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    • #24355
      Jon
      Participant

      Hello, I am 40 years old male. I have been recently diagnosed with hypersensitivity pneumonitis. My recent FVC was only 37% and I was put on Cellcept 1000mg, prednisone 30mg last month and recently started 2000mg, 20mg this month and will go up to 3000mg, 10mg next month. I read that Cellcept takes some time to show some benefit however does anyone know any general guideline or rule in terms of how long it can take to improve FVC 37% to may be 60% or 70%? I understand it may vary person to person depending on many other conditions however I am not sure if I should target 3 month, 6 month, 1 year or even longer. I would appreciate if someone can share their experience or knowledge to answer this question.

      • This topic was modified 2 weeks, 3 days ago by Charlene Marshall. Reason: formatting
    • #24395

      @mantra

      Hi Jon,

      Thanks so much for writing to us, though sorry to hear of your HP diagnosis. We do have a few members who have this diagnosis as well, and who (if memory serves) are on Cellcept as well. I’ve tagged them below to see if there is any information they can share with you that would be helpful. Unfortunately, I don’t have too much to share from personal experience, so hopefully these wonderful members can help you.


      @wendy-dirks


      @tmoriarty


      @cynthia-comery-ferguson

    • #24396
      Cynthia
      Participant

      Hi Charlene. I’m on Cellcept but my diagnosis isn’t HP. It’s PF caused by an autoimmune disorder — dermatomyositis. I started the Cellcept (I’m now at 3,000 mg) and Prednisone last fall and saw some improvement in oxygen levels and breathing tests after about four months. In the past week, however, I noticed a drop in my O2 levels. I’ve tapered down to 5 mg Prednisone in the past month and I’m wondering if it might be that. Or possibly it’s all the pollen in the air. Does anyone have more trouble breathing during this season? I was going to get a CT scan and breathing test in June but my pulmonologist has moved them up to Monday. I’m nervous about getting them done in the middle of this pandemic, but I really am anxious to see if there’s been any decline. If there is, I want to talk with him about Retuxin infusions, which many have felt made a huge difference. My rheumatologist is nervous about doing those during the pandemic because they will further suppress my immune system. In answer to the original question about Cellcept, my doctor said it takes three months to kick in.

    • #24398

      Hi Cynthia,

      Thanks so much for writing so quickly, and providing us with that clarification. I seemed to remember you had experience with Cellcept so I was hoping you may be able to provide Jon with some insight. I have heard a lot of people having breathing difficulties with various environmental issues this time of year, ie. sand, pollen, etc. I wonder if this might be the cause in your 02 reduction? I hope your tests on Monday go well, and I understand about being nervous with the pandemic…. hopefully the centre has lots of measures in place to protect patients, through PPE, physical distancing and frequent washing of surfaces. If you think of it and are comfortable, please let us know how they go. I’ll be thinking of you!

      Thanks again for writing to us about the Cellcept and it taking three months to kick in. I would imagine this to be helpful to Jon.
      Take care,
      Charlene.

    • #24400
      Wendy Dirks
      Participant

      Hi, Jon – I also have chronic HP but I am not yet taking Cellcept. I was due to have a CT scan and complete lung function tests last month to determine if I was now a candidate but because of the pandemic, the appointments have been postponed indefinitely. I live in England and here everyone who is considered extremely vulnerable to Covid-19 is being “shielded” at home until the end of June. I wish I could help. Best wishes, Wendy

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