Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports

[jay-turbes-s]

Six months or more after FDA approval before Esbriet was prescribed by Kaiser/CO.

[Charlene Marshall]

Isn’t that sad Jay? I know some patients still struggle with getting this drug prescribed (per the flash briefing) despite it being FDA approved for years now. The number of upto 40% was staggering though. Hopefully this changes!
Thanks for writing.
Charlene.

[ajd]

I heard the drug was marginally effective.  i better do my research again.

Tony

[Charlene Marshall]

Hi Anthony,

Let us know if we can help by sharing patient experiences! I know the GI side effects from the anti-fibrotic medications can be rough but many of us swear the drug helps to stabilize the disease progression. Others don’t think it does, and say the side effects aren’t worth it if their quality of life is compromised. It really seems to be different for each person. Let us know if you have any questions we can help with!
Charlene.

[lee-ann-robertson]

My doctor prescribed OFEV the day of my diagnosis. It took a few weeks for me to actually get started on it.

[marshaharris]

I was diagnosed with IPF in 2015 and the only comment my pulmonologist made when I asked about Esbriet and Ofev was, “Oh no, they have terrible side effects.  You don’t want to get involved with them.”  Now in 2020, I see a new Pulmonologist, and he has not mentioned these drugs either…  Is it possible that since I have severe scarring, I am no longer a candidate to reap any benefit from taking them?  One thing is for sure:  On my next appointment with my Pulmonologist, I am going to bring up why I have not been put on either drug over the FIVE YEARS since my diagnosis and press the subject if need be to get answers.  I expect to be informed about whether these drugs might help me and ANY CLINICALLY PROVEN REASONS why at my current stage of IPF they will not help slow down progression of my disease.

I feel robbed of the opportunity to use these drugs so far!  (And by the way, I no longer will allow any Doctor to make my decisions for me before he fully discusses what I need to know and answer all my questions so that I CAN MAKE MEDICAL DECISIONS FOR MYSELF!

Marsha Harris in Pittsburgh, PA

[elle2021]

Hello to all of you Pf/IPF individuals out there. My pulmonary doc  mentioned & prescribed OFEV for me in November after lung biopsy in October. I was mentally prepared for whatever side effects came. I will say, I could have dealt with the diarrhea, & a little nausea. However, I was not prepared for the see-saw effect of BP & sugar. I had severe nausea & no diarrhea. Was constipated  & dehydrated. I  am going to down play how sick I really was on OFEV. I will tell you that please keep an eye on your liver function test. If you can not eat or drink anything please tell your doc. I am an IPF patient and my opinion only matters to me. Quality of life for me is better than quantity. My doc stands by my decision NOT to take the medicine. He will follow me. And when I or the good Lord say: ok, let’s try this again. Maybe they will have come out w/a new medicine. I eat better, sleep and am able to enjoy my great grandchildren now. My life is full & like always I trust that God will help me with everything.

[jillt]

I still can’t find any information that indicates the drugs actually do anything to extend life span. They also seem to do nothing to change people’s quality of life. I’ve never been convinced of the need for me to take them, especially if taking additional medications to control the awful side effects would also be likely. I’ve suffered with gastrointestinal symptoms for many years without resolution, so adding something else to the mix felt too daunting, especially without tangible quality of life gains.

My experience has been feeling like I’ve been hounded to try and force me into taking one or the other of them since they were approved for use. It’s been a frustrating experience on both sides, to the point where I discharged myself from the government hospital service I was attending in favour of a private pulmonologist who would actually listen to my wishes as the patient instead of covering the same ground at every visit about why I wouldn’t take them. So, I guess it must vary between countries and probably even doctors. In general, I’ve found you really need to be your own reseearcher and advocate when it comes to all things health. So much medicine these days seems to be of the “tick box” style.

[elle2021]

Jill, do your research. Doctors nowadays want to put us in one category or another. 30 y of nursing never prepared me for this event in my life. My Gene’s from my mother (Scleroderma) is an autoimmune disease. These diseases play havoc with all of your internal organs. ie. heart, pancreas, lungs & now 2nd to OFEV my kidneys, I ended up in a renal crisis. If anyone takes the 2 drugs please have them to do regular liver function test. If by chance your LFT’s are good you will be fine.  If they are bad, talk to doc & get him to lower the dose 1 a day then after a couple of months get another LFT if good & you feel decent continue. For the rest of pharmaceutical companies you don’t want to know what I think. Have a blessed day & hope you find the answers to your questions.

[Charlene Marshall]

Hi Lee Ann,

I am glad to hear your doctor was proactive in prescribing you Ofev, that is a step in the right direction! How have you tolerated it so far? I hope you’ve managed with it okay, I know a lot of people (myself included) have a tough time with it at first.

Charlene.

[Charlene Marshall]

@marshaharris

Hello my friend!

So nice to hear from you, thanks for writing to us about this topic. That said, I’m really sorry to hear of your experience with that first Pulmonologist when you asked about Ofev and Esbriet…. my jaw dropped! I hope physicians read this article, and start focusing more on prescribing these anti-fibrotics because not everyone has adverse reactions or terrible side effects. Even if you do, there are ways to work around it. Arg, so sorry Marsha. Proud of you for demanding answers at your next appointment, we are our best advocates. Do you mind circling back and letting me know how that goes? I really want to start understanding this phenomenon better — the reasons for physicians not prescribing the anti-fibrotics. Hopefully your next experience regarding these conversations is positive. Thanks again for writing.

Sincerely,
Charlene.

[marshaharris]

@charlene-marshall

Good morning, Charlene!  Mixed responses to this issue, for sure!  Next Friday my goal is to get some answers about these two meds from my Pulmonologist, someone I respect and trust.  I am happy to get back to you with what I learn!

I’ve been scarce on this site and miss the “closeness” of my prior involvement with you and my IPF brothers and sisters.  Time to read more, share more and feel the love!

I hope you’re on the upside of the health challenges you were dealt late last year.  My admiration of your courage and perseverance endures!  And as always, I send you hugs and blessings, my dear.

Marsha

 

 

[Charlene Marshall]

Thanks so much for sharing your thoughts and experiences with this Jill. Sounds like there are frustrations for patients on both ends of this – some docs pushing for it when patients are uncertain, and some physicians not prescribing when patients are wanting the anti-fibrotics. So tough! I appreciate you taking the time to write us about your experience.
Charlene.

[Charlene Marshall]

Hi Marsha,

So nice to hear from you as always! Sorry for my delay in responding – I just returned home from a trip to California, it was wonderful to feel the warmth of the sun again. Not too worry about being away from the forums for awhile, you’re never far from my mind and I know you’ll check in when you can. It is always amazing to hear from you though.

Goodluck at your appointments this Friday with the Pulmonologist – I hope you get some answers. I’ll be thinking of you! Much love.
Charlene.

[dennis-broetzman]

I am 70 years old and literally climbed mountains for hunting up until a year ago and this last spring became short of breath.I was diagnosed with IPF in July of this year but in looking back to 2018 at my ct scans it had already started but but was missed by my primary doctor. My pulmonologist made me aware of Esbriet and Ofev on the day of my diagnoses. After him explaining the possible side effects of both I decided on Ofev.  It took a little while to get my insurance to approve it. ( a week seemed like a month because I felt every day counted) I have been on 150 mg twice a day of Ofev for only a week now but no side effects at all. I seem to be able to breath a little deeper now without coughing. My copay is about $2700 per month but it sounds like someone through CVS may cover the copay in the future. Thanks everyone for all your information.

[dennis-broetzman]

Hi Charlene, its now been 6 months on Ofev for me. I have had three pulmonary function tests since July. My second one in October showed that I lost 8 % . It scared the heck out of me. The results from the last one in January of this year showed my breathing was back up to the original test in July. I realize the tests can very because of the person doing the test and how hard the patient tries but I believe that I have leveled out {at least temporarily} because a rigorous exercising program I am on and for sure the Ofev. Boehringer Patient Assistance Program sometimes helps with the copay with some patients. I hope your doing well.

[Charlene Marshall]

Hi @dennis,

Thanks for sharing your PFT experience with us, and I also hope you’re doing well. Yes, I agree: PFTs can vary depending on a variety of factors, including whether or not you’re battling any type of virus, exacerbation etc. I’ve had tests that were a lot lower and unbeknownst to me I had a minor virus or something that influenced the result. Glad Ofev seems to be helping you, and that the BI patient assistance program exists! Take good care,
Char.

[christie]

Indeed! Lots of factors can affect your PFT scores. It can be a good test to indicate a hidden infection in the body, illness, or other imbalance with medications, diet, etc. Even your weight can affect your PFT results. A young CF patient friend of mine (post-transplant) had a drop in PFTs, freaked out for a while trying to discover the cause… then he lost ten pounds, and returned to his highest scores. Nothing else changed, but the small amount of extra weight put stress on his lungs. The same exact thing happened with my mom. She’s lost about ten pounds since her fundoplication surgery and her latest PFT was the highest it’s been in about a year.

[patrick-coghlan]

Things like exacerbations can certainly drop your numbers.  I didn’t even know the term exacerbation last Fall when my lungs became congested for about 2 months.  I just happened to have a PFT scheduled near the start of that episode and I’m sure my numbers were awful (pulmonologist wouldn’t even give them to me and said he was going to discount the result from that test, as my subsequent test was much better…although still lower than 2019).

[jross]

Hi Charlene,

My pulmonologist gave me brochures for both drugs at our first (out of hospital) meeting  (3/20?). I didn’t start either therapy until this January OFEV), due to a combination of factors: starting a clinical trial that precluded other therapies, minimal progression, cost and side effect concerns. My third month’s supply of OFEV is on its way, thus far with no side effects. It looks like the breathtaking cost will be minimized this year by a combination of Medicare and foundation support.

John

[Charlene Marshall]

Hi John,

Thanks for sharing your experience with us, and I’m really glad to hear the side effects of Ofev have been manageable for you and that the financial implications of that medication will be covered a bit this year. It is very expensive!
Take care,
Char.

[richard-shelton]

I began taking Ofev immediately after I was diagnosed, and stayed on it for almost 3 years.  I had G I issues starting about 6 months after I began taking it.  They progressed until I virtually lost my ability to tolerate it and became malnourished.  I am now on Esbriet with no visible side effects, however I have now been diagnosed with stage 3 chronic kidney disease.  I have no idea if either drip would be the cause of that.  I do have high blood pressure and believe that may be a factor.  I believe studies have proven both drugs are effective in slowing the progression.

[linda-maguire]

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day work-up & presented my case at Grand Rounds.  The outcome was a recommendation to hold off on any anti-fibrotic medication, because they thought I had an unusual presentation & no risk factors, also normal PFT scores.  They suggested that I have a PFT & 6 min. walk test every 4-6 months and consider medication only if my numbers started to decline.  Shortly after I was diagnosed with IPF, I was also diagnosed with “silent” GERD, which NJH & my pulmonologist think might have caused the fibrosis.  I’m happy to report that my numbers have been stable over the past 6 years, & I am not on any anti-fibrotic medication and just take Prilosec for the GERD.

[linda-maguire]

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day work-up & presented my case at Grand Rounds.  The outcome was a recommendation to hold off on any anti-fibrotic medication, because they thought I had an unusual presentation & no risk factors, also normal PFT scores.  They suggested that I have a PFT & 6 min. walk test every 4-6 months and consider medication only if my numbers started to decline.  Shortly after I was diagnosed with IPF, I was also diagnosed with “silent” GERD, which NJH & my pulmonologist think might have caused the fibrosis.  I’m happy to report that my numbers have been stable over the past 6 years, & I am not on any anti-fibrotic medication and just take Prilosec for the GERD.

[Charlene Marshall]

@lmaguire

Hi Linda,

Your experience is so refreshing to hear! First, that your doctor ordered an HRCT scan and second that she recommended Ofev and Esbriet early if the results indicated a need – that’s a proactive physician! Good for you for seeking out a second opinion, which sounds like it was thorough as well. I’m glad to hear the GERD medication is helping you and that your numbers are stable, that is wonderful news!
Char.

 

[kris-manian]

Thanks for sharing great information.
I have a basic question probably for a Pulmonologist but I will ask any way as some of you may know already.
what causes shortness of breath? Is it scaring/fibrosis of the lungs or inflammation of the lungs. If it is former then the anti-fibrotic drugs should help. Right?

thanks

Kris

[christie]

Hi Kris, I’m not sure exactly what causes it, but the short answer is “yes”. Both scarring/fibrosis and inflammation can cause SOB. Unfortunately, anti-fibrotics do not undo the damage that has already been done. They can’t un-scar the lungs, but rather are to prevent/slow further scarring. Anti-inflammatories and corticosteroids reduce inflammation and may have a more tangible effect on the feeling of SOB.

[judith-parker]

I am 79 years old and was diagnosed with IPF in September of 2015.  My pulmonologist immediately recommended Esbriet, remarking that Ofev seemed to have more side effects.

I live in the US, but I have been ordering pirfenidone (the generic version) from Canada.  I have to pay out of pocket, but it is less than buying here even with insurance.

Six and a half years later I still am not on O2 24/7, and I am convinced that is thanks to the Esbriet.  My lung function is declining, but slowly.

With my pulmonologist’s permission, I have discontinued the Esbriet for sunny vacations, use Imodium when needed (rarely), take short breaks when needed, and take only a partial dose in the am.

I am disappointed that there are physicians who do not at least offer these medications to their patients, especially since the studies show that they can extend the lives of victims of this cruel disease.

 

 

 

[jerry-genesio]

I was diagnosed with IPF two years ago (Jan 2020) and was informed about both Esbriet and Ofev during my first visit with a pulmonologist. I was told Ofev was not an option because I’m on a blood thinner (Xarelto) but Esbriet was recommended. I was given literature and after reading about the side effects I informed my pulmonologist on my next visit that I would not take it due not only to the many possible side effects but also because I fear incompatibility with one or more of the eleven other prescribed drugs I take daily. Presently, I’m experiencing no unpleasant side effects or incompatibilities and at age 83 I’d rather maintain a positive and rich quality of life.

[christie]

Wow Denise, I can hardly believe that two pulmonologists would not even acknowledge the existence of anti-fibrotics! Is your diagnosis for sure PF/IPF? If there is some wiggle room with that (hypersensitivity pneumonitis, NSIP, etc.) perhaps there could be some reason to not discuss anti-fibrotics or prescribe them. Seems like doctors should know best but sometimes they miss the mark. I hope your next pulmonologist is will to discuss it with you and give you some answers.

[denise-stogdill]

That’s what I’m hoping for!  And yes, my diagnosis is pf.

[Dennis Skahen]

I have IPF being subscribed in Sept 21 and on 100 mg of OFEV since Oct 2021.  Mild GI problem, otherwise hoping for good results.