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    • #21968
      Cynthia
      Participant

      Now that Ofev has received approval for several forms of autoimmune-related pulmonary fibrosis, many patients are starting to take it in addition to the mycophenolate (Cellcept) they had already been taking. My pulmonologist thinks Ofev will be available to me relatively soon. I’m a little concerned about taking two such strong drugs, but the clinical trials have been very encouraging apparently. I’m 72 and I’ve been on Cellcept for three months with few side effects. Has anyone started taking both drugs? Any issues?

    • #21997

      Hi Cynthia,

      Nice to hear from you and really good question! I’m not aware of any concerns with and/or the effectiveness of taking both Cellcept and Ofev, but I do know of a few patients on the forum who is on both. The etiology of the drugs are very different from what I understand (keeping in mind, a non-medical mind is saying this) as one is an anti-fibrotic and one is an immune-suppressant, so I can’t imagine there being a problem with taking both as their purposes are so different. That said, I can’t be certain and would welcome anyone’s experience or physicians thoughts on this if they’ve had a discussion about it. Please let us know!

      See if you can chat with your physician about this too Cynthia and let us know what he/she says. Really good topic and clarification to obtain.

      Charlene.

    • #22006
      Dan Hughes
      Participant

      I am 59, I have been taking Mycophenolate 3,000mg (1500 x 2 day), four months ago I was started on Ofev 150mg(2x day, at least 10hrs apart), in addition to Mycophenolate .  So far no bad side effects from either medication.

      Mycophenolate, lowers your immune system, and it helps suppress the fibrosis.  Using this you have to be careful with cleanliness, colds, children, etc.

      With the Ofev, they should provide training, the most important thing is to eat a full high protein meal before taking it, or you will get diahreha.

      • #22010
        Cynthia
        Participant

        Thanks. I was on Ofev for a month before my diagnosis changed to autoimmune. I didn’t have any serious side effects, although my appetite and sense of taste seemed off. I think if I’m offered both I’ll do it.

    • #22009
      Mark Koziol
      Participant

      Hello Dan, thank you for telling us about your experience with these two medicines. Your input is valued by the members and me.  Mark

    • #22011
      Jan Kowalke
      Participant

      I have scleroderma and I am part of the study using OFEV for my ILD.  I have also been on cell cept for about 10 years. The main side effect of adding OFEV is nausea and diarrhea. My OFEV dosage was reduced to 100 mg 2x a day. This change ended those symptoms as long as I ate something with the OFEV.

    • #22012
      Mark Koziol
      Participant

      Hello Cynthia and Jan, thank you both for your input on your experience with ofev and cellcept. Mark

    • #22043
      Dan Hughes
      Participant

      I forgot to add.

      I have been on Mycophenolate since 2017.  At my first appointment at INOVA ALD CLINIC they conducted a blood test for Scleroderma (SCL-70) test, proved positive.

      in the spring of 2019 same test was negative, possibly pushed down by the Mycophenolate, and diagnosis changed to IPF and Ofev was added to my medications.  So my diagnosis went the opposite way of yours.

      i am now undergoing the testing for a bi-lateral lung transplant.

      • #22048
        Mark Koziol
        Participant

        Hello Dan, wishing you good luck in your pursuit of a transplant. My best advice would be to stay compliant throughout the process. Do not miss a sched appointment, do your pulmonary rehab, make sure you are weight they are requesting. Basically follow their orders because many potential transplant patients are denied for non compliance. Best wishes, Mark.

    • #27390
      Diane Welmon
      Participant

      @cynthia-comery-ferguson

      Thank you so much for this question. I am on both. PF and autoimmune. I have been having issues with diarrhea and constipation back to back. Don’t like to use imodium but find I have too. Then I worry about constipation (use dulcolax) and the cycle repeats itself.

    • #29435
      John M
      Participant

      I was diagnosed with ILD in spring of 2011 and started on Cell Cept 1000 mg twice a day. I have had Rheumatoid Arthritis since 1987 and was on Methotrexate and Enbrel for a number of years. These two drugs were a game changer for me as I was able to play golf, ski and lead a pretty normal life. When the IPF diagnosis came I was taken off Methotrexate. My RA continued to remain stable and my PFT’s weren’t too bad. DLCO’s in the low 20s. Gradually, my DLCOs started to drop into the high teens and finally to 10.7 in Nov 2019. My Dr. had prescribed 2L OX2 but I didn’t fill that RX at that time. A month later, I was admitted to the hospital with they think was PCP Pneumonia. (Not sure as I guess it is hard to tell without biopsy and they didn’t want to do that). After 11 days of  high flow O2, I came home.  It was at this time that I started using 2L O2 at night. Three months later I again had trouble breathing and went to the ER. Primarily because of the Covid hysteria they immediately put me in the hospital but this time in Isolation. After 5 days of waiting for the Covid test results, I was released with diagnosis of Rhinovirus.  My May 2020 PFT showed a decline in DLCO 9.7

      Luckily for me, the approval for the use of OFEV to treat RA-induced IPF came about in March and I was started on OFEV 150mg twice a day. For the first couple of months no symptoms but gradually I stated experiencing continuous diarrhea. To combat that, I started taking Imodium which helped but then caused me to sometimes have constipation.  I tried combating that with Senocote which really confused my digestive system and made me miserable and bloated most of the time. This when I read on this forum that some people stop for a few days to get things back to normal.  I have done that twice in the last few months (with Dr approval) and it has reset my system quite well. The reset seems to last about 2-3 months till things get out of balance again. My last PFT in July showed a 10% improvement so I don’t want stop or reduce the OFEV, at least now right away.  Sorry for the long post but thought it necessary to give my background to anyone looking to analyze my experience with OFEV.  John

    • #29436
      John M
      Participant

      I forgot to check the reply Box. Can someone fix that for me so I can know if someone replies to my post.  Tks  John

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