Pulmonary Fibrosis News Forums Forums Treatments and Science Ofev (Nintedanib) Started Ofev…one week in now

  • Charlene Marshall

    Member
    June 28, 2019 at 8:10 pm

    Hi Marianne,

    Thanks for your reply and I hope this note finds you doing well!

    I’m really glad to hear that you have the flexibility to work from home, especially during pulmonary rehab, and that your boss is supportive. It is always nice when employers are willing to add accommodations in for us that make our lives just a little easier!

    Wow, the story of the man in your pulmonary rehab program sounds amazing. I didn’t think they would consider a lung transplant if he is already a heart recipient due to antibodies and immunosuppressant drugs. That said, OSU is a great centre and sounds like they have confidence that it will go well. I hope his wait isn’t too long either. Really glad to hear that pulmonary rehab seems to be doing well for you, and you’re finding it beneficial. Keep at it 🙂

    If you have any questions about Ofev, feel free to reach out. I’ve done quite well on it but I know many who haven’t tolerated the gastric/GI issues.

    Talk soon,
    Charlene.

  • marianne

    Member
    July 12, 2019 at 12:38 pm

    Update guy listed for lung transplant had heart by-pass a few years ago, so he did not have a heart transplant.  He comes to rehab every week but really looks like he is exhausted most of the time.

    John L. – Are you still doing well with OFEV?

    I applied for SS and will soon start receiving payments from them.  I am still on hold on getting OFEV.  When I retire from working, I should be able to get some help with payment for my medicine.  Seriously thinking of retiring by the end of 2019.

    Rehab is still going well.  I just finished my 4th week of rehab.  My oxygen levels and BP are great before rehab and oxygen levels go up after rehab.  Oxygen levels usually in mid to high 90’s.

    I started back to yoga this past week.  I only go to yoga once per week and rehab 3 times.

    Thank goodness the heat and humidity levels are better today in Columbus.  This week has not been fun with 90’s and high humidity levels.

    Hope everyone has a great weekend.

    Regards,

    Marianne

     

     

    • mark-koziol

      Member
      July 13, 2019 at 7:08 am

      Hello Marianne, thanks for your update. I’m pleased to hear about your progress in pulmonary rehab. Keep up the good work and you will continue to see improvements. Watch yourself today, I know it will be hot and humid in Ohio. Mark

  • cindy-sears

    Member
    July 15, 2019 at 8:41 pm

    Hello, I was diagnosed with IPF in June after having a cough that would not go away.  I am not on oxygen although my o2 drops to 89 with quick activity.  I started OFEV 2 weeks ago.  So far no side effects. The only issue I am having is eating at the right times to keep my meds 10-12 hrs apart. I am not sure how much food is enough to prevent side effects. I would like to have just a snack for breakfast but the instructions are for a full meal.  What are others eating for breakfast?

    My Doctor’s office at Cleveland Clinic and specialty pharmacy handled all the insurance issues for me.  The pharmacy told me my co pay would be picked up by the drug company since I had commercial insurance (BCBS) instead of medicare. I did not ask for help so be sure and check with the specialty pharmacy regarding copays. Hope this information helps.

    regards,

    Cindy Sears

    • mark-koziol

      Member
      July 16, 2019 at 11:49 am

      Hello Cindy, I see John has offered up some excellent suggestions to you for breakfast. With the OFEV everyone is different. You state you have been on OFEV for two weeks without any side effects. This is great news. When was on OFEV I would also eat a banana on most days along with yogurt. I would then eat a couple of hours later as I was trying to lose weight and was eating 5-6 small meals a day. I also made I had a protein with every meal. By the way I also go to the clinic and was transplanted there. Good luck and best wishes. Mark

  • john-l

    Member
    July 16, 2019 at 11:37 am

    Hi Cindy…welcome!  I have been on Ofev about 2 months now.  I struggled also trying to find the right food to eat when taking my Ofev.    I believe everyone is a little different but for me I try to eat something that will absorb the medication both in the morning & evening.  For breakfast, I can get by with an english muffin & hard boiled egg or a bowl of cereal with a banana.  See what works best for you as long as the food will absorb the meds.  Main thing I found is greasy & processed food upsets my stomach after I take the Ofev.  Good luck with your journey….I learned so much on this site from all of you.  Charlene & Mark have been very helpful….best regards,  John

    • mark-koziol

      Member
      July 16, 2019 at 11:50 am

      Hello John, thanks for offering the excellent suggestions and advice. Mark

  • anjolie1

    Member
    May 28, 2021 at 9:40 am

    I’m so glad to hear that you are tolerating OFEV well! I just received my first bottle yesterday. So far I haven’t taken any; just fearing the side affects I guess. I have to go to a family wedding this weekend so think I’ll wait til Monday when I can stay at home. I’m sure the bride will appreciate no puking in the pews! 🙂

  • pokerdave

    Member
    May 28, 2021 at 8:29 pm

    I just started three weeks ago and like linda i read about all the dire side effects. After six days and getting advice from my predecessors i jumped in.
    Very minimal side effects.
    A little humor: i kept reading about the explosive diarrhea and i work in public so i bought 24 adult diapers from amazon. Wonder if i should return.
    We have the experts on here and i soak it up and appreciate all the knowledge

  • bill-s

    Member
    June 2, 2021 at 11:15 am

    Hello All,

    I am also new to this disease and have completed my first course of 100 mg Ofev successfully with no side effects and normal liver test.  I am starting my first 150 mg course this week and so far so good. My Ofev is being covered by a Grant from BI, which I applied for.  Healthwell turned me down.  I have read in Ofev’s literature that its OK? to moderate your Ofev intake as necessary; stopping the 150’s and returning to the 100’s until side effects abate or quitting entirely for a period of time and then resuming.  I am also very interested and pursuing herbalists and Eastern medicine as well as the Wei Institute.  I am 75 and “healthy” and feel I have caught this disease at its onset. I have not investigated a transplant because of my age being a nonstarter. This string is incredibly helpful, and makes feel like I’m part of a team. Thanks everyone!

    • Charlene Marshall

      Member
      June 6, 2021 at 12:31 pm

      Hi Bill,

      Thanks so much for writing and I’m so glad to hear you’re managing with Ofev so far without many side effects, that is great news! I can’t share any personal experiences about Wei institute or other herbalists, but can share with you that I was one of the patients who have to go on/off Ofev several times before my body would tolerate it. I couldn’t handle the 150 mg 2x daily at first, so I went off it entirely, then back on at 100mg and tried 150 again. I couldn’t tolerate it a second time, so we did the same thing, to allow my body to correct the unpleasant side effects and have a break before trying again. We did a slower wean onto the 100 and then upto 150 again, and with a few additional tips from other patients, I was able to tolerate it. Hope that helps!
      Char.

  • harold-cheatham

    Member
    July 28, 2021 at 4:30 pm

    I am a 72 year old male diagnosed with Mild Pulmonary Fibrosis and Mild Emphysema 2 years ago.  I have started OFEV one week ago today.  Two 150mg per day. Happy to report that I had only one slight diarrhea event 30 minutes after taking my first pill after a large lunch. I was very concerned about the side effects that many folks have. Just thought I would post this to let anyone considering OFEV that I have had a good experience….so far.

  • ann-garner

    Member
    July 29, 2021 at 8:48 am

    I hope you continue to manage the Ofev without the awful diarrhoea.  My husband had been taking it ok for 9 months but now is getting the diarrhoea at some point every day or so.  He takes the Loperamide to help this side-effect but has lost a significant amount of weight and so his appetite has suffered.  Good luck with the medication.

  • harold-cheatham

    Member
    July 29, 2021 at 10:25 am

    I am wondering if other OFEV users have the side effects begin a few months after using the drug. I was expecting these issues to begin almost immediately and I was greatly relieved when they did not. I hope this is only temporary for your husband.

  • ida-anker

    Member
    July 29, 2021 at 4:01 pm

    Hi all, maybe this is a Q to be posted elsewhere, but just curious about rules regarding being on the transplant list abroad. In Norway you are off the list after the age of 65, and in order to be ON the list you have to be so sick that expected life time is less than 2 yrs. Sees to be different from country to country.

     

    BR Ida from Norway

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