP with 2 liters of O2 at night. No loss of appetite or changes in taste, but some GI issues. I have also noticed, lately, an increase in emotions. Not sure if this is the OFEV or just circumstances.. Thanks for your post Richard.
Charlene Marshall
Hi John,
Thank you so much for reading my columns and reaching out via the comments. I have also had some GI issues as a result of Ofev, and tend to manage them with diet and over-the-counter medications. I hope you've been able to manage yours as well. I share the increase in emotions symptom too; irritable, easily angered or upset. Not sure if these are related to Ofev, I'd hazard a guess they're more related to circumstance. What are your thoughts?
Char.
Linda Goetz
I’m on oxygen at night only, because the drug company said it might make me feel better. I really can’t tell any difference but continue to use it. I had asked my pulmonologist if a c-pap machine would help. His answer was no, it wouldn’t help my IPF. I continue to take OFEV 150 2 X daily. I have a hard time taking it 12 hours apart, because I can’t eat early morning. It’s usually 10 hours apart. I’ve not progressed anymore at this point, I’m in the medium range. I’ve been on OFEV 14 months. I’ve gotten through the worst of the side effects, but still have diarrhea 2 or 3 days a week. I do have pain in my stomach everyday & feel nauseous some everyday & take a RX zofran most everyday to feel better, from The nausea. I also take tums & gas-x a lot of days. I’m going out more then before since the diarrhea has let up, but always carry anti diarrhea meds with me. Prayers for all of you going through this disease. Hang in there. Try to stay active.
Marilyn
I am 80 years old. I was diagnosed with IPF in 2014. I began Esbriet, and experienced nausea to such an extent that I couldn’t continue. I heard about Ofev while in pulmonary rehab and got a prescription through my dr. I started ai 150 twice a day, but experienced so much diarrhea and nausea that the dr reduced me to 100/day. I still have some diarrhea, but manage it with loperamide. My dr told me I didn’t need to see him for a year in January, as I am holding steady although with a slight increase in cough. I will have hip replacement soon with a spinal anesthesia so I can continue to exercise properly. I don’t take it every 12 hrs, but try to, and maybe once a few weeks I’ll miss a dose. So far no oxygen. My taste buds have changed, and I eat more bread than I used to, it seems to help settle any nausea and makes me more regular. I’m watching my liver function carefully and drink only a little white wine and rarely a cocktail.
Charlene Marshall
Hi Marilyn,
Thank you so much for reading my columns and reaching out via the comments. So glad to hear you're doing as well as you are (ie. no oxygen) with being diagnosed back in 2014. That is so encouraging to read! Glad with the reduction of Ofev to 100/mg that you can tolerate it better and have loperamide to help with the side effects. Goodluck with the hip replacement coming up, and I hope Ofev continues to be tolerable for you. I also enjoy my white wine occasionally! ;) Take care and keep in touch with how you're doing, I'd love to hear!
Charlene.
Jackie Kalina
Hi Marilyn,
How are you doing now? I am 80 years old and was diagnosed in April 2020. I am not the same person. At this point, the meds are worse than the disease. I still have good oxygen levels, no cough But GI is taking me down at 150 mg 2X a day. I learn a lot from these messages thought I hate the reminders of what i have. I have always been healthy, very healthy. Good to be quarantined, as I am afraid to stray too far from home. I can not find Imodium sub lingual. Just realized my taste buds have changed. Didn't realize it was from the meds.
William Mattila
I too. Have IPF for a long time. Over 15 yrs. I started OFEV 1/18 and was taking stool softeners. Imagine that? Got rid of them 6mo ago. Now I go three times a day. No squirts.sorry is terrible meds for terrible disease. Am gaining a little ground. Keeping it at bay. Breathing stable. Taste is off and metallic taste too. Mentally is a issue with my other meds I don’t sleep good get tired too.
Charlene Marshall
Hi Bill,
Nice to hear from you, thanks for reading my columns and getting in touch via the comments. Sounds like you're tolerating the Ofev okay since getting rid of the stool softener, that is great to hear and I hope it helps continue to keep things at bay for you! My taste is off as well, wish I could figure out the cause of the metallic taste I have in my mouth. Any thoughts on that? Take care and thanks for writing.
Charlene.
William Mattila
I would say the meds and stress. I know about the metallic taste when I get nerves.
Charlene Marshall
Hi Bill,
Thanks for getting back in touch with me! Adding stress to the mix of worsening side effects makes sense, I could almost track it to when I am feeling stressed and the metallic taste. Hmm.. I think you're onto something!
Jackie Kalina
15 years? That gives me hope but the meds are almost unbearable. I have been very healthy ALL my life. I am now 80 and was diagnosed last April 2020. No oxygen, no coughing , but am so miserable with meds. I keep hoping they have made a mistake, do we ever get over that delusion? Taste is off. I live in California and can get Cannabis gummies (legally) to help me sleep. One problem solved. Never heard of anyone with 15 years!!!!! YEA for you.
Mike
I was just told yesterday I have IPF and was told about the 2 meds. I stopped at the pharmacy to ask the cost and they told me both of them would cost them $10,000 for a 45 day supply. There is no way on God's green earth that I can pay that or a part of that if my insurance pays for some. Do all of you pay that much?? Is there a less expensive option perhaps in Canada or Mexico?
Charlene Marshall
Hi Mike,
Thanks for reading my columns and reaching out via the comments. So sorry to hear of your recent IPF diagnosis, I hope you're gentle with yourself these few days... they can be overwhelming! There are alternative options out there for paying for the drugs, oftentimes patients just need to get creative in finding them. Feel free to join our forums and check out the following thread on both Esrbiet: http://pulmonaryfibrosisnews.com/forums/forums/forum/esbriet-pirfenidone/ and Ofev: http://pulmonaryfibrosisnews.com/forums/forums/forum/ofev-nintedanib/ ... lots of information here on how patients obtain these drugs. Best of luck!
Charlene.
Larry G Reverdito
Open Doors issues Grant's. There usually no copay
Charlene Marshall
Hi Larry,
Thanks so much for reading my columns and sharing this resource with us! I'll be sure to remind our forum members about this resource as well, very good to keep in mind. Thanks again for sharing.
Charlene.
Hans Fink
Hello Mike, Yes, the OFEV is very expensive. Luckily for me it is free because I live in Canada & we have universal healthcare. (in the USA I think you call it "Socialized Healthcare"). Hopefully you will someday get the benefits of such a system as we have in Canada.
I take OFEV twice a day at 150mg a dose. The side effects are manageable, but I do get the GI symptoms. Some weeks are better than others. For a while I lost my appetite & lost some weight. After being on the program for about 3 months the appetite is coming back though I still have no desire for any alcohol, which I used to enjoy with dinner. Every morning when I get up, I tell myself that IPF will never get me down & I will feel better every day. With continued research, who knows that a cure or new meds will come to the market to help us patients to stabilize the condition. Good luck & good health to everyone.
jackie Kalina
I loved hearing your positive message. I am not as positive. keep wondering if the meds are worth it. Terrible GI problems, burning stomach pains, tired, no energy. Have been on meds for 3 months.
I was always very healthy and do not think is life. Hoping for a better med. Right now, no oxygen, coughing or feeling out of breath, Just debilitating stress from meds. I am 80 year old woman. I always thought I was very strong, but feel like a weak kitten.
Frank Loeffler
I would love to hear the impact on my fellow IPF members who are taking OFEV if they (like I do) enjoy 2 or 3 glasses of wine weekly.
Several have mentioned heavy duty headaches of hangover type symptoms.
Anything else?
I am new to this environment having just completed my first two months of 100mg OFEV and moving next month to 150mg dosage of OFEV.
Charlene Marshall
Hi Frank,
Thanks for reading my columns and reaching out via the comments. I am on Ofev and have found our PF forums, particularly the one about Ofev very helpful: http://pulmonaryfibrosisnews.com/forums/forums/forum/ofev-nintedanib/ ... I still enjoy 2-3 glasses of wine weekly too, and the only thing I try to be more conscious/aware of since starting Ofev is my liver function. This is monitored regularly due to the drug and I am aware that alcohol of any kind can worsen the liver so I am just mindful of that when I think about having some wine. Hope you're toelrating the Ofev okay so far! Take care, Charlene.
Heather Tidwell
Just try to drink a big glass of water with your wine. Im pretty new to ipf and ofev, but I have been ok with a couple glasses of wine.
Annette Merrill
I am 66 years old and was diagnosed with IPF in October of 2016. My Pulmonologist could give me no encouragement at that time as to whether I would live to see the holidays that year. He's a good doctor, but has a lousy bedside manner. Well I'm still here, for what it's worth, but getting weaker by the month. I was started on Esbriet and oxygen from 2016 up to March of this year, 2019, and am now on Ofev (also still on oxygen). These drugs are ridiculously expensive! But the makers of both provide help with paying for them. Your doctor should know how to assist with directing you on how to contact the manufacturers for that.
After stopping Espriet, I found that it had been causing deep depression for me, which vanished when I switched to Ofev. Of course now I must deal with a whole new set of side effects and am much weaker than I was in 2016. Additionally, all these side effects cause their own depression and anxiety. Hard to be motivated to go on.
Although I have appreciated reading the column by Charlene, I'm much more interested in hearing from folks over 60. Life just seems so difficult at this point, and I would love to hear any helpful tips from anyone over 60 on how to view whatever time I have left in a positive light. Also, is anyone aware of what "end stages" of this disease looks like? Will I just keep breathing less and less until I stop entirely? Are there milestones or warning signs to look for? As mentioned previously, my pulmonary doctor does not seem to know how, or is unwilling to discuss anything of a personal nature, so I'm eager to find other sufferers who might be willing to share.
Thanks for listening!
Charlene Marshall
Hi Annette,
Thanks so much for reading my columns and getting in touch via the comments. I appreciate the time you took to share your story!
I agree with you re: your doctor and that he/she should know how to direct you to the manufacturers of this drug to help with payment. They are both very expensive here as well. Wow, I'd never heard of someone being able to conclude the depression from Esbriet, that is really important for others to be aware of. I am also on Ofev and it brings with it a whole slew of GI issues, which can make it even more difficult to go about your daily activities. Have you tried the sublingual immodium tablet? For some reason this method of consuming immodium (under the tongue) works 1000 times better when it comes to managing GI symptoms than the oral tablet does. Just trying to get that little tip out there!
Are you a member of our PF forums yet Annette? Lots of people/discussions on there about living with IPF over 60. You can sign up on the following link: http://pulmonaryfibrosisnews.com/forums/ Feel free to check it out, lots of topics that might be of interest to you!
Charlene.
Dennis Hemingway
I have IPF,diagnosed and been on OFEV for2 months! The diahrea, food taste horrible,I am doing Laser Therapy performed by a Chiropractor, which breaks up the scarring and heals the lung under it!!! I prefer to get rid of the scarring instead of waiting for it to kill me, everybody should check into this, can not hurt!!! Drug manufactures just want your money!!!
Charlene Marshall
Hi Dennis,
Thanks for reading my columns and reaching out via the comments. The side effects from OFEV can be awful, I agree. Sorry to hear you're struggling with them! Laser Therapy has been a very popular topic of discussion among our forums: http://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy-results/ ... with lots of people noting success. Hopefully the laser therapy is going well for you too. Thanks for sharing that you're trying it! Best of luck to you and thanks for writing :)
Charlene.
Deborah LaPointe
Laser therapy?? I’ve never heard of it. Thank you so much for mentioning it. I will definitely check into that, I’m willing to try anything at this point. I was diagnosed a year ago and have been on different meds with no good results. I just seen my pulmonary doctor today and she wants to try me on the OFEV so I’ve been reaching out anywhere I can to get information on it... and people’s experiences with this med. Thank again for mentioning laser therapy
Charlene Marshall
Hi Deborah,
Thanks for reading my column and connecting via the comments.
While we can't endorse any type of medical or alternative therapy/treatment for IPF, many members of our PF News forums are seemingly benefitting from the laser therapy. There is lots about it on the forums if you want to read more about it, and like you, many of us are indeed willing to try anything at this point. Feel free to connect with me any time - I am also on Ofev:)
Take care,
Charlene.
ShirleyCrowell
Interested in learning about lasertreatment
Harletta Carthel
Has anyone taken Ofev and Esbriet at the same time? My doctor is recommending taking both I have been taking Ofev 150 since January of this year and hve not started the Esbriet. I am starting to have more stomach aches. Does anyone have an idea to soothe this pain?
Charlene Marshall
Hi Harletta,
Thanks so much for reading my column and reaching out via the comments. I've not personally taken Ofev and Esbriet at the same time, but I think others on the forums (http://pulmonaryfibrosisnews.com/forums/) have, it might be worth asking there? I think I'd want to understand why the doctor thinks both are necessary, just due to the side effects that might accompany taking both but that is just my initial thought as a patient. Please let us know how it goes.
Charlene.
Terri Banks
I dont understand taking both meds. I dont dee the benefits
Charlene Marshall
Hi Terri,
Thanks so much for reading my columns and reaching out via the comments. I don't believe (though I could be wrong, and am not a medical professional) there is much supporting evidence for patients with IPF to take both Esbriet and Ofev. I've only heard of this offered a small handful of times, usually it is one or the other. Has your doctor recommended you take both? If so and you're comfortable, I'd love to hear his/her rationale for this to better understand. It doesn't seem to be something commonly offered.
Take care,
Char.
Sharon Peterson
Thanks for the opportunity to share and learn more about Ofev. I have been using Ofev for less than 2 months. I have been diagnosed with sarcoidosis and recently chronic bronchitis. I get very short of breath when I try to do things that take physical activity. It also causes me to have coughing fits. Since using Ofev I have not had much gastrointestinal problems. Nothing that a dose of Imodium doesn't solve. I have had more headaches and am so tired all the time. I was wondering if anyone has had an increase in bad dreams? My dreams seem to be about work and anxiety. Odd since I have been retired for almost 10 years. I've tried taking my anxiety med before bed. Hasn't seemed to help! I just started coughing a bit less but have not realised much relief yet! I have had the Sarcoidosis for at least 10 years probably longer. I have been having periods of feeling hopeless about getting any better. It seems like I have been dealing with this forever. My quality of life seems to be getting worse especially with the fear of covid. I don't leave my condo unless it is necessary. I have had to stop watching the news, very often, as it was triggering my anxiety. I honestly have much to be very thankful for. I'm hoping the medication starts to make a difference. Thanks for listening.
Charlene Marshall
Hi Sharon,
Thanks so much for reading my column and reaching out via the comments. Sorry to hear of your recent diagnosis', a friend of mine has sarcoidosis as well and it can be a tough disease to manage. I'm really glad to hear you aren't dealing with any GI side effects of the Ofev, that is amazing to hear, and unfortunately yes, headaches and fatigue can be either drug side effects of caused by the illness, I find it hard to tell. I've not had bad dreams that I can link to the disease or Ofev, but others may have experienced this, you could ask in the PF forums to see if others have? Its a really good place to connect with other patients too, very supportive and kind. Take good care and feel free to write anytime, we're always here to listen.
Char.
Jim Schee
Charlene: I am grateful for your column. It is a great opportunity to learn from those similarly afflicted.. i am 81 years old. I was diagnosed with ILD with scarring 23 months ago. Caused by auto immune issues I am told. I Went on 60 mg Prednisone then to 40 then 20. Finally.15 for most of last year. Now on 10 mg. Started Mycophenelate in August in increasing doses until maxed out at 1250 mg twice a day. Started on OFEV Feb 1 - 150 mg twice day. No issue with diarrhea thank goodness, but I am losing a little weight but real issue is this metallic taste and a oily feeling on the tongue that leaves a terrible taste in your mouth after eating. Thats my downside of OFEV. BRIGHT SIDE is my coughing has been reduced by at least 75 percent and for that I am grateful enough to tolerate the metallic taste. Any advice you could pass along on getting past this metallic taste would be greatly appreciated. Thank you so much for your column. I know I will benefit from continuing to read it. Jim Schee
Charlene Marshall
Hi Jim,
Thanks so much for reading my columns and reaching out via the comments. Sorry you're dealing with this cruel disease too, and glad you were able to titrate down on the Prednisone, start Mycophenelate and tolerate the OFEV, that's great to hear. I don't have the experience with the metallic taste, interesting. This might be a good question to pose on the forums: http://pulmonaryfibrosisnews.com/forums/ to see if others experience it and how they manage it? The only thing I can think of that would work in theory is a good mouth wash.
Take care,
Char.