August 12, 2018 at 8:30 pm #13876Elisabetta GambiParticipant
Italian: effetti collaterali OFEV- Cari amici, ho appena letto i vostri commenti ma di solito non scrivo perché il mio inglese non è così buono, comunque mi piacerebbe avere un suggerimento da voi per la mia situazione attuale rispetto di ofev.
Translation: side effects OFEV- Dear friends, I have just read your comments but I usually do not write because my English is not so good, however I would like to have a suggestion from you for my current situation regarding ofev.
Italian: Ho 2 diagnosi diverse di un ipf (Italia aprile 2017) con possibile uip -uno ipaf connesso un connecitve tessu con fibrosi polmonare (Londra, maggio 2017) no uip.
Translation: I have 2 different diagnoses of an ipf (Italy April 2017) with possible uip -one ipaf connected a connecitve tessu with pulmonary fibrosis (London, May 2017) no uip.
Italian: Ad ogni modo tutti i dottori erano d’accordo sul fatto che le prime droghe per me erano di certo. per 7 mesi in cui non ho effetti collaterali, comincio ad avere crampi addominali e diarrea molto forti …. quindi ho provato da gennaio del 2018 a prendere i probiotici e qualcosa è cambiato un po ‘e mi sento meglio ma mai e poi mai bene .
Translation: In any case, all the doctors agreed that the first drugs for me were for sure. for 7 months in which I have no side effects, I start to have abdominal cramps and diarrhea very strong …. so I tried from January 2018 to take probiotics and something has changed a bit ‘and I feel better but never ever good .
Italian: Alcuni giorni sono brutti giorni e altri buoni giorni (o notte) senza regole. Sono molto severo mangiando solo cose senza latticini o altre cose con le fibre … ma nonostante tutta questa attenzione ci sono giorni e notti cattive. Un mese fa un soffrire molto con i crampi addominali drammatici … è molto difficile ma si può dire la mia fibrosi potrebbe peggiorare, quindi devo dire se devo resistere e continuare o meno … Mi piacerebbe trascorrere qualche giorno in vacanza, ma posso gestire questa condizione …. il dottore mi ha detto che non va bene fermarsi per un po ‘. Per combattere i crampi addominali sto assumendo fermenti lattici (VLS), capsula di newpsillio (solgar) sciroppo di Microflorana e cacao biodophilus (solgar) …
Translation:Some days are bad days and other good days (or night) without rules. I’m very strict eating only things without dairy or other things with the fibers … but despite all this attention there are bad days and nights. A month ago a lot suffer with dramatic abdominal cramps … it’s very difficult but you can say my fibrosis could get worse, so I have to say if I have to resist and continue or not … I’d like to spend a few days on vacation, but I can handle this condition …. the doctor told me it’s not okay to stop for a while. To combat abdominal cramps I am taking lactic ferments (VLS), newpsillio capsule (solgar) Microflorana syrup and cocoa biodophilus (solgar) …
- This topic was modified 3 years, 9 months ago by Charlene Marshall. Reason: translation
August 13, 2018 at 7:55 pm #13894
Grazie mille per averci contattato e benvenuto nei forum PF! Non preoccuparti del tuo inglese, ho tradotto quello che potevo e penso che tu abbia fatto un grande lavoro. Spero che la mia traduzione di nuovo a te funzioni bene? Fammi sapere se posso fornire ulteriori chiarimenti per te, ma volevo assicurarmi di condividere la mia esperienza con te su OFEV ….
Mi dispiace tanto che stai sperimentando lo sgradevole effetto collaterale dei crampi addominali con questo farmaco.Il tuo dottore ha mai parlato con te di come sarebbe lo sviluppo di una reazione allergica all’OEF? Penso che sia raro, ma sembra che il tuo corpo non lo tollererà più facilmente. Forse la dose deve essere aggiustata? Quando andrai dal dottore, questa sarebbe una buona cosa da allevare con lui o lei.
Penso che sia importante parlare con il medico prima di fermarlo, perché hai ragione: non vuoi che la tua fibrosi peggiori non assumendo più il farmaco. Ci sono farmaci da prescrizione che possono aiutare con crampi e feci molli, come spiacevoli come quelle di cui si parla. Forse chiedi al tuo farmacista / chimico di loro? Ti auguro buona fortuna nell’affrontare questo numero Elisabetta. Speriamo che anche altri rispondano al tuo post con alcune idee su come farlo andare via per te.
Prenditi cura, e sentiti libero di scriverci in qualsiasi momento! Cordiali saluti, Charlene.
Thank you so much for connecting with us, and welcome to the PF forums! Don’t worry at all about your English, I translated what I could and I think you did great. Hopefully my translation back to you works alright? Let me know if I can provide further clarification for you, but I wanted to make sure I shared my own experience with you about OFEV….
I’m so sorry you’re experiencing the unpleasant side effect of abdominal cramping with this medication. Did your doctor ever talk with you about what the development of an allergic reaction to OFEV would be like? I think this is rare but it does sound like your body may not be tolerating it as easily anymore. Maybe your dose needs to be adjusted? When you go to the doctor next, this would be a good thing to bring up with him or her.
I do think it is important to speak with your doctor before stopping it, because you’re right: you don’t want your fibrosis to get worse by not taking the drug anymore. There are prescription medications that can help with cramping and loose stool, as unpleasant as those things are to talk about. Maybe ask your pharmacist/chemist about them? Wishing you the best of luck in addressing this issue Elisabetta. Hopefully others will respond to your post as well with some ideas on how to make it go away for you.
Take good care, and feel free to write us anytime!
August 13, 2018 at 10:48 pm #13895Chuck HarrisonParticipant
My experience with ofev turned out not only cramps but with some accidents . I was taking 150 a day x 2 300 per day . I ended up in the er because my pc looked at me and said I had to go . With all the diarrhea mutable times through out the day and night I was losing all sorts of minerals and such even with glucerna and gator I was losing fast. In the er I was giving fluids x2 bags , my pulse ox when I got ther was 78 , and my tact was 138 steady , I truly felt like I was on my way out , but they brought me around and the didn’t admit me .
The next day my wife called the ofev rep , great guy named John , and he said there would be no problem on taking a 2 week vacation from ofev , in that time he got together with my pulmonologist and had the ofev dropped down to 100 x 2 . I have been doing that for at least six months and just have had one occasion. But the rep and my pulmonologist had no problem with a two vacation from ofev .
Hope this helps someone ! It’s such a terrible disease ! Hope all have good days out there .
August 14, 2018 at 12:52 pm #13908
Thanks for contributing your thoughts and experiences pertaining to this topic thread. It is always nice to hear from others!
That sounds like such a terrible experience with OFEV Chuck, so sorry you went through that. I am glad you went to the ER though and had the dose adjusted, as you’re right, you’d also be losing excessive amounts of fluids on top of the vitamins and minerals. I’m also glad to learn about the two week vacation from OFEV, as sometimes I wonder about this but always neglect to ask my pulmonologist about it. It has been helpful for me, and I am sure it will be for others who read this in future as well. Thank you again for sharing!
April 16, 2022 at 10:24 am #31704Ruth HarndenParticipant
Have you tried taking Immodium for the diarrhea. It works for me. Ruth
August 22, 2018 at 3:49 pm #14037AnonymousInactive
I had a very similar problem. A doctor friend suggested I take Metamucil (or something similar) :mid-day, so it does not interfere with the absorption of the medication. It has really helped.
August 23, 2018 at 8:54 am #14050
Thank you so much for getting in touch and sharing this tip with us re: managing the abdominal cramps. This is something I’ll remember in future, as I am on OFEV and fear this side effect happening similar to how it did with Elisabetta. So glad to hear it has been helpful for you, and that this has been resolved for you. Thanks again for sharing!
August 23, 2018 at 8:59 am #14052Sheila BlanchardParticipant
I also had cramps and bad diarrhea with Ofev.I was admitted into the Hospital as my Magnesium was almost nonexistent I was in hospital for almost two weeks and was told that I could have died my pulmonary Dr. Told me not to take any more Ofev as my IPF seemed to be going slowly so she didn’t want to rock the boat
August 23, 2018 at 9:11 am #14056
Wow, thank you so much for sharing your experience around OFEV, although I am so sorry it wasn’t a positive one. Two weeks admitted to the hospital as a result of a drug, that sounds terrible. Did your doctor link your non-existent/low magnesium directly to OFEV, or did they ever specify?
Glad your IPF is progressing slowly, and I hope this continues for you for a long time so there is no need for anti-fibrotics and all the awful side effects that can come with them. Wishing you well Sheila, and thanks again for getting in touch with us.
August 25, 2018 at 4:03 pm #14103Susan thomasParticipant
I have been on ofev since march 2015 and have had continual diarrhea and cramps from severe to mild . My dr has recommended i go off for a month or so and intend to do that in october when we usually go to florida. He said a few months would not compromise the effects of the ofev which have keep me stable for three years.
August 26, 2018 at 8:31 am #14108
Thanks for sharing your experience with OFEV, although I am sorry to hear it hasn’t been a very positive one for you. Interesting that your doctor suggested you go off of it for a short period of time, then did he say to start back on it at the regular dose you’re taking now, after the month? Good idea to go off of it, and hopefully be rid of the unpleasant side effects while in Florida. Enjoy your trip! Glad to know that going off of it for a month or so at a time won’t compromise the effects, and glad to hear it has helped you remain stable. That is excellent news!
September 13, 2018 at 1:44 pm #14414Jacki BaumParticipant
I had diarrhea with OFEV, was on 150 twice daily and basically was unable to leave the house until early afternoonl, I did take Imodium, that caused constipation and so I had another issue. My dr said Imodium is strong medicine, take 1/2 pill, that worked. But the diarrhea continued. My Drs took me off OFEV for 4 days, and lowered my dosage to 100 twice daily, and I feel like I got my life back. I am playing golf, shopping with friends, going out to dinner, it is awesome. I will see my Drs in late October and they are talking about upping my dosage to 150 again. They said I may tolerate the higher dosage after this break. I do not know if a lower dosage is as effective as a higher dose, and this has me concerned.
September 19, 2018 at 8:04 pm #14486
Thanks for getting in touch with us and sharing your experience with OFEV. I always find it really helpful when others take their time to share about their experience with an anti-fibrotic medication, as the side effects seem so different for everyone. Sorry to hear however that the side effects were so unpleasant for you initially with OFEV. That is discouraging, and glad to hear that it has been resolved so you can do all the things you enjoy again! That is wonderful news — enjoy your golfing days as the summer is winding down 🙂
Goodluck with increasing the 150mg dose again, perhaps your doctors could pair it with a drug to help with the diarrhea to keep you from experiencing it again? Your concern about a lower dose not being as effective as the higher one is a good one, hopefully the specialist can shed some light on this for you. Take care and goodluck with your appointment in October!
October 27, 2018 at 11:12 pm #15032Roger ColesParticipant
Like all the comments in this section I too have had problems from time to time with Ofev. I undertook a trial for the drug here in Australia after being diagnosed with IPF some 18 months ago, and after the trial was put on Ofev by the trial doctor. At first there was no problems, but some 12 months later – earlier this year – I developed diarrhea and cramps as experienced by other writers. I though it was something in my stomach that was causing an intolerance to certain foods i.e. those being dairy and gluten based food like bread and certain cereals. I didn’t realize that even though initially I had tolerated Ofev quite well, you can have a situation where your digestive system rebels against it. I had numerous visits to Gastroenterologist Dietitians, etc where tests were made which showed I had no internal problems and should be OK consuming dairy and bread. I finally decided to phone the consultant who I had been working with during the initial trial for Ofev and was totally floored when she told me that even though initially your system could accept Ofev, over time you can build up an intolerance to the drug when taken daily. As I was going to Vietnam for a 3 week holiday, the thought of trying to plan my trip around available toilets was pretty daunting. She advised that I take a “medicine holiday” and stop taking Ofev till I returned to Australia. As soon as I stopped the medicine the diarrhea and cramps disappeared and I had a great time. Since restarting the Ofev for some reason it has not returned to the severe cramps etc I had previously experienced. I am on 150mg twice a day. Knowing what was actually upsetting me was a major factor in accepting this could be a continual side effect to some degree for the rest of my life.
- This reply was modified 3 years, 7 months ago by Charlene Marshall. Reason: formatting
October 30, 2018 at 8:20 am #15088
Thank you so much for writing to us and contributing your experience to this topic thread. I find many of the folks on this forum understandably want to learn as much as they can about the two anti-fibrotic medications available for IPF. I’m so sorry to hear about the unpleasant side effects you experienced with Ofev after the length of time you were on it. Sounds like that is common and can happen with this drug, even a significant time after being on it. Like you, I am shocked to hear how ‘common’ it is for people to develop an intolerance to the drug after taking it daily. That is so hard to believe, but makes sense given your experience and that of other writers. So sorry that was your experience!
I am glad to hear that post “medication holiday” the symptoms have not as returned so severe… I’ll keep my fingers crossed that this remains the case for you. Thanks again for sharing these details with us, I am confident they will be very helpful for others.
September 26, 2021 at 3:04 pm #30053
Hi Charlene and other participants,
I seem to have an answer!
This thread is appropriate to my situation, if rather dated. As noted in my following enquiry of yesterday. The suggestions of an OFEV holiday seems appropriate for me. So propose to take a week off.
This was my enquiry:-
I have been on OFEV now since May 2015. Initially on the usual 2 x 150 mg for about 9 months to a year.
The usual gastric / intestinal problems resulted in a reduction of the dose to the 100 mg tablets. This has been now my regular dose for over 5 years. During that time my intestinal problems have generally been under control with occasional upsets.
I have recently been having an ongoing upset which makes me feel generally unwell.
I would like to ask the question; has anyone taken a rest from OFEV, maybe a week or two allowing the bowels to settle / recover?
September 28, 2021 at 8:41 pm #30095John KaneParticipant
Have been on Ofev for two years 150 mg x 2. Y gastric issues were very strong and constant until I stopped drinking coffee…Now I would say that they have been reduced by half, as far as cramps go. The diarrhea continues, but not as bad as before. I believe that the acidity of the coffee added to my side effects.
October 5, 2021 at 8:56 pm #30138Dennis BroetzmanParticipant
I have had diarrhea problems with Ofev and realized my morning coffee was most of the problem. I developed gerd issues also but found that sipping on a large glass of water with 2 table spoons of apple cider vinegar and honey has completely taken care of my gerd issues. I pour it in a water bottle and keep it with me most everywhere. It has been such a helpful simple thing.
October 7, 2021 at 4:00 am #30152
Hello John and Dennis,
Thank you for your replies.
John, I did not drink a lot of coffee, but enjoyed an occassional Latte. Like you, I eventually, after a lot of years, identified a link with coffee and a reaction in my bowels. So, I have also stopped.
Dennis, Thank you for your suggestions, also identified coffee as a problem. I have taken up your apple cider vinegar and honey drink. It is most pleasant. I was looking for something, other than the usual beverages, to maintain hydration. A friend suggested a slice of cucumber in a litre of water, but it was not to my liking.
Thank you for you support, anf of all on this site.
October 22, 2021 at 3:11 pm #30278Kay RobertsonParticipant
I started Cellcept 3000mg in August and Ofev 150mg 2x daily in September. I also take Omeprazole 40mg 2x a day for acid reflux. I have had no diarrhea must be odd man out because I have gas, bloating and constipation. I was constipated for 3 days and was told to take Colace. Finally went on 4th day (with severe cramping) and was told to discontinue Colace. However, since that day, I am now on my 4th day again being constipated and started Colace again.
Has anyone had constipation and what helped?
October 23, 2021 at 5:29 pm #30280Rosanne SmithParticipant
- I can’t answer your question as I also new to taking OFEV. But when I am constipated ( it usually last two days )I drink a ton of water and eat dried prunes soaked in hot water.
- I was curious as to what Cellcept and Collace is.
October 23, 2021 at 5:46 pm #30281Kay RobertsonParticipant
Thanks for your advice. Cellcept (Mycophenolate Mofetil) is used to treat autoimmune diseases and reduce inflammation. I have also been diagnosed with Scleroderma which may or may not be the cause of my IPF. Colace is what the Special Pharmacy pharmacist recommended for the constipation. But it really isn’t working.
Hope you make out better with the side effects.
October 26, 2021 at 10:36 am #30285
A couple of notes:- my local care team do not seam to understand that the bowel troubles on OFEV are variable. Periods of relative stability ( Oh! Joy) interspersed with periods of discomfort & diarrhia. Also weight loss.
Their latest proposal is to swap me onto Esbriete (Perfedinone). I feel a reluctance as nausea seems to be a side effect, one that I would not react well to. Am I being suspicious in the motivation for the proposed transfer, as the UK approval authority, NICE, has recently approved OFEV for non IPF use and they need the resources?
Also, on Thursday, I see a dietician to check my eating habits, and to see if diet change may help me maintain or increase my weight. I am 5ft 11 ins and 140 lbs, having lost 10 lbs this year, and about 10 in the preceding 4 years. I am taking photo’s of my meals to demonstrate my present diet!
Good luck all, when is a new better control going to appear?
October 26, 2021 at 2:36 pm #30286John FrazeParticipant
I have been on OFEV for almost 3 years. I take 150 mg twice per day. At first I had minor abdominal cramps and still do. I started have diarrhea to the extent it was aggravating so I started taking Imodium. It controlled it somewhat. I started taking one every other day and it helped some. I changed to one every day and and that helped even more so now I’m taking 1 in the morning and 1/2 at night. That seems to control the diarrhea pretty well. I only have to go once or twice per day but it seems that every few days I still have a watery stool. My IPF seems to be progressing but very slowly so far.
Hope this helps.
October 26, 2021 at 3:59 pm #30288Ron BishopParticipant
I’ve been on OFEV since August. The first 2-3 weeks were without side effects. However since then is a daily battle with severe cramping, gas and diarrhea. My diet consists of fats and protein with little to zero fiber and no coffee. To date, I’ve not found an answer for relieving this continual discomfort.
October 27, 2021 at 7:11 pm #30310Randy BakerParticipant
<p class=”p1″><span class=”s1″>This is my first time writing on this form. I also have been having diarrhea and cramps. I’m on 150 mg of Ofev twice a day. I had been taking it for 10 months by December 2020 and shortly after that the diarrhea started. My Dr. then put me on 100 mg twice a day, for about 2 months. This did stop the diarrhea and cramps, but the Dr. said that the study on Ofev showed to be helpful at 150 mg. So it was my call to either stay on 100 mg or go back on the 150 mg, which I did increase to 150 mg. The diarrhea and cramps came back. Then speaking to Ofev nurse that calls me monthly, said the Ofev seems to cause me to be Lactase intolerant. She suggested watch my intake of dairy<span class=”Apple-converted-space”> </span>products. For the diarrhea she suggested to take Imodium with my morning dose of Ofev. This worked for about 6 to 8 days then the diarrhea and camps come back. My wife being a nurse suggested I take Lomotil. I called my doctor and had her give me a<span class=”Apple-converted-space”> </span>perception for this. When I’m away from home and start to fill cramps, I take the Lomotil and it controls the cramps and diarrhea better. I still take the Imodium daily, but the Lomotil gave me the confidence that accidents wont happen while I’m away from the house.</span></p>
December 9, 2021 at 7:28 am #30584Dennis BroetzmanParticipant
I have been on 150 mg of Ofev twice a day since August. I started out taking 20 mg of famotidine twice a day but after about 2 months I started getting cramps and minor diarrhea. I switched to 20 mg of Omeprazole once a day at least 30 minutes before my morning Ofev and make sure I take the Ofev with food. This took care of about 90 % of my stomach problems . Unrelated to this but I have begun to push myself on my eliptical workout and my cough has decreased. One year ago I could do 30 minutes on the eliptical very easily. Two weeks ago I struggled to do three minutes and now up to 5 minutes and feeling better physically and mentally. Don’t give up, push yourself to stay active. Thank you for letting me be part of this site.
December 9, 2021 at 10:20 am #30585Ron BishopParticipant
Thanks for sharing your encouraging story.
December 9, 2021 at 2:54 pm #30589Phyllis Della-LattaParticipant
It is very disappointing that the manufacturers of Ofev & Esbriet have not researched an alternate route of transmission of these drugs (i.e.transdermal)or at least alter the drug formulation to decrease these side effects. When taken orally they wreak havoc on the gastrointestinal tract, upsetting the microbiome. Tolerating the dreadful side effects might be acceptable if these drugs actually reversed scarring but they don’t. Just stop progression, possibly. PF is a debilitating illness in & of itself & taking meds that further decrease quality of life is a “bitter pill” to swallow.
April 14, 2022 at 9:09 am #31684Patrick CoghlanParticipant
I experienced lower abdominal cramping last night and have been keeping a list of foods that I suspect might be the cause. Since I had part of a chocolate bar yesterday I’m thinking I might have to quit this treat.
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