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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.

      • This reply was modified 1 month, 3 weeks ago by Charlene Marshall. Reason: formatting to remove code
      • This reply was modified 1 month, 3 weeks ago by Charlene Marshall. Reason: tagging
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