May 14, 2020 at 4:21 pm #24355JonParticipant
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 4 months, 1 week ago by Charlene Marshall. Reason: formatting
May 16, 2020 at 11:12 am #24395
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.
May 16, 2020 at 11:29 am #24396CynthiaParticipant
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.
May 16, 2020 at 11:47 am #24398
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.
May 16, 2020 at 1:27 pm #24400Wendy DirksParticipant
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
August 21, 2020 at 5:44 am #25325Wendy DirksParticipant
Hello again, Jon! I’m now starting to take MMF (Cellcept) and rather than increasing the dosage every month, I am increasing it every week. I’m at the end of week 2, now taking 1000mg, 1500 next month, and then stabilise on 2000mg daily if my white blood cell count remains at appropriate levels. I wasn’t aware that it was expected to increase FVC – from what I’ve been told it stops the decline in lung function by slowing the progression; decreasing inflammation leading to scarring. My consultant told me that it would not make me feel better. I’m not sure what that means in terms of lung function tests. Maybe someone else does.
I found this online: “MMF treatment was associated with potentially clinically important trends toward reduced annual FVC decline (similar to approved antifibrotics), greater FVC stability and improved overall survival in IPF patients. MMF was generally safe, well tolerated, and relatively inexpensive.” (https://pubmed.ncbi.nlm.nih.gov/28441449/)
It seems to suggest that it stops the decline rather than causing it to increase.
August 25, 2020 at 6:21 pm #25358conniParticipant
I have been diagnosed with HP also and could not take cellcept or imuran. I have been on Ofev with minimal side effectsand the green tea extract., and am hopeful that the studies are correct and it slows the progression. I live in Florida, today the heat index was 110 degrees and we have really high humidity. I could only be outside for about 10 minutes because of the weather and pollens..ugh:(
I do get accupuncture and take chinese herbs,and practice breathing exercise, and have been doing that for 4 years.
I would suggest doing lots of boring research since this disease is not well researched like COPD.
Hang in there!
September 2, 2020 at 5:28 pm #25470
Thanks so much for writing – nice to see you on here! Really glad to hear the Ofev side effects are minimal and that you’re able to tolerate them so well. The pollen and that humidity in Florida must have been so tough on you, I hope you have good AC and filtration in your home. You hang in there too and thanks for sharing! Keep in touch 🙂
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