Has anyone experience of coming off mycophenolate? Since March I have been reducing from 2000mg slowly and now have just come off it completely. I'm really not feeling well, so tired, muscles hurt, constant headaches. I have several other diagnoses apart from vasculitis most recently an autonomic neuropathy/POTS which is thought to have another cause from an auto immune basis. Its hard to work out sometimes what is causing my symptoms but I have definitely been feeling worse after stopping mycophenolate. My specialist thinks my vasculitis is under control but has left me on 5mg prednisolone and hydroxichloroquine as a safeguard but wanted me off mycophenolate.
I just wondered if anyone else has experience of this, do you get withdrawal symptoms like prednisolone? Does it just take time to adjust ?