December 22, 2021 at 9:44 am #30640
Hello Forum members,
I have been on OFEV Nintedanib for six years and eignt months. I was quite quickly reduced to the 100mg capsules due to the usual bowel problems. Over the years my weight has declined, from my healthy 161 / 166 lb bracket to a low of 136 lbs. I had stabalised for a long spell at 148 lb, until last February when following an exacerbation I lost (in the sense of where did that go?) 10 lbs with a further few lbs of loss.
Eating badly …lots of sweet stuff, I have regained half a stone to 144 lb and stuck at that.
The question that I would like answering refers to the fact that the medics propose a change of medication, from OFEV to Perfenidone (Esbriete).
Having read the prospective side effects, I do not fancy the change. The idea that I would need sun screen as a very pale skinned Celt (with a bit of red in my hair) who burns very easily, and the reference to nausea rather bothers me. The nursing staff, (as I was), are concerned about my weight.
I have learned to live with OFEV, but particularly would NOT relish the idea of nausea.
Have any of the members any advice for me? What has been your experience? Has anyone changed between the two, how did it go?
As a P.S. I share with you the loss of a friend, Godfrey. We were both diagnosed back in 2013. When he had survived about 4/5 years he was prescribed OFEV. When we discovered our common affliction, I would visit when passing their remote small holding, sharing our experiences. He was prescribed Oxygen (as I) and we shared our feelings on that. In the last 3 months he suddenly lost weight including muscle bulk going under 120lbs and lower. He was 85, his wife is my age (almost 80) and from our local community, our children all of an age all attended the same primary school. Perhaps because of our shared experience, I do feel the loss very keenly.
Thank you for reading this letter.
May the New Year bring us joy in the manner appropriate to each.
Kind regards, Joe
December 23, 2021 at 3:03 pm #30647DaveParticipant
Hi Joe! Thanks for sharing your journey and so sorry for your loss of your good friend.
I can’t speak to OFEV, but I have been on Esbriet for 1 year and 9 months and have never had any side effects. I always eat something before taking it (if only a graham cracker or something light), and to date have never had nausea. I wear light weight long sleeve pullover shirts and a hat and to date have not had any sun problems.
Everyone is different but wanted you to hear from someone who has not had the side effects that others may have struggled with.
Kindest Regards, Dave
December 28, 2021 at 8:26 pm #30670DennyParticipant
Hi Joe, I have posted several times that I tried WEI Labs (Chinese herbs) and it seemed to have stopped my progression back in 2017. I was regressing and noticed while playing hockey, got diagnosed then did some research and found WEI Labs. They stopped my progression after 30 days and my next 8 PFTs have been stable or better than my original test. I did take them for 90 days and a 2 week profilactic dose once a year. Several others on this site have had different degrees of success. One went off oxygen. They are expensive.
January 12, 2022 at 8:44 am #30730michael lewis mcdowellParticipant
I was on Esbriet for two years (3 tablets a day) and had very few problems. The only problem I had was skin trouble. Dry bumpy skin on my face and head (pre-cancer, so my Dermatologist said). I have had no gastrointestinal side effects. I can eat anything I want. I have just been changed to OFEV. The reason the Doctor changed me was because of my reaction to the sun. I am on oxygen 24/7. I was diagnosed in 2020. I haven’t had any problems with OFEV as of yet. I can eat anything I want.
December 23, 2021 at 3:14 pm #30650mike frymanParticipant
I have been on ofev for about a year and a half and think i am doing OK. PFT’s seem to remain the same, which is a good thing, as they say the ofev is stopping the progression, at least i hope so.
I am thinking of selling house 7500ft altitude and moving to 4500ft, has anyone done this. Is a change in altitude a significan thing for IPF’ers. I do love where i live. Collorado springs, high north side. Mike
December 27, 2021 at 10:37 am #30656Bernard McKennaParticipant
I am 61 yearts old and live in the UK but am Irish and like you we have very fair skin. I have never had a sun tan and just go red.
I am moving in the New Year from Ninedanib (Ofev) to Pirfenidone (Esbriet) and I am aware of the side effects but I have to change as my lung function has declined and Ninedanib no longer works for me. There is a clinical trial in the UK and probably also in the USA of a nebulised form of Pirenidone which does not have the same side effects as it goes stright to the lungs but I have been refused acceptance on the trial as there is no proof that I not not be able to cope with Pirfenidone in capsule form. There is no placebo in the trial. To me a nebulised form is better as none of the medication is wasted by going to other parts of the body it is not meant for including the skin.
I have been told I will have to take Lansoprazole whilst on Pirfenidone to stop getting sick (what you call nausea) but I already take a 30mg Lansoprazole each day for the same reason whilst on Ninedanib. I will have to wear a a high factor 50 sunscreen but it seems the main areas to cover up are my neck and the backs of my hands. They have also told me not to take grapefruit or grapefruit juice and to avoid well done red meat. Neither of which are any problem.
With very best wishes Bernard
December 28, 2021 at 4:17 pm #30667
Excellent news that there is now a nebulised formulation for Ofev. It’s about time. The gastrointestinal side effects of these drugs are dreadful, necessitating an alternate route of administration. The companies should investigate intradermal or intramuscular as well as the nebulised form. Any route of delivering the drug is better than the GI route. The loss of weight, loss of appetite, nausea & diarrhea significantly decrease the quality of life. Let’s hope that medication that actually reverses fibrosis will become available. We need a cure!
January 14, 2022 at 12:54 pm #30750
January 14, 2022 at 3:23 pm #30754
Kathy, I was in error of posting that there is a nebulized form of Ofev. I do not believe there is one. A participant on this forum posted that there is an ongoing clinical trial, in the UK I believe, with Esbriet. I called Genentech USA, the manufacturer of Esbriet, to ask if there were clinical trials in the US and they said there were none. That news was disappointing. In addition, many clinical trials with antifibrotics enroll IPF patients only. My husband has Pleuroparenchymal fibroelastosis (PPFE) and very few studies are being performed with this type of PF. Hopefully, alternate dosage routes for antifibrotics will be investigated in the near future to eliminate the serious GI side effects of oral administration.
December 28, 2021 at 9:59 am #30657Brian DavyParticipant
I was on Ofev 150 mg for 2 years then changed to 100mg but still had bad stomach problems ,although after 3years it showed the progression had slowed down which I was happy with but after another year it had progressed so this year in October they changed me over to Perfenidone and so far my stomach has been back to normal,i still have a bad cough
I am a golfer so the sun could be a problem ,had no nausea so far so time will tells am also on oxygen
December 28, 2021 at 1:33 pm #30659Malcolm MannParticipant
I was on Ofev and couldn’t tolerate it, they switched me to Esbriet 2 years ago. I live in Australia a (Scottish, Italian heritage) and I was fearful of the sun issues but in my case that has not been an issue. Initially I was smothered in sun block and bought long sleeved shirts etc, but the over sensitivity to the sun did not occur.
I’m a little more careful but I find I dont need sun block.
My weight continues to drop though, at a glacial pace, around .5 to 1 kg per year, many foods I once relished I can no longer tolerate, but I have no nausea issues. Overall I’m very happy being on Esbriet
December 28, 2021 at 3:14 pm #30661
Hello Jofac, from Cape Fear USA. I am 69 and awaiting double lung transplants.
Keeping in mind that every one is different, disclaimer made, here’s my experience with both OFEV and Esbreit.
After 30 months on OFEV I had to quit it. The gastric distress was just too too terrible. Lost a lot of weight, 30+ pounds and my appetite. When I again reported this to my Pulomonolgist and said I was quitting OFEV, he urged me to at least try Esbreit and see what happened.
I am soooo glad I did! The constant diarrhea disappeared after a couple of weeks and my appitite came back.
I am also a life-long beach bum, and love baking on a quiet beach for hours. I had zero sun exposure issues on Esbreit. I’m of Irish and Canadian descent, so not dark skinned.
Also, I have read, that IPF patients that change from one to the other medications, have sometimes shown more resilience to the disease’s slow march to death. I believe that it was on this site I read that.
So my 2¢ is if you can, try it and see how you do.
Best of luck to you, update us if you can with your decisions.
December 28, 2021 at 3:27 pm #30662Lou Body IVParticipant
I have been on Esbriet for 2 1/2 years. All the side effects were pointed out to me beforehand. I trembled taking my first pill but nothing bad happened. In my 1st summer on Esbriet I did develop a rash. But some Aveeno cream worked wonders and I got over it. My 2nd summer I never developed the rash so I am out in the sun a lot now. I continue to take 7 267 mg pills per day every day. The only issue I can think of is waking up at 4 or 5 am with insomnia when I wanted to awaken around 6:30. I can deal with that. I hear many war stories about OFEV but not many about Esbriet. Try it. I think you’ll be fine. I’m 82, by the way.
December 28, 2021 at 5:42 pm #30668
Hello to all you kind folks in this IPF community.
I thought that I had ticked the ‘Notify Me’ box, but seemingly not. If I had done so I would have replied to each of you as the emails were received.
I am putting this quick response on, to say a grateful ‘Thank you’ to all your very helpful replies showing the positve side of Esbriet. I think that I will take your corporate advice and accept the medics proposal for the change.
I will be having a blood test on Thursday for liver function values, this will be for a follow up consultation in the first week of the new year when a decision needs to be made. Your answers are most timely.
Thank you, thank you, thank you,
Will reply soon, Joe
December 30, 2021 at 2:00 pm #30671Bernard McKennaParticipant
The current trial is for a nebulised form of Pirfenidone (Esbriet) not Ofev (Ninedanib). They cannot turn Ninedanib into a nebulised form but have done so with Prifenidone though it is still in the trial stage but I understand looking good.
Best wishes to you Phyllis, Joe and everyone and a Very Happy New Year to all.
December 30, 2021 at 6:52 pm #30672
Thank you Bernard for the correction! Nebulised Esbriet should alleviate the nausea & GI side effects. Hope it will become FDA approved in the US. My husband has inflammatory bowel syndrome & the pulmonologist has been hesitant to prescribe the anti fibrotics, especially Ofev.
Hoping that 2022 will see an end to this pandemic!
December 31, 2021 at 7:00 pm #30673
Thank you all for sharing your experiences of Esbriet with me. It has certainly reduced my fears of the side effects.
Dave, Brian, Malcolm and Russell, your positive comments regarding sun burn risk and the lack of nausea give me confidence to follow the recommendation of the Aintree IPF clinic in Liverpool. They offer me the option to revert to OFEV should I not tolerate Esbriet well.
I am less concerned about the sun risk, as I gave up attempting to get a ‘tan’ in my 20’s. I now wear hats (even when they don’t suit me!), long sleeve shirts and long trousers, only backs of hands and face exposed. Russell the idea that you can survive sun exposure on Esbriet in the sunshine of Australia gives me most confidence.
I accept the caveats that we are all different, and may react differently.
Bernard, I note that you are also transferring from OFEV to Esbriet. As I, are you in the British NHS system? Your comments on the nebulised treatment trials are most interesting. The logic of feeding the treatment as near as possible to the site of injury has merit. IPF News has published a number of hopeful therapies, and should I say that we all wait with bated breath. Dear, Dear, Sorry. All I know is that they will be too late for many of us long term sufferers. I failed to pass the entry requirements for the Galapagos trial at the end of 2019. Also, your comment regarding Lansoprazole. I was also prescribed that or a similar protein pump inhibitor. It was to reduce the risk of reflux by passing the sphincter and entering the airway, a suggested cause or irritant to the lungs. I found this combined with OFEV seemed to make the diarrhoea worse. I simply take a proprietary anti-acid on retiring to bed, hopefully to give me protection overnight.
Russell, do you associate the insomnia with Esbriet? My sleep patterns are a bit erratic, but assume that this is due to my advancing years, a couple behind you!
Mike, I have friends living in Fort Collins, a mile high. Once I was diagnosed with IPF I knew that I would not likely accept their long standing invitation to visit. Your average air pressure at 7500 feet is about 11.12 psi, at 4500 feet about 12.45 psi. So, if you moved down, I imagine that you will get a boost of about 12% more air and therefore oxygen. I live at sea level, well under 200 feet, so we here are at a nominal 14.6 psi, so do I get about 33% more per breath? Or is it not that simple?
I am typing this as the New Year bells are ringing. With the advances in medicine that have been demonstrated over the past 2 years, we can hope that an accelerated effective therapy for IPF appears this year.
My good wishes to you all.
December 31, 2021 at 11:52 pm #30674
Isomnia not been a problem for me on either drug.
<p style=”text-align: left;”>I hope this is helpful, and here’s to a better 2022 for us all!</p>
January 4, 2022 at 3:28 pm #30681Dicky GriffinParticipant
Metamucil twice daily helped me
January 4, 2022 at 3:45 pm #30682Tim OrtizParticipant
I switched from OFEV to Esbriet, I learned to mitigate the nausea by taking the pill mid-meal. I slowly tested exposure to the sun to see if I would have a reaction and do not. I bought SPF rated shirts to wear and have made adjustments to wear hats on sunny days, but still no side effect. I have oxygen level average at 88% and will supplement with oxygen when exerting. I will remain active but have to have a day of rest following. Hour long conversations will tire me. I do have to snack between meals, paying attention to diet asI am diabetic. I have been stable for 10 months on Esbriet.
January 5, 2022 at 3:42 am #30687
Thank you for your very informative email. I will take your advice on taking the medication mid meal. I am very concerned about the prospect of nausea. This was also suggested by other participants. I feel easier about the sun burn risks. Living at 54 degrees north means a weak sun strength most of the year, with longer days in summer. Also the fact that I have been avoiding direct sun for the last 55 years. Like you I am surviving with O2 levels at the low 90’s / high 80’s, and also trying to stay active. The ‘walk & talk’ groups give me the option, walk and listen, or slow down and say something!
I am trying to maintain weight despite OFEV, and snacking with ‘rocket fuel’, ie chocolare bars are back on my menu! My sugar levels being OK.
January 8, 2022 at 12:17 am #30709Thomas JohnsonParticipant
I was on Ofev for 12 months. My IPF got worse, so my doctor agreed to switch me to Esbriet six weeks ago. No more diarrhea (thank God), and no side effects from the Esbriet, including no nausea. I’m hoping this trend continues, and that it proves more effective than Ofev. Good luck to you all!
January 11, 2022 at 9:41 am #30714
I, like you are in England, on the south coast. I am 61 and was diagnosed in April last year. Obviously this came a shock to someone who has never smoked and is (was) very fit and healthy. Why do I cough everyday was the start of my journey. Straight away I asked if there were any drugs I could take. Short answer, no. But if my lung function FVC got to such a level I could have the “doesnt stop it slows it down a bit” Nintenidab or Perfenidone. So imagine my delight that in November NICE decided that OFEV could be given at any stage of our suffering.
I wondered about why I would take a pill, and not this drug inhaled. That does not and still does not make sense to my Engineers small brain. I have looked at the side effects of OFEV, I must admit that I am not looking forward to any of the symptoms.
I would like to know how you get on with the switch and of course I wish you all the best going forward. Please post with your updates.
I think someone mentioned it earlier – we need a cure!!
Have a healthy new year everyone.
January 13, 2022 at 8:10 am #30738
Thank you for your contribution, it did make me laugh, ‘engineers small brain’. I was / am an electrical engineer, now retired, the years of study and training does give us a wide understanding of mechanisms, perhaps even biological! Like you, when diagnosed I was as fit as a flea. Never smoked, and at the age of 70 was getting out for about one hour running / jogging / shambling (down grading with advancing years) twice per week. Resting rate at that time 48 bpm or lower depending on fitness level. I was going to try for a local 200 metres record for the veteran’s 70 – 75 age group record, but!
I was lucky in so far that I was prescribed OFEV prior to its approval by NICE. The consultant said that it would be provided on a ‘compationate basis’. I took this to mean, that as I was (had been) in good physical condition they would let me have it. My presumption being that it was being supplied directly by Bohringer Ingleheim’s on their research budget! That was in May 2015, so now 6.5 years down the track, now almost 8.5 years since preliminary diagnosis.
I agree with you that any treatment (engineers brain) should be targeted at the goal, not spread around the field, our body in this case. So, it is logical that a nebulised form would seem to make sense. PF News has had many articles on prospective promising treatments. This is where I get upset, the time to get through trials! Covid demonstrated what is possible when there is an economic driver. That is what we, with our disease, appear to lack. Yet I am surprised by the number of people in our small community in the Isle of Man that I know with IPF.
Let us hope for a break through this year.
January 17, 2022 at 8:31 pm #30767Christie PatientModerator
I have been seeing a common theme in discussions lately about clinical trials often not making it very far due to lack of participants, funding, etc. I think awareness of this disease is something we can all work on to improve the odds of clinical trials and research moving forward. Take the ALS ice bucket challenge for example… what started as a sort of silly social media trend produced actual results for ALS research! Along with widespread awareness of ALS and its symptoms, likely more people are diagnosed early on in the disease and are therefore more likely to be accepted into trials. My dad’s best friend had ALS in the early 2000s and by the time he’d gotten through to a point where they wanted him in trials, his disease was too far progressed for his case to work in the study. It really, really sucked to hear that news on top of what had already been a devastating year for him. Anyway, the point I am trying to make is that PF is not as rare as we think–like you said, you’re surprised by the numbers in your own community. It’s awareness that is really the issue, and we can all do our part to spread that 🙂 One of our new columnists, Sam Kirton is going to write about this soon. Kevin Olson is also a PF activist (calls himself a mobile PF billboard). I’d love to brainstorm with the group on ways to spread awareness outside of our own community here. Maybe I’ll make topic about that later this week. Thanks for keeping the conversation flowing here! Best of luck with the switch to Esbriet, if you decide to go that route.
January 11, 2022 at 10:55 am #30716
In case you missed this article on this site. Mentions some of the current research toward a cure. None yet here are in human trials though.
January 13, 2022 at 9:17 am #30739
I like you am a chartered electonics / electrical engineer, so one more thing we have in common with the IPF and all that.
I am really encouraged by your story and it does give me hope that I might get 8.5 years in like you. I’m not quite at retirement yet, so it would be nice to spend some of that money I have been putting away in the pension pot all these years!
I am a research champion for the APF here in the Wessex region, so I am always looking at new research and any clinical trials that we can get involved in. Like I said we need a cure pronto!
The sooner we can raise awareness, get funding and get more research, the quicker we can be on the road to a cure. In a bizarre way, Covid and lung scarring might have helped that a little bit.
Stay safe, stay well.
January 13, 2022 at 4:40 pm #30744Terrance KrouthParticipant
I took pirfenidone for 3 years. The side effects were not kind to me. I am a bike rider and a golfer, so the sun sensitivity was an issue for me. I covered up a lot and used a lot of sunscreen and was able to manage that.
The problem I had with pirfenidone is headaches. I felt like I had a perma-hangover. One day I just said, I’m not doing this anymore. Interesting side note, my sister was also taking pirfenidone and without even talking with each other about, she stopped too.
I did not take anything for my IPF over 2 years, but the progression returned last year. I started Ofev in July. I am having the well known problems with the bowels. A nurse at Optum call me every few weeks to see how I am doing. We have worked on different approaches over the last several months and we have made a lot of progress on the tummy problems.
I will stay on Ofev. I think it is easier for me to take than pirfenidone. In my experience, people have totally different experience with these drugs. Sadly, this disease runs in my family, so I have seen how three people besides me have reacted to the drugs.
You are wise to try pirfenidone. You just may be able to tolerate it. Be very careful with the sun. This is a big deal. Don’t forget SPF lip balm if you are in the sun.
Best wishes for your successful treatment.
- This reply was modified 1 week, 6 days ago by Terrance Krouth.
January 20, 2022 at 12:18 pm #30810
Thank you Terrance for writing about your experience on Perfenidone. I really do not want to feel ill, or debilitated. I did ‘off’ at times on OFEV (ninredanib) but now, other than bowel problems and weight loss. I have adapted, and tolerate it well now, admittedly on the lower 100 mg dose. It has been the weight loss that has triggered the proposed change, despite the fact that I have regained about 7 lbs over the last 2 months or so.
As a northern man , with avery pale skin, exposure to sun will be a concern, I will take your advice on protecting my lips.
I await my replacement medication, and will update the site with my ongoing experience.
Regards to all, Joe.
P.S. Christie, and Jeff, I will follow up, and ask about raising awareness of our afliction.
January 25, 2022 at 10:29 am #30839
I have just spotted your thread on ‘IPF Awareness’. So will follow you there. Jeff remarked that he is a, “research champion for the APF here in the Wessex region”.
Jeff, what does that mean? Is it a mechanism that raises awareness, and publicity for IPF sufferers?
I got annoyed with the BBC radil the other day as it had a 3p minute programme on a rare (male) affliction, whilst the increasing number of IPF sufferers seem to go unheeded. I suspect that it is the imagined link to cigarette smoking.
Something that I would like to follow up is the ‘familial’ side of IPF. My sister died from the same at 85, hope to make 80, but doubt 81! I wonder about gene testing ot establish if I have any of the mutations that increase our risk.
Kind regards, Joe
January 25, 2022 at 11:33 am #30840
Yes, that’s exactly what the reserch champion role is.
Raise awareness, publicity and raise funds for research into first finding something to stop progression and more importantly find a cure.
Campaigning by the APF brought about the change of NICE to allow all sufferers to be given Nintenidab, so a win for the APF there.
Loads of information on the APF website.
Links on there to become involved in your local area, links to research and fundraising.
Hope there is something there for you.
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