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@ers12345
Cellcept is known to cause GI toxicity - upset stomach, diarrhea. This is in addition dizziness, lightheadedness, possibly palpitations and fatigue among other things. It may need to be taken on empty stomach, but if not tolerated, then taken with food to reduce GI reaction. You can google cellcept toxicity for a full list. Some people report staying on it for years without any issues. I had sensitivity from the start. Now I am on Myfortic, a similar drug with enteric coating for better tolerability.
It may not be pleasant staying on these medications, but they are helpful with various autoimmune conditions.
Regarding lifestyle changes, staying active in the bright sun may not be a good idea anymore, mainly because of your lung condition. Talk to your doctor about what factors may be aggravating your condition.
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@altabiznet Thank you so much for this. Yes, I am very aware of the potential side effects, but I need this medication to help clear up the inflammation in my lungs. At the moment, I am very stable and have no major symptoms, but I’ve had two flare-ups in the past three years. My last flare-up was in September, and I’ve been on steroids ever since. Prior to that, I was not taking steroids. After my first flare-up, I was treated with steroids and was able to come off them successfully — until now.
I can still feel some inflammation there, although it is manageable. However, it would obviously be much better if it were completely gone. My doctor does not want me to go through another flare-up out of concern that it could cause permanent damage to my lungs, and I completely agree with that approach.
We are hoping that CellCept will bring the inflammation down long term and allow me to come off steroids safely, as I cannot stay on steroids forever. At this stage, they still have not identified an autoimmune condition or found the exact cause of the inflammation. What we do know is that I respond very well to steroids, which suggests the inflammation is treatable.
I will most likely need to stay on CellCept for around 3–4 years. Possibly have a maintenance or just off medication- only time will tell depending on my LFT and CT scans. . I am praying I’ll be one of the lucky ones who gets through it with either minimal or no significant side effects.
Thank you again for all the information and support — I truly appreciate it and need all the support I can get.