Starting Esbriet

[Bill Hunt]

I am being coerced into taking Esbriet so I have been reading all your posts from others. Not sure if I want to take it at this time. I am newly diagnosed so this is all new to me.  I have given up and accepted getting a “simply go mini concentrator”.  I know that will help me to exercise more without getting light headed. I am starting pulmonary rehab next week.  Fortunately, I am feeling well for a man of 85 except when exerting myself.  I have enjoyed reading your news letters and have learned so much.  Keep them coming.

[Charlene]

Hi Bill,

Sorry to hear of your experience with being coerced into taking Esbriet, I think you’ve done the right thing and spent some time reading / investigating into this drug and whether or not it is right for you! Sometimes it is easy for doctors to advocate and push us into doing what they think is right, or what is the “best” protocol for our illness, but we have to feel comfortable with it. Kudos to you for looking into everything first!

I wouldn’t view your obtaining an oxygen concentrator as giving up Bill, I think (as difficult as it is) it is a wise choice, and one that shows you’re taking care of your needs. Accepting oxygen less than 6 months after my diagnosis, and at age 28, was terrible but I am glad that I did it. It helped me feel better physically, reducing symptoms that came with being under-oxygenated, and it also made me feel better mentally, knowing that I had oxygen available to me if I needed it.

Goodluck with pulmonary rehab- please let us know how it goes! This was something that was very helpful for me, so I hope it is for you as well. I am also very glad to hear that these forums have been helpful for you, please feel free to connect anytime and goodluck with the decision on whether or not to start Esbriet.

Sending you nothing but the best Bill.

Warm regards,
Charlene.

[Pamela Green]

Bill ( @bill-hunt) I am most likely starting Esbriet next week. Reluctantly as my reaction to Ofev was not pleasant and I was taken off after 3 months due to increased liver enzymes.

May I ask you were you found all your information regarding Esbriet.

I was not good on Ofev. If I did not have the “runs” I was vomiting, or nosebleeds. If I sat down I feel asleep. I really was a waste of space and 2 days after stopping I felt great.

An Auto immune connection has just been ruled out and that’s why Mass General want me on Esbriet or Prednisone.

I am reluctant as although I feel I should try and also feel better with quality rather than quantity of life.

A new grandchild gives me incentive to get to October so I can visit him in Canada.

I wonder if my side effects are due to my weight now 107 pounds.

Feedback from anyone would be really helpful.

 

My prayers are with all who face these difficult decisions

Pamela

[Dianne]

Hi, I started Esbriet one month ago.  I had my first blood draw to check my liver.  I am having a lot of stomach acid and I don’t know if it the med or acid reflux.  I am currently scheduled to have endoscopy to check for GERD. The other symptoms are fatigue and burning of skin if exposed for more than 15 minutes.

I was diagnosed with IPF in December 2017.  Pulmonologist at Brigham’s & Women’s, Boston prescribed it.  Not sure what my liver will show?  I had used my prescription drug plan plus applied to Genetech foundation.  I really don’t know how they track if this medicine really does slow the progression or your own lungs slowed the progression?

[Charlene]

Hi Dianne,

Thanks for getting in touch with us and sharing a bit about your experience since started Esbriet one month ago. Those sound like awful side effects, and I am so sorry you are experiencing them! Did you ever have troubles with acid reflux before your IPF diagnosis or before starting Esbriet? I know sometimes acid reflux can go undiagnosed, and unfortunately be linked to IPF. Although I hope it isn’t GERD, it would be nice for you to have some answers I suppose and be able to address the unpleasant side effects you’re having. I’ll keep my fingers crossed for you!

Broadly speaking, Esbriet is an anti-fibrotic drug used to slow the progression of IPF and for some folks it works and others it doesn’t really make much of a difference unfortunately. I have heard that others have stopped it because it wasn’t doing much for them, and they didn’t want to deal with the side effects. It is good that your doctor is being proactive though in checking your liver, as this can be a real problem for people on this medication. I hope it doesn’t show anything!

Please let us know how you make out, and know that there are lots of people who can help by sharing their own experiences with you. Take good care,
Charlene.

[Roger Wenschlag]

When I first started Esbriet I experienced some stomach issues when taking the drug.  It felt like I was swallowing battery acid.  Eating solid food and/or taking Tums eliminated the problems.  I called the lab who makes it and they said taking Tums will not affect the drug’s efficacy.

[Paul F Nichter]

My Understanding of how the IPF progression is measured is by the breathing tests ( which I love to hate) and the six minute walk, comparing those results to previous.

[Charlene]

Hi Paul,

Yes, you’re correct: measuring your PFTs against older ones is usually how physicians measure the disease progression. I’m with you: I like finding out the information from my PFTs but I despite them because they’ve become quite difficult for me to complete as my lungs worsen. Wishing you well – thanks for writing.
Charlene.

 

[Barbara Davidson]

Hi I am Barbara and live in ynorzh Central Tx.  I was told I had COPD 3 years ago and wS sent by my Pulmanologist here to Baylor Hospital in Texas to see a  Pulmanary Specialist. That was about a year ago and found out my diagnosis. Went again last week and will be starting Esbreit as soon as funding comes through for me to pay for it. I have noticed in pictures that not many are on oxygen? I have been obn it 24/7 for 3 years now. I also had to retire which I thought I would love but rather be working just no energy and fatigue is so much worse now. I am 68 and can’t wait to start meds and Pulmanary rehab. So ready to feel better and make slot of friends through these support groups

[Charlene]

Hi Barbara,

Welcome to the PF forums — I’m glad you’ve found us!

So sorry to hear of your diagnosis one year ago, I remember this well (still!) as I have just passed my two year diagnosis mark. I am not on Esbriet, but OFEV and so far it has been helpful for me. Goodluck with starting Esbriet! Definitely have a read through this thread on the forum, as lots of wonderful people have commented here with how starting Esbriet went for them. Surely, you’ll find some good tips to help make the transition onto this anti-fibrotic medication a bit easier for you 🙂

Some of us use oxygen and just don’t have it in our profile pictures. Some are on it only with exertion, and some are on it 24/7. When do you start pulmonary rehabilitation? This really helped me, so I do hope it helps you as well. Is it through Baylor?

The lack of energy and fatigue is very frustrating, I agree. How is your sleeping, do you find it difficult to get a good night’s rest? I do and this certainly contributes to my fatigue, even more than the disease itself but some folks on here also gave me some tips to help with my sleeping.

I look forward to getting to know you a bit more through these forums as well. You’re most welcome here, and please feel free to reach out any time!

Warm regards,
Charlene.

[Joyce Douglas]

Hi Charlene.  This post is in response to your question as to how I found out about the Inspiration Program from Ottawa.

My Dr. (B. Bookatz) in Brandon MB, registered me to begin the medication – Esbriet starting in June of 2017.  Just shortly after I got back home from the initial hospital stay where and when I was diagnosed with IPF on May 6th, 2017, I received a phone call from one of the Nurses in charge of the Inspiration Program out of Ottawa. I have spoken to several nurses over the year.  However, at first I received a call from the nurse, about three times a week after receiving the initial package of Esbriet. They wanted to be certain I knew of the proper way to take the meds.  Also, they wanted to know of ‘any’ side effects that I was experiencing and how I was treating them.  I had some of the usual initial ones, which did eventually go away – headache, stomach ache, stiffness in joints and muscles, etc.  None of my side effects were bad enough to cause me to want to stop the meds.  The phone # of the Inspiration Program is: 905-444-4444. This put me in touch with the current Nurse in charge and she/he was able to answer my questions, provide information as to if this was normal, etc.  They were extremely caring and supportive and told me to phone at any time of night or day and they would speak with me.  I do not know if others receiving this Esbriet medication were on the Program or not. I had some questions about stopping my ‘Homeopathic Medications’ and my other Over the Country medications.  We did decide that I should stop them in order to give the Esbriet the best chance of working it’s best on my lungs and fibrosis.

 

[Charlene]

Wow, thank you so much for sharing Joyce. I am so happy to hear that this was such a positive experience for you! I am also really curious to hear from others in Canada who may have had this experience; it is the first time I’ve heard of anything like it, although I am pleased as it has the potential to make such a difference to patients…

I’m going to spend some time looking into it, and reading more so that I can feel educated and share with others who may qualify for the Inspiration Program.

Thinking of you today as you reach your 1 year diagnosis date today. Did you do anything for you today? I spend a lot of time reflecting on my diagnosis anniversaries, but I know for some people they are too significant. Curious to hear how you felt today, only if you feel like sharing. If you don’t, that is totally understandable too.

I hope the weather in MB is starting to become as nice as it is in Ontario!

Take care,
Charlene.

[Michael Lamkin]

I just started week 3 of taking Esbriet and in addition to some of the symptoms I’ve noticed besides those I’ve already seen mentioned is some increased shortness of breath and my cough seems to have much less production than before. Just wondering if anyone else have had similar experiences or are they possibly just the progression of the IPF? I really appreciate these forums and find them very interesting and informative!

[Charlene]

Hi Michael,

Thanks for getting in touch and sharing a bit about your experience of starting Esbriet. This is always a popular topic, and one of interest to those of us taking the anti-fibrotic medications. Do you find your shortness of breath is worsening since starting the Esbriet? Hopefully not, and although I can’t speak to this experience since I am on OFEV vs. Esbriet, but I don’t think an increase in shortness of breath is ideal unfortunately. Also, I know a dry cough can be more irritating and frustrating than a productive cough, as it doesn’t feel like there is any relief. Hopefully someone on Esbriet can help provide you a bit more insight!

Has anyone experienced these side effects as a result of starting Esbriet? We’d love to hear from you!

Take good care,
Charlene.

[Michael Lamkin]

Hi Charlene

I received a call from my pharmacist yesterday to check on how I was tolerating the Esbriet. I mentioned the dryer cough and increase in my shortness of breath. She said that since Esbriet only works on the cellular level it would not effect my breathing or cough. Since we’re in the middle of our “monsoon” season here in Arizona (much more humidity than usual) she felt that the humidity was most likely the cause of the things I mentioned. Anyway, I’ll soon be getting the pill which is taken as a single dose 3 times a day instead of the 3 pills 3 times a day.

I hope all is well with you and really appreciate your responses to my posts.

Michael

[Charlene]

Hi Michael,

Great to hear from you, thanks for your reply and giving us an update!

Oh, that is really interesting to hear from your Pharmacist re: the symptoms being more related to weather than the medication. I suppose overall that is a good thing, since the weather is bound to change (and hopefully improve your symptoms) although sorry you’re experiencing them at all. Hopefully they subside soon for you!

Any other symptoms that have arisen as a result of the Esbriet? Sounds like you’re otherwise tolerating it pretty well which is great. I’ll keep my fingers crossed that the single dose pills go well for you.

Thanks again for writing and take care!
Charlene.

[Raymond C. King]

Hi Charlene,

I still haven’t got my insurance acceptance for the Esbriet yet, but I went to my Pulmonologist July 18 and after more tests and an X-ray of my lungs said the severity of my IPF hasn’t changed since my last X-rays in April. He apologized for my not getting the Esbriet okayed yet but said his nurse has been working hard on what is needed to get the OK. His nurse said she has sent in the documentation they said they needed on 2 different occasions and they keep telling her they didn’t receive it. She said she didn’t know how else to get it to them the required information. She said she sent it by Fax one time and after they said they didn’t get it, she mailed it to them. She said she would call them again and see how else she should send it and let me know. I guess I’ll just have to wait longer to get the results and Rx. The doctor was hopeful I could start on it, so he could see if I tolerated it OK, so he made another appointment for September hoping I would have received it and could evaluate it for any side effects to continue by then. We still don’t know what form it comes in for me to grind it up or extract the liquid from the capsule, so I can take it by my J-tube. Does anyone know if it is in a solid tablet or a powder or liquid in a capsule?

Thanks,
Ray

[Charlene]

Hi Ray,

Great to hear from you, and I hope you are doing well! Thanks for writing, I think I dropped the ball on getting back to you in our previous correspondence, sorry about that. So glad you got back in touch with us 🙂

I’m really glad to hear that the tests you recently had didn’t reveal any disease progression since your scans in April, that is good news. I’m also glad to hear the nurse has been working on what you need to get approved for Esbriet. It boggles my mind sometimes about how long these things can take, and how frustrating it can be to deal with insurance/pharma companies! I am dealing with our insurance company still from the accident in the US last December, and it is unbelievable some of the things they are doing to deliberately delay in the process. All I know, is that I could never work in insurance… I wouldn’t have the heart to do it! I hope things resolve for you soon and that you do  get the approval to go on it by your September appointment. I’ll keep my fingers crossed for you 🙂

I think the Esbriet is in a pill form, from what I’ve heard from others although I can’t confirm that cause I am not on it. Keep us posted!

Take care,
Charlene.

[Claudia Sundberg]

Hi, I am Claudia and I was diagnosed with IPF in May of this year after having an unexplained cough for 6 months.I had every blood test you can have to rule out a cause. A VATS lung biopsy showed UIP. My pulmonologist only suggested Esbriet and I started that in June. I am now in my 8th week and have only a few side effects on it-some stomach isssues and fatigue. Right now my case is mild. I am not on O2 and have not done any pulmonary rehab. I am part of Genutech’s Inspiration program and they have sent me some helpful tools like a tracking journal and pill container. I find I get more help and assistance from the specialty pharmacy pharmacist than I do from the nurses at Genutech. I have not heard from my doctor since starting the medication and don’t go back until the end of September. I really appreciate this forum for information and seeing what helps other people. Thank you Charlene.

[Charlene]

Hi Claudia,

Thanks for getting in touch with us and welcome to the PF forums. So sorry to hear of your diagnosis, and the prolonged, constant cough. I think that is one of the most frustrating things of this disease! I do hope it has subsided a bit for you now (although I know it may not have..) ?

I am glad to hear you started on Esbriet so quickly, and seem to be tolerating it well. This is important, and glad it was an option for you. What was your experience with the lung biopsy? This is always a popular topic among folks on the forums because some doctors do them and others don’t, and some patients, understandably, are quite against the lung biopsy. I didn’t have one for my own diagnosis so I often can share any experiences with them.

So glad your experience with the specialty pharmacy has been positive as well, that is great news. I know others on this forum will appreciate hearing that information!

I hope you continue to do well Claudia, and that your disease remains as mild for a long time. I look forward to getting to know you a bit more on the forums, and so glad to hear you find them helpful. Please feel free to write anytime, you’re among friends here who truly “get it”.

Kindest regards,
Charlene.

[Michael Lamkin]

Hi Charlene and Ray

The Esbriet I take is a capsule in powder form and can be opened if necessary (unless the doctor says otherwise) which I’ve been taking as 3 257 mg pills 3 times a day. I’ll be starting the 771 mg pills (1 pill 3 times a day) as soon as I receive them. I don’t know what form the higher dose comes in but if no one else responds I’ll let you know when I receive them. It’s also possible it comes in different forms.

Thanks Charlene for responding to my post and so far no additional symptoms!

Michael

[Charlene]

Thanks so much for this thoughtful reply Michael! I am sure this information is helpful to Ray, especially since I don’t have any experience with Esbriet. Since the lower dosage is in a powder form Ray, will this be easier for you to get the medication into your system?

If you wouldn’t mind Michael, please do let us know what form the higher dose comes in, I am curious to know! I’ll also keep it in the back of my mind for others who might ask in future.

So glad to hear the side effects remain at bay, and manageable. I’ll keep my fingers crossed for you that it remains this way with the higher dose. Thanks again for sharing this information 🙂

Warm regards,
Charlene.

[Michael Morale]

Hi Claudia, thank you for your comments about the forum. We’re glad that you find it helpful and we hope that you continue monitoring the forum. Please feel free to ask questions and we will do everything we can to answer any questions that you may have. Have a wonderful day.

[Michael Morale]

I’m glad that you haven’t had any additional symptoms Michael. Charlene is a great source of information and I’m glad that you’re part of this forum. Please let us know if we can be of any further assistance to you.

[Charlene]

Thanks Michael!
I’m so glad to be part of this online community, it is filled with some really great people 🙂

Have a great weekend!
Charlene.

[Raymond C. King]

Hi Charlene,

Don’t be sorry about not getting back to me earlier. You seem to be so busy with this forum and other things, I don’t see where you find all the time.

I just received a 2nd call today from the Dr’s nurse and she said she talked to them about their insurance denial. She said they told her the person she needed to talk to about denial decisions would not be back until next week, so she could talk to them then.

She also said she had talked to the Specialty Drug Department and Esbriet. Esbriet is going to send me a 30-day supply strip of it.

She said she had re-contacted my insurance company about the denial and they had said I was below one of Esbriet’s minimum reading that was required for me to get the RX. She talked to Esbriet and they told her that the out of requirement minimum reading was not an actual needed requirement. I guess if it was only one reading that was out, that they are waiting for you to be on your death bed before you could get a drug that would have prolonged the progress of IPF. Anyway, maybe I can get the full RX okayed next week. Meanwhile, in a few days I should be able to try it and see if I can tolerate it.
I guess you know all about how hard it is to go through an insurance company with your battle over your NY auto accident. I think the law provides for extra time for you to get so old, disgusted and broke that you will settle for anything they offer for settlement. I hope they settle with you soon in a good way. It always seems that if you get a good settlement, your attorney will take the majority of it.
I think that Claudia Sundberg and Michael Lamkin’s responses have pretty well answered my other earlier questions about IPF and Esbriet.

Thanks, as always for responding to my concerns and questions. I really look forward to your posts and interesting information. You seem to have a lot of helpful information for everyone.

Ray

[Charlene]

Hi Ray,

It’s super great to hear from you – thanks for getting back to me so quickly! Well, as of recently, I have the time because I have not been sleeping…. hahah. All kidding aside, sleep has seemed to elude me lately which is incredibly frustrating as everything feels worse when I’m tired. On the plus side, I suppose? I’ve been able to spend a lot of time on the forums, and just dabbling in different projects around the house. Thankfully, I think my sleep is coming back now though …. anyways, I digress…

I’m glad to hear that at least the Dr’s nurse was pointed in the right direction, meaning she will hopefully be able to get in touch with the person responsible for denials. Summer holidays are important for folks, but they really slow up the process of things, don’t they? I’ll keep my fingers crossed that she is able to connect with that person and hope that the conversation goes really well.

That is good news that they can send you the strip of Esbriet — is this only a one-time thing? They wouldn’t be able to do this more regularly for you, until the insurance piece is sorted out? This may be dumb question, and unheard of in the US, I just don’t know how drug companies in America works at all being Canadian.

Yes, unfortunately I am familiar with all of the “red tape” that can come with insurance claims, even though mine is different than trying to obtain a drug. The insurance company of the cab who drove us into a pole in the US sent us a cheque of a few hundred dollars with a) our names spelt wrong, so even if we wanted to, we couldn’t have cashed them anyways and b) there was a fine print clause saying that if we accepted/cashed the money then it voids the rest of our lawsuit. Thank heavens none of us did that. It’s pretty unbelievable the efforts they will go to in order to delay or try to get out of something… fingers crossed this will all come to an end soon, when the settlement portfolio is submitted next month. I am finishing up my impact statement right now, which actually has been one of the hardest parts.

So glad to hear Michael and Claudia answered your questions – people on here are so wonderful, and such a great source of information! Glad my posts are interesting for you, and I will most certainly keep writing as they are very therapeutic for me also.

Take good care, and until next time…
Charlene.

[Raymond C. King]

Michael Lamkin,

Thank you very much for your post. Your description of the Esbriet capsule was very helpful. It looks like I should be able to open the capsule and dissolve the powder in water to inject it by syringe and J-Tube into my intestines feeding tube. When I called Esbriet, they told me they weren’t sure if the capsule was able to be even opened or not. They were not very helpful about taking it in any other method other than just not crushing it and swallowing it with food as their instructions state. I must bypass my stomach as it is frozen. We crush all my medicines and mix with water.

Thanks again. Your help was much appreciated.

Ray

[Charlene]

Ray, I certainly hope there is a way you can try the medication that works for you. If you think of it, do let us know how you make out with the Esbriet when it comes, and how you’re tolerating it. Goodluck!

Charlene.

[Raymond C. King]

Hi Claudia Sundburg,

I find your information on Esbriet, and tools you get from the Specialty Pharmacist very helpful. It is kind of scary about just how IPF progresses in different people and how they are coping with it. I too did not sigh up for the rehab as the pulmonologist told me that I really didn’t need rehab yet as my 02 level was still OK. But I have only been diagnosed of having IPF for a few months.

Thanks again for you post.
Good luck,
Ray

[Claudia Sundberg]

Hi Charlene
I can address the lung biopsy by saying it was an experience. I had 4 holes in my side one was for the chest tube the others for the camera and retrieval instruments. I spent 3 days in the hospital. What no one told me at the time was the numbness and tingling from the nerves being cut. Almost 3 months out it is finally beginning to come back. I had the procedure done in MN and they actually sent the slides to U of Michigan at Ann Arbor because my doctor felt they were a great resource. So with that I got 2 opinions.
I want to thank everyone whose responded and I’m happy to have found people who “get it”.

[Charlene]

Hi Claudia,

Thank you so much for getting back to me and outlining your experience with a lung biopsy. I am confident that others will find your post helpful and informative as well!

I am so sorry to hear of your experience with the numbness and tingling, and even more upset to hear that no one told you this was a possibility. This was also my friend’s experience as well, and unfortunately she ended up with permanent nerve damage also from the biopsy. I am glad that this unpleasant side effect is starting to go away for you now, although I certainly wish it was sooner. I hope the two opinions from both centers were helpful for you, and thank you again for sharing your experience with us.

Please feel free to reach out any time.
Warm regards,
Charlene.

[Kathy witherspoon]

I’m going into my third wk starting full dose Wed.  Worried about full dose.  Side effects of fatigue, indigestion, and dizziness.  Curious how many others are being treated at University of Michigan Hospital in Ann Arbor, MI.

[Raymond C. King]

Hi Charlene,

Nice as always to hear from you. I really appreciated your sending me the other posts relative to some of my concerns about Esbriet.

I do hope you get your sleeping routine settled. As you stated it’s hard enough just putting up with the effects of this disease than to have other complications to put up with.

I am happy you asked Michael to let us know what form the higher dose of Esbriet comes in. My Pulmonologist said that over time, if I tolerate it the final goal of taking 9 pills per day, that he would change it to the larger dose that only requires you to take it 1 time per day. He just wanted the lower dosage so he could start me out slowly to check my tolerance to it.

It really was good news that Esbriet was sending me the trial strip without waiting for my insurance company authorizing a continued supply. I only hope they settle it before my trial period supply runs out. I know that Esbriet won’t continue to give me free supply when this trial shipment runs out. Maybe I will find out next week if the insurance company will give in. I will keep you posted on my progress.

Drug supply here in the US is rally a lot harder to come by than I hear it is in Canada. It seems a lot of people that have problems with price and supply of prescriptions here, go to Canada or Mexico to purchase them. I think the drug companies and suppliers are just making it hard on the people here and can get away with it because we have no other real choice.

I am very happy you and the others didn’t cash the checks that you received regarding the Taxi accident in NYC. Sometimes people do cash the settlement check offer unknowing that they will no longer be able to sue them or receive any other reimbursements. A lot of times they put that forfeiture fact in real small print on the check and when you cash it you are stuck later. I hope you aren’t ending up with any real bad problems as a result of the accident? Having to fill out the impact statement is bad enough. I hope you have a good attorney helping with any information you should provide them.

Take real good care of yourself. I love hearing from you.
Ray

[Charlene]

Hi Ray,

Thanks for writing and I do hope you had a good weekend! No problem re: sending the other posts, I hope they were helpful. This is a popular topic, so I know lots of good information was shared. No news on your RX yet for Esbriet?

Finally my sleep is starting to get better, thank you for your kind comments around that. I think I just needed to settle my mind a little bit, because once I started to feel a little bit better mentally around some of the things I was working through then sleep didn’t elude me as much. I am now on the other end, and almost sleeping “too much”…. 10+ hours per night sometimes. Do you ever get this pendulum swing where sometimes you can’t sleep and other times it feels like you’re sleeping too much?

That makes sense re: your doctor wanting to make sure you could tolerate the smaller dosage at a time first. I hope Michael lets us know as well. I actually just heard from one of the PR reps of Esbriet wanting to message me directly with more information to share with the forum, so I’ll  see what kind of information gets passed on and I’ll be sure to share it with the folks here if it is helpful.

I will keep my fingers crossed for you that news of your own supply comes through as positive before your test strip of them run out! I’ve heard so many sad stories of the US healthcare and insurance difficulties for getting drugs. It just breaks my heart…. money and availability of drugs should never be the determining factor over whether someone gets to live or die. It is so infuriating!

Thanks for your kind words re: the accident, it has been such a learning curve for all of us involved! Thankfully we didn’t cash the cheques, and I’m sure somewhere on it in fine print was a statement that if we cashed it we waived our rights to other reimbursements, including a settlement. Hopefully this will all be done by December of this year, although that might be wishful thinking. The only real permanent struggles I am having are persistent headaches and neck pain from whiplash and a diagnosed concussion, which I am doing rehab for. I also still have incredibly painful shins as the soft tissue was damaged pretty bad with extensive bruising right down to the bone. Hard to believe but 9 months later they are still sore to the touch even though the bruising has gone away. Thanks for asking, thats really kind of you 🙂

I hope you had a great weekend and are looking forward to a nice week ahead.

Cheers,
Charlene.

[Raymond C. King]

Hi Claudia,

Wow! After your post about the biopsy recovery problems, I’m very happy my pulmonologist told me he wasn’t going to take a biopsy as it sometimes has a bad recovery experiences and all it would show us is you have IPF. He said the Cat Scan and other x-rays show you have it. I hope all your bad recovery problems subside without any long-lasting effects.

Ray

[Charlene]

Nicely put Ray – I also hope Claudia’s side effects from the biopsy resolve without any real trouble! Have you done an HRCT scan Claudia? This is another excellent diagnostic tool (high-resolution CT Scan) for IPF and a lot less invasive. Likely it has been done, but just thought I’d double check 🙂

Charlene.

[Ray Hastings]

i am starting my3rd year on Esbriet . the things i have discovered is

(1) never take the pills on an empty stomach. (2) it its ok to miss a dose occasionally without starting over

another resource when your insurance turns down your request for coverage is your state’s insurance commission.  my experience in insurance coverage comes from  15 years employment with 2 health insurance companies .

i get my prescriptions from the VA which bills my insurance company.

[Charlene]

Hi Ray,

This is really helpful information for others to learn about – thank you!

I would assume that every state in the US has a state insurance commission, that patients could seek out as an option to pay for Esbriet? Hopefully this is an accessible option for others as well. Glad you’re able to obtain your medications this way!

Cheers,
Charlene.

[Raymond C. King]

Hi Charlene,

Thank you for your return message and all the other information you have solicited from everyone and passed on. They have been very helpful.

I hope you had a good weekend and went to the beach or something cooling and fun? You need to do something exciting.

Thank you for inquiring about us having a good weekend. It was fair. We had one of my wife’s niece and her husband visit us from Utah for a couple of hours on Saturday. My wife’s sister-in-law is celebrating her 92nd birthday and the niece was just catching us up on her health issues. Sunday was just kind of a sit at home and relax day. I spent a little time just cooking up a couple of the recipes I had downloaded to try. One came out well the other, I threw it in the trash. Nothing spectacular about it. I can’t eat much of anything, but I like to taste different things that sound good when I read the recipe or see its picture. I use my wife for a taste result to see if I should keep the recipe or throw it. I don’t know why I collect recipes, but I use to love to cook gourmet type food but since my stomach freeze dilemma and fatigue problems, I can’t stand very long, and I seem to get ill after standing very long, I usually can’t eat any of what I cook until sometime later or the next day but I taste it. I try not to eat anything after 3PM as it takes too long for the food to pass thru my stomach and it causes acid reflux at night if I eat late. It kind of cuts us out from going out to eat later in the day. After I cook something I always swear I’m not going to do it anymore but the hunger to try it just keeps coming back. Do you find eating causes you any problems with your IPF and fatigue problems?

This weekend will be spent going to kind of a big get together in a park with my wife’s sister and husband coming from Texas to celebrate their 65th wedding anniversary. I sure hope it won’t be too hot. It is supposed to reach the high 90s and Friday 100 degrees F. We have so many fires in our state and the states around us causing smoke, we seem to have all types of problems of the smoke getting into our lungs. We have had very little rain to clear it out and it seems to just settle in the valleys.

I hope the sleeping problem you had has subsided satisfactorily for you. Maybe after you get you sleep caught up, it will start to stabilize some. They say you can never catchup on lost sleep but maybe the 10+ hours sleep you have been getting will help somehow? I try to keep a set bedtime at 10PM and I feel rested enough to get up at 5ish the next morning. They say people need 7-9 hours sleep each night. When I initially wake up, I start thinking of things I wanted to get done that day and can’t ever seem to go back to sleep. I’ve never needed sleep very much and don’t nap in the daytime. If it gets light outside, I seem to wake up. I must take my medicines at 7AM and 7PM each day so that kind of sets the time we must move. Also, I must get on my feeding tube at 7PM so that all the IV food will run out before 7AM or it delays when I get my meds and other day activity. The time line does kind of control what we can do in the mornings and evenings though as most of the invitations we get to go to eat out starts at 6 or 7PM. We always must decline the invitations. It also makes traveling anywhere kind of limited also.

A PR rep for Esbriet called me Monday to find out how my insurance denial appeal was gong and I had to tell them that I had no idea as my doctor was handling it and they hadn’t let me know anything lately. They said they would contact my doctor to see if they could get any information from them. It appears that there are 3 or 4 different interested Esbriet foundations trying to either get me on Esbriet or better financing to obtain it for me. I’m not sure what is going on with any of them. I have called the Pulmonologist’s nurse this morning to see if I could find out anything. As usual, it all went to phone mail and I am awaiting to see if I get a phone call from her sometime today. Otherwise, I’m still in the dark about it.

I do hope you can get over all the problems you are having with the insurance and the physical damage the Taxi accident cause you. I’m sure it has cause mental strain also. Maybe they will come up with some settlement that will help you, as you say, “Maybe in December”. I know it can’t cover everything the recovery has caused but maybe it might help a little?

I’d better close my rambles again. It always seems to cover things about me not related to the IPF, but it gets them off my mind a little which might be a little therapy for me. Not much help for the IPF people that are looking for help for them though.

Love to hear from you as always. Take good care of yourself.
Ray

[Charlene]

Hi Ray,

There are two Ray’s now contributing to this thread, so I’ll need to make sure I get both of you correct 🙂

I was able to get to the beach at my cottage this weekend, and it was lovely! I even swam a little bit with my oxygen tank on the beach and a long cannula. I just had people “spotting” me to make sure my cannula didn’t trip someone else, or get in their way.

Glad to hear your weekend was alright, sometimes those quieter weekends at home at just what we need, at least this is the case for me anyways. I enjoy cooking too, but much prefer to cook something for others to eat as I don’t have a big appetite either and yes, cooking certainly takes a lot out of me because I’m standing for a long time. I can’t eat as much anymore, or as fast as I run out of breath chewing and feel a lot more full than I ever used to before. Thanks for asking, and I hope your wife is able to benefit from your recipe collecting 🙂

Please be really careful with the smoke this weekend and going to the anniversary party! That would make me nervous, and combined with the heat it is almost a recipe for the ‘perfect storm’.  I hope you don’t have to miss it altogether, I know that can suck too, but that it is safe for you to attend and enjoyable of course. I don’t have many plans this weekend, as I actually opted out of going away with friends this weekend to prioritize my health and safety as well.

The sleep issue has thankfully subsided, and I think part of that is because I’ve tired myself out enough during the day that the physical fatigue exceeds the mental stimulation that is keeping me awake from thinking too much. I hope it evens out soon, as you say. Keeping a regular bedtime is such a good idea — I should do better at this as I know it is physically better for my body too. Thanks for sharing!

How frustrating for you – the conversation about Esbriet! Hopefully they are able to get somewhere with it and give you some good news soon. Do let us know when you hear something, hopefully positive news 🙂

Thanks also for your kind words re: the accident settlement. It certainly is mentally exhausting! Money won’t fix what happened, thats for sure but it will definitely help as I have so much school debt right now and being able to eliminate that would allow me to save so much more, and maybe even drop down to part-time work as working full-time is getting so hard for me with my lung function. However, I need to work because of the financial situation… its a bit of a mess, and any type of settlement will definitely help.

Glad you find this forum helpful and can get some things off your chest, that is important too. It’s always great to hear from you, thanks for writing and I hope you’re having a nice week.

Cheers,
Charlene.

[Raymond C. King]

Ray Hastings,

Thank you for your Esbriet advice information.
“(1) Never Take the pills on an empty stomach.”
I won’t have to worry about that as I have a frozen stomach and must take all my food and drugs via a feeding tube that goes directly into my intestines. No one from Esbriet or anyone else can tell me if I can even take the medication ground up or extracted from the capsule directly. They just tell me that they have never come across that problem, so they don’t know. My pulmonologist doesn’t know either. So, if I get the medication, we will probably just have to experiment, I guess.
“(2). It is ok to miss a dose occasionally without starting over”.
That information is very helpful. I am supposed to meet with a representative Thursday from Genentech, the manufacturers of Esbriet to provide information about taking the drug. I hope he can answer some of my questions.

If things keep failing by not getting an OK from my BC/BS Insurance Company, I will take your advice and contact the Stake Insurance Commission. My Pulmonologist has really been working hard in obtaining it for me and other assistance foundations have been contacting me. I do have VA Insurance but have never gone to them since I had the Federal BC/BS insurance. I also have Medicare, but it doesn’t cover drugs.

I hope the Esbriet works for you and extends you life with the PF. I guess we will never know for sure how much longer we would have lived if we hadn’t taken it. How do you gauge something like that?

Thanks again for your information. It is really appreciated.

Ray King

[Charlene]

Hi Ray,

Goodluck with your meeting on Thursday with the representative from Genentech, I do hope that goes well for you! If you find out any ‘gems’ from that meeting, in terms of information that might be helpful to other members of the forums (even future members) please let us know.

Hope you remain well, and thanks as always for being part of our forums.
Warm regards,
Charlene.

[Michael Lamkin]

Hi Ray, I use the VA and it’s never too late to get started. For the most part their care is excellent and the highest co-pay they charge for medications is $34 a month but for the most part is $8-$11 a month per prescription. There are zero co-pays on ALL other treatments such as CT’s and X-rays. Also no charges for oxygen (even the concentrater). If expense is a concern I would urge you to consider taking advantage of the benefits you have EARNED!

wishing you the best!

Michael

[Charlene]

Such valuable information you’ve shared for others Michael, thank you!
Charlene.

[Donna]

If you have never gone to the VA for health issues how would you get started if you needed to? My Husband has very good Private Insurance but, of course there is a deductible and coinsurance amounts til you meet your max. My prescription Specialty insurance is helping out with Perfenidone (Esbriet) to a small degree which will help til I get to my deductible. Just found out Pulmonary Rehab is $460 a session. They want me twice a week crazy expensive.
I just fractured my hip Christmas weekend so can only do upper body for 3-4 weeks til hip is better.
As far as Medicine on second week with a few side effects GERD which take meds for, itching, nausea, trouble with eating x3 a day. Diagnosed 5 years ago Early Stage PF. Changed Dr.’s this year and now being put on meds and medically treated for Fibrosis at University Hospital in Dallas.

[Christie Patient]

Hi Donna, I found this webpage with a lot of information on how to start using your VA healthcare. There is a link at the top that is meant to help you determine your eligibility, and several ways to apply once you know. Should be pretty easy if you have all your information handy. Best of luck.

[Joyce Douglas]

Hello Charlene.  In response to your questions on today’s posting,  I was diagnosed on one day and immediately my Dr.

who is in charge of my IPF, told me he was putting me on the Esbriet.  He also said that I had severe IPF and wouldn’t be able to have a lung transplant.  I received my first box of Esbriet about a month later, and 16 months later am still taking it daily.  I do not have too many disagreeable side effects from the Esbriet that I am aware of, but do have some stomach issues of nausea at times if my doses are too close together.  For ex: bkft at 8:30am,   lunch at 12:00 pm and supper at 5:30 to 6:00 pm. If they get any closer together then I will sometimes have nausea for a while and need to have a small bit of food ex: a slice of bread, graham cracker or fruit.  A drink will cause the nausea to be worse, so I drink water and tea with  my meals but not often in the afternoon, until my supper when I then have my tea with supper.

 

[Charlene]

Hi Joyce,

Great to hear from you, as always – thank you for your reply! 🙂

It is nice to hear of a quick-acting doctor for a patient with IPF, as I know other members of our forums have struggled with being put on the anti-fibrotic medications that will slow down the progression of their disease. It sounds like it has been tolerable for you over these 16 months, which is good to hear. Have you had any comparison PFTs/scans that show if it is working in slowing down the progression of your disease? Have they ever re-evaluated your transplant candidacy?

I’ve heard quite a few people have to structure their meal times around when they take their medications and glad you’ve figured out a schedule that works for you. Interesting that the drinking makes the nausea worse for you, that is a bummer. Tea at meal times would be okay with me though, I love tea, so I’m glad that is an option.

I hope you’re keeping well and thanks, as always, for providing us with an update.
Cheers,
Charlene.

[Raymond C. King]

Hi Michael,

Thank you very much for the VA Medical payment information. I looked up the VA Medical Insurance program on the internet to compare some of the coverage payments and I have basically determined that even though I must pay for my Supplemental (FEP BC/BS, FEDERAL Employee Program Blue Cross & Blue Shield health insurance, I think in the long run a change would not benefit me. I do now have the benefit of being able to change my insurance provider selection every November-December of each year if I see the other insurance company provides better or needed coverage.

Also, with the drug purchases: I have looked at the VA drug benefits pay table and they are about the same minimum I pay for each RX. The FEPBC/BS drug coverage also has a mail order program where I can order a 90-day supply of generic drugs for just $10. The copay for a 30-day or less RX at a drug store has almost always been less than $10. Sometimes what I pay for a 30-day supply of drugs will total less than $10 if I just continue to refill it at the drug store each month and not have it sent by mail order. For Specialty Drugs like Esbriet, FEPBC/BS will cost me $35 or about what you quoted me for the VA.

I am not sure if you have any family coverage with your VA insurance. I read the following statement while reading what VA insurance covers and it stated: “VA does not normally provide care for family members of Veterans enrolled in VA’s health care program. If you drop your private health insurance, they may have no health care coverage”.

Even though my children are now grown and away from home, I have family coverage for me and my wife and paying a lowered annual rate for just the 2 of us. If I should die, she can continue the plan for life.

Anyway, thank you for your helpful suggestions. As always, they are appreciated.

Good luck with your life.
Ray King

[Raymond C. King]

Hi Charlene,

Yes, there are now two Rays commenting on this topic, so I will add my last name to my posts.

I am sorry I have not commented on your post to me on Monday PM, but I was kind of waiting to see if my Pulmonologist’s nurse got back to me letting me know what was happing with my medical insurance and the Esbriet denial.
The nurse did call me Tuesday and tell me that a representative from Esbriet manufacturer Genetec had come to her office and went over my HDCT pictures, X-rays, and tests and helped her fill out the denial appeal. After they completed the appeal the
rep said he would follow it through to make sure my insurance company received it. The nurse had told Genetec that they had sent two denial appeals to my insurance company and each time they said they had not received them and were still awaiting the denial appeal letter. I still haven’t heard anything about the results. I guess the appeal was sent by snail mail so and it will be awhile

On Wednesday I did get a call from Genetec telling me that they were sending me the 30-day free trial via registered carrier and it would arrive today, Friday.

Yesterday, Thursday, my wife and I met with the Genetec representative and he spent an hour going over the history and use of Esbriet. He had traveled from Salt Lake City, UT, 250 miles away for our meeting. He said he would be meeting with us once a month with more information and any questions on its use. I hate to say it, but we felt it was a wasted hour as I had viewed all that information and charts on the internet and other Internet sources including this and other forums. He said he was a Pharmacist for 25 years and had lots of nurse’s experience. He really tried to be helpful with our few questions but the main question I had, he could not answer. I wanted to know if I could insert the medicine through my feeding tube as I have the frozen stomach. He said that the pills now come in solid pill form and not powder in a capsule. He said that the pills had to be taken with food and were not crushable as the pill ingredients were meant for slow release. He told me rather than starting to take them after the sample pills arrive, I should wait until he can find out how or if I could utilize them from Genetec. He said my doctors nurse would notified me. I don’t know who at Genetec can help him as my doctor and I had both called Genetec via phone and after talking to the drug department there, we were told the same thing, “They have to be taken with food and they are not crushable and that is all they know about it”. I guess someday, we will find out what to do?

I was very happy you were able to go to your cottage and swim at the beach over last weekend. I’m glad you were able to use your long cannula, so you could swim, and no one had tripped over it. I think it would be nice if the companies that make the cannulas tubing would make it with bright stripes on it, so people could see it. Just a thought. Luckily, I am not on oxygen yet, so I don’t have to put up with it. I guess it will eventually progress to that point though. It’s too bad that you had to be on it so soon being as young as you are. The Genetec Rep said that IPF is predominate with people that are over 65 and male. He said it was seldom that younger people get it.

My wife’s sister and husband are coming from Houston, TX this weekend so I guess we will be doing things with them. There is supposed to be a big celebration with her husband’s family and friends Saturday that we have been invited to attend but it is going to be so hot. I am not looking forward to it. Today, it is predicted to be 104 degrees F. and about the same tomorrow. It probably won’t seem that hot to my wife’s sister because the humidity level is very low here compared to Houston and their temp has been in the high 90s and low 100s the last few weeks. She will probably want to wear a sweater.

Yes, I hate to give up cooking as I really like to try out different things and I plan to destroy all the recipes and cookbooks I have collected. My wife has never liked to cook, and I usually have cooked all the big meals, so she won’t need the recipes. You said you couldn’t eat very much either and like you, I always chew my food for a long time. I always want it to be chewed to real small pieces, so it won’t stay in my stomach too long and cause me to get nauseated.

I guess those student loans are a real headache. I was able to pay any student loans I had fast and the Federal Aviation Administration paid for a lot of my extended schooling and other training. I guess I was lucky? I’m sorry you must work such long hours because of your financial situation. It doesn’t help to have to do it when you are not feeling well and having to put up with the other problems IPF causes. I do hope the accident settlement will help a little when you get it, and you can slack off a little with the extra work. I do hope they settle it in December like you said they might.

I love your comments and information. I’ll close for now and let you know if I hear anything about the Esbriet. Take real good care of yourself and I hope your weekend will provide something good and relaxing for you.

Ray King

[Charlene]

Hi Ray,

Nice to hear from you, and I hope you’re having a nice weekend! I am currently up at the cottage, so I apologize in advance for the brevity of this message… I always try to keep my ‘online’ time short while I am up here. It is so peaceful that way, to be away from electronics.

Glad to hear the Esbriet rep was helpful in submitting an appeal for the insurance denial. Fingers crossed that they can help, especially after looking at your imaging and maybe making a stronger case for you. So frustrating that insurance companies can claim they don’t get appeals. Although I suspect this is true in some cases, my guess is that this is just another delaying/stall tactic on the part of insurance companies unfortunately. Fingers crossed that things work out for you, and that they can get the Esbriet approved. Did they say how long you should have to wait until you know something?

Did the trial Esbriet pack arrive for you? Have you been given any further instruction on how you can consume it given the frozen stomach? Hopefully someone knows something about this. How frustrating! Are you planning on waiting to start it then until you have an answer? Sorry to hear that the hour long conversation was a waste of time for you and your wife.

Gosh I hope you’re keeping safe in that hot weather, I can’t imagine temperatures like that! It is nice here today, a cooler breeze and the temps feeling about 10 degrees cooler than last weekend which was about 40 degrees celsius. I’ll take the 30 degree temps after that 🙂

The Esbriet rep was right in terms of how infrequent it is that younger people get iPF, although I know about 8 people now who have it and are under 40, so I guess we’ve all ‘drawn the short straws’ unfortunately…

Thanks for your kind words re: the student loans and settlement… I sure hope it ends in December as well and alleviates some of the financial stress for me too. You are lucky that the FAA paid for your extended student loans, that must have relieved a lot of stress for you. It is tough, especially when I’m not feeling super well. It could be worse though, and I try to keep everything in perspective.

Take good care, and I do hope that you’re able to write soon with good news of the Esbriet. Fingers crossed for you!

Cheers,
Charlene.