Just wondering if anyone has been treated with CellCept for their lupus and if so, what the outcome has been - either good or bad. Would also be interested in what kind of side effects, if any, have been experienced.
I've had failed attempts at a couple of different lupus meds and a friend of mine mentioned CellCept (he takes it for an MS-like illness). He sent me some information and an article about it being used for lupus that has failed other treatments options (or lupus related nephritis) - however, I'd really like to hear about "real" people's experience with it, rather than just "medical mumbo jumbo".
Any information, positive or negative, would be greatly appreciated. Thanks!
I have systemic lupus, reynaud's, sjogrens, nodular thyroiditis, and vasculitis. I have been on Cellcept for 4 years. I think I would be much worse if I weren't taking it.
It "turns off" the immune system which slows down the body's attacks on itself. I still have some vascular issues, but no more joint pain and inflammation, no more severe fibromyalgia and I can function a bit more normally than before Cellcept.
It does have side effects, but I started on a very low dose and slowly built up to my current dosage. For me, the side effects of the Cellcept aren't nearly as bad as the symptoms of lupus.
The biggest caution with Cellcept is the risk of infection due to the drug's effect on the immune system. I don't gather in groups of people, I don't go to any stores, malls, grocery stores, restaurants, etc. I am very careful about avoiding any exposure to people who are ill and I use a lot of disinfectant and antibacterial products in my surroundings.
This drug is contraindicated with some mineral and vitamin supplements and some other medications, so follow your physician's instructions and do your homework on Cellcept.
Good luck and God bless!
Thank you so much for the information! I've got systemic lupus, probable sjogrens (have pretty much all the symptoms but haven't been tested yet as I'm in the process of finding a new rheumy because my old one stopped taking my insurance), severe fibromyalgia, severe arthritis, asthma and have had vasculitis and cellulitis in the past.
One reason my friend suggested/mentioned the CellCept to me is because not only have I had failed attempts at other lupus meds, but I also find that prednisone does help a good deal with my symptoms, but of course, the long term side effects of being on prednisone are horrible. I know all medications have their side effects and potential for problems, but it definitely sounds like the CellCept's "problems" would be better than what the prednisone's are. And if it would also help with my fibro and arthritis, well that would definitely be an added benefit - and as you say, I think whateer side effects there are would be better than the symptoms I'm experiencing (and that are getting worse)
The risk of infection wouldn't really be a new one for me, as that is also a big risk with prednisone, especially when taken for long periods of time or at high doses. So, like you, I'm pretty much already used to avoiding crowded places, especially during cold and flu season and avoiding anyone who is showing any signs of being sick. And of course, lots and lots of hand washing and disinfecting.
Again, I thank you for the great information you've provided. I feel much more confident now about speaking with my primary care physician who is taking care of my lupus, etc., until I can get in to see the new rheumy (unfortunately won't be until October) - and then also speaking with the rheumy about it.
I'm glad to hear that it has been so beneficial to you and hope that continues.
I have have Lupus (SLE), too and been taking Cellcept since 2000 or so. I will probably be on it all my life now and that is good. Since no joint pain has really bothered since the late 1990s. I think my doctor was one of the first to experiment with Cellcept in regard to lupus kidney behaviors. Wouldn't go back.
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