• Questions about Ofev

    Posted by Maria Donihoo on March 13, 2023 at 7:53 pm

    I started Ofev in January 2023, after having an open lung biopsy, and I only took the medicine for 3 days when I started getting really high blood pressure and I was really dizzy to the point of almost vomiting. I called my doctor and he said to stop it and see what happens. Well I haven’t taken it since then and it is now March 2023. My doctor asked me to start taking it again and see what happens, but I am very skeptical about taking it. I am still working as a teacher and I cannot work with those symptoms. Has this happened to anyone else? If I keep taking it will the symptoms go away eventually? My pulmonologist can’t answer these questions, so I am asking for opinions from people who have been taking Ofev for a while. I am retiring this coming May and I hope I can concentrate more on my health and taking care of myself. Any insight would be appreciated!

    Maria (Tina) Donihoo

    Bruce F. replied 1 year, 3 months ago 19 Members · 23 Replies
  • 23 Replies
  • Keith Emery

    Member
    March 14, 2023 at 10:05 am

    Hi Maria, I too started Ofev in January 2023, now into week 10. I have nausea and vomiting together with Diarrhoea several times each week and lots of wind/gas. My Consultant Pharmacist assures me that through time this will pass. I am determined to stay with the drug as its benefits outweigh the drawbacks i.e. slowing of the progress of the fibrosis which lengthens my life span, albeit for a few years – the alternative is worse, in my opinion. Persevere Maria, best wishes.
    Keith

    • Kim Morrison

      Member
      March 21, 2023 at 3:25 pm

      Talk to the speciality pharmacist and they should be able to answer your questions. Then I would talk to your dr that is over seeing your bp. They may be able to adjust meds for bp

  • Ghouse Basha Shaik

    Member
    March 14, 2023 at 10:54 am

    Hello Maria,

    I started taking Ofev from March 08, 2023 and today is my 7th day. Fortunately I don’t have any side effects whatsoever till now. I think Ofev’s side effects vary from person to person.

    Ghouse

  • Debra Kurt

    Member
    March 14, 2023 at 2:42 pm

    I want to share what I have been doing since on OFEV last Nov… I too was not tolerating OFEV at 150mgs..I tried until Feb.  then my doctor changed my dosage to 100mgs much better, but this is a must: (for me anyway) try to get between 20 and 30 grams of protein each time you take it… I take a 1/2 pure protein shake (15g of protein) and a 1/2 of an Elevation protein bar (5g) most each day, If I have a protein pack dinner I take it then.  Seems to help with cramping, diarrhea have not had vomiting since first couple of weeks on 150mgs. In November…

     

  • Donald Salzberg MD

    Member
    March 14, 2023 at 2:43 pm

    Hi Maria. I had an open lung biopsy in 9/2018 and started OFEV soon after pathology came back IPF. I had intermittent diarrhea (still do) and nausea. For the past two years I chase the OFEV 150mg (2x a day) with Zofran 8mg. By accident a week ago I neglected to take the Zofran and two hours later I was quite nauseous so it likely does not fully go away. I have not had ⬆️BP though. Maybe with starting at a lower dose (100mg) and increase if tolerated.  As Ghouse states—side effects vary widely as does the disease itself from person 2 person. I will get a 2-3 period with diarrhea but it passes and is less frequent over time. I try not to take OFEV on an empty stomach. I feel strongly that as it’s one of only two APPROVED meds for IPF—one should try to use it if available & affordable. One study showed a median life expectancy of 11.6 years on an anti-fibrotic vs 3-5 years without. Don’t know the details of that study but my Pulmonologist has a patient with IPF diagnosis (not on oxygen) for 15 years. Im symptomatic for 6-7 years (diagnosed 4.5 years ago) and doing well. Maria the vomiting I suspect is a SE of the Ofev and not elevated BP but anything is possible. Again consider Zofran. There is also a SL (sublingual—under the tongue)  which is also great to have as it’s effects are rapid.
    Don Salzberg

    • Donna

      Member
      March 14, 2023 at 3:09 pm

      I just got OFEV Friday and so hesitant about starting. I jumped thru hoops getting it with insurance, Dr., Pharmacy now it sits. I had a bad experience with Pirfenidone so sick finally Dr. took me off. I already have a lot of GI issues due to no Colon, no Gallbladder and it has been very difficult since I had the surgery 2 years ago. I dread the thought another round of possible side effects and the Specialty Pharmacy told me all of them. I do know the alternative Diagnosed Early Stage 6 years ago last year due to Pneumonia first change.

  • Joseph Lovett

    Member
    March 14, 2023 at 2:52 pm

    My physician introduced Ofev to me very slowly. ! pill every other day, that 1 pi;; a day, then, two pills one day with one pill the next, and finally 2 pills a day. So far I tolerate it fine, but my blood pressure has increased and my visual field has worsened.

  • Donald Salzberg MD

    Member
    March 14, 2023 at 3:00 pm

    Hi Joseph. Why has your visual field worsened? Are you on meds for glaucoma?

  • José

    Member
    March 14, 2023 at 3:36 pm

    My problem is just the diarreah and loosing apetite. I just got switched to Esbriet. Can’t wait to see how it will work on me. But Ofev has taken 20% of my body wight.

     

  • Alan

    Member
    March 14, 2023 at 3:54 pm

    I am a 72 year old male active and  healthy except for the IPF and I’ve been on 150 mg of  Ofev 2x a day for  a year now and for the first couple of months the diarrhea, nausea, gas and bloating were pretty intense.  I received advice from my primary and pulmonary doctors and also from the Boehringer/Ingelheim support. Most of it was to take the pill with food and if I had a problem take some anti-diarrhea or other meds to calm my system.  I was getting pretty frustrated and then I noticed the foods I usually eat were not tasting the same(were not tasting good) and my appetite was not what it use to be.  Kind of knowing that my present life style was not working I decided to make some changes. And now I can say I am pretty much out of the rut of eat, pill, and then toilet.  How, you say.  I have completely changed the foods I eat, way more baked,steamed and fresh foods. I have gone into some stir fry which so far so good and I stay on a routine  with my meals. Solid breakfast with a light lunch and then decent dinner.  I  read where people take Ofev on empty stomachs and that is such a no-no from everything I have read and lived.  I have learned what works for me is to take the Ofev 5 or 10 minutes after I have eaten my complete breakfast or dinner. I might have a slice of pie  or some fruit after I take it and maybe a cup of tea. Everybody is different and what works for one is surely not for everybody but I do think that eating foods that work with you instead of against you is a key and also taking the Ofev after you eat gives your system a chance to start the digestion before the Ofev challenges it.

  • Charlotte Smith Butler

    Member
    March 14, 2023 at 4:03 pm

    I Started OFEV  8 months ago- I had some problems with nausea and diarrhea initially that were well controlled with Imodium.    However, eventually the Imodium did not work as well.  I went off for a few months and felt better.  I plan to go back on again and see how I do with the side effects.

  • Charles

    Member
    March 14, 2023 at 6:48 pm

    Hi Maria. First, and not trying to be negative, but there isn’t a pulmonologist that is worth their salt. A good one is as elusive as the correct spelling of the word pulmonologist. Can’t even find a correct spelling for it in a dictionary or even spellcheck. For what ever the reason they are not up on the many different things that are out there that may help us. There is Zinc also red therapy #4 (i think that is what they call it) and many others that in my decade of having this wonderful disease i have been told about. Fortunately, i have never had any obverse reactions to OFEV, however,i take 150 mg twice a day. Don’t know what amount you are taking, but if 150, it might be smart dropping to 100. I am not a doctor so you should check with your doc, although i may may know more than he does as well as the people who have answered your call for some helpful information. Hope that this gives you a path to follow. Charles “Chuck” Gerson

  • Maria Donihoo

    Member
    March 15, 2023 at 7:01 am

    Thank yo so much for your reply! This is truly a wonderful site with people who care about each other and share their experiences of what they have gone through. I will eventually try the Ofev again after I retire in May. I’m just dreading the side effects I had ( night blood pressure and dizziness).  My pulmonologist actually asked the nurse how much he should start me on Ofev! Can you believe that? I feel I have to do a lot of my own research on this disease! Whatever I find in research I will share on this site!
    Thank you again and God bless!

  • Maria Donihoo

    Member
    March 15, 2023 at 7:05 am

    I forgot to mention I am on the 150mg. 2 times per day! I also normally have high blood pressure but it has been under control!

     

  • Stephen M. Winsett

    Member
    March 16, 2023 at 12:16 pm

    I took Ofev 150 xtid for 3 months and had so many gastric problems and pain; I went off it for a week and got much better; so then back on for 3 more months, same problems except now I have developed a fistula between my bladder and colon in November 2022.  Up to then I had lost 40 lbs (which I needed to lose) and food was down to soup and oatmeal.  They took me off Ofev immediately and since I have IPF they are tryihg to figure out a way to treat my fistula without major surgery.  My pulmonologist was of no help through any of this and actually seemed surprised by my condition (hasn’t he ever read the warnings on the Ofev publications?).  He wants to try Esbrite, the other pill, but I am not so sure I am willing to try another gut wrenching med.  I would rather enjoy my life, diet, and not suffer through the agony that I went through before trying to extend my life span.

  • Kathy Whitehead

    Member
    March 17, 2023 at 7:02 pm

    When I first started Ofev on the 150 mg dosage, my body would not tolerate it. My liver numbers went sky high after only being on it about a month and a half so they stopped me on it and then three months later I tried again, and had the same results.  In October 1922 I started on the 100 mg and except for the diarrhea (which is no fun ) I have no side effects on that and my liver numbers have stayed normal.  I would suggest going down to the 100 mg it seems to be working just fine.  I would at least try it for a while and then maybe try to go back on the 150 mg.

    • Kathy Whitehead

      Member
      March 17, 2023 at 7:03 pm

      That would be 2022 🤣😂

  • Deleted User

    Deleted User
    March 21, 2023 at 12:41 pm

    did not try OFEV as the cost, even with insurance, was astronomical.  My mom is on Esbriet instead.  She has lost appetite and weight but no other issues.  Just wanted to tell people who are struggling with cost of these drugs to seriously check into the manufacturer’s programs for access.  Mom gets her Esbriet free from the Genentech Foundation.  Google it.  Only requirement was that her income was below $75,000 a year.  No problem!

  • Donald Salzberg MD

    Member
    March 21, 2023 at 2:18 pm

    Hi Daughter:

    There are also foundations that offer grants to assist in co-pays which do amount to $9-12,000 per year. The Co-Pay Assistance Foundation and Healthwell Foundation are excellent and have provided me with co-pay assistance for the past 3 years as my income is low after I retired. Medicare does cover OFEV but that’s dependent on Part D plans. One is likely to double one’s life expectancy if on an antifibrotic assuming one can tolerate it and what degree of Fibrosis you have. I’ve read only 50% of patients with correctly diagnosed IPF are taking antibiotic meds. That’s shameful.  My early fibrosis (2017) was missed by the Radiologist and internist. That’s not on my Pulmonologist, who started me immediately on OFEV once i had a diagnosis.
    Don

  • Carmen Quintas

    Member
    March 21, 2023 at 6:46 pm

    I have been on OFEV since March 2022.I started on 150 mg 2X a day but had severe stomach issues.I am now on 100mg 2 X a day.I am tolerating it much better.I tried what someone here recommended,and it has made  a huge difference.I drink half of a protein shake ,have breakfast and then take OFEV.I then drink the other half of the protein shake.
    Two protein shakes which are quite tasty are Premier,and Pure Protein.Each of these has 30 grams of protein in an 11 oz container.I drink a large cup of ginger lemon tea with the OFEV .Ginger is very helpful for nausea .I also have found that room temperature water is much better tolerated than cold water.Cold water is a shock to the stomach.

    I think that a high protein intake is key in tolerating OFEV.

    Lastly, sipping ginger ale throughout the day was helpful to me in controlling the nausea.That has now gone away completely

  • Martha

    Member
    March 22, 2023 at 7:54 am

    Dear Maria, I have to wonder if something else is going on to make the BP go crazy. BP problems are so common and can be caused by many things. Do you monitor it off Ofev? Often an endocrinologist, primary care MD or cardiologist can help in sorting it out. Even significant obstructive sleep apnea can make BP go crazy. Hope you feel better soon! Martha

  • Michael Burd

    Member
    March 22, 2023 at 12:01 pm

    I was diagnosed IPF 3 years ago and started with OFEV soon after. Main side effects have been diarrhoea which I have learned to avoid by careful food management and 12 hour spacing of the daily doses. I find a substantial morning breakfast most important and taking the OFEV capsule immediately afterwards. The best morning food for OFEV seems to be a good bowl of porridge, toast, fruit and lots of tea as it helps to stay well hydrated. 3 years on and the IPF has progressed and lung function declined so that I need constant oxygen therapy.

    My other medications are Gabapentin for cough control and Carbocisteine for sputum control. I have also been taking a reducing program of Prednisolone steroids after a pneumonia AE that put me in hospital for a few days in January. It is important to make a daily temperature check for first signs of infection that we are susceptible to.

    My final advise is ALWAYS take OFEV immediately after food and better to miss the dose if food not available.

    King regards, Michael

     

     

  • Bruce F.

    Member
    March 24, 2023 at 3:12 pm

    Hi Maria—

    Sorry to hear  about your diagnosis, but glad to see you reaching out.

    Edible cannabis has helped me with the constant nausea and loss of appetite.

    I have been on OFEV 150 mg twice daily for 10 months after being diagnosed with IPF.  I am otherwise healthy and in my late fifties.

    My experience with OFEV rhymes with much I’ve seen in this thread: vomiting at least once a week, nausea, loss of appetite, and powerful fatigue.

    I have followed the suggestion to eat protein with each dose of the medicine.  I drink a protein-packed smoothie for my morning dose, and usually get through the day without vomiting—but with zero appetite, which makes any form of exercise seem impossible.  I order cases of protein powder and shakes, and consume them every day.  My pulmonologist is telling me to take Zofran sparingly.

    I do find that eating cannabis in the early evening helps quite a bit with the nausea and appetite.  The CBD and other non-psychoactive products that are widely available do not help with nausea or appetite.

    With this in mind, I typically ingest 25-100 msg of Delta 8 THC about an hour before dinner, and I am able to eat a good evening meal—usually only solid food I ever eat.  I also find the cannabis helps with sleep, which I have struggled with for years.

    My Delta 8 dosage varies; I would start with your doctor’s knowledge, and I would start at a much lower dose until you are comfortable with the effects.  But this has been the only way I seem to shake the nausea long enough to eat a proper meal.

    I believe Delta-9 THC is stronger per mg. than Delta-8 THC.  Depending on where you live, a knowledgeable dispensary employee can steer you to a dose that suits your needs.

    I am a fellow teacher hope you can continue to teach while taking OFEV.  I do not have it in me.  I left work after the terrible fright of teaching in person during the pre-vax year, and for me the fatigue from OFEV would make those 60-hour work weeks pretty tough.

    Be well!  Glad you found this board, and hope some of this helps.

    Best regards to all!  Any ideas on reducing nausea are welcome!

     

     

     

     

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