I was on Cell Cept for a month and had problems getting it refilled and have now been off of it for almost 2 months. I feel much better and am having little pain. I have been on Weight Watchers and lost 18 lbs, so I know that has helped too. I got my Cellcept in the mail and am hesitant to start back on it since I am feeling decent. I am not having major pain or headaches since stopping it.
My doc believes in pretreating prevention. That means, although I am doing well, take meds to keep the Lupus from getting any worse. I don't know if I agree with this if I am in remission. He also does not believe in remission or fibromyalgia (also diagnosed with and taking Gabapentin). The new dose is an increase and due to all the side effects listed, I am scared of this medicine. Any thoughts on the matter? I do continue to have fatigue problems, and some difficulty walking (knee surgery 5 years ago).
I have been on Cellcept for almost a year now and it has helped me tremendously. I did recently have a discussion with my neurologist and rheumy about Cellcept and the dangers of it. These drugs are prescribed when they are needed and dosages are kept at a minimum because of the seriousness of the drug. If a doctor feels you need it there is good reason. My rheumy told me the reason he sees me every month and does a full exam with bloodwork is because he is checking me for the affects of the drug. I believe it is not a maintenance drug, but one to help get me better and than something different after that. Originally he thought I would be on it for a little over a year. I do know it causes a lot of stomach issues for me, but I need it so I have to put up with it. If you have any questions about it let me know. I take 3 500 mg a day. The higher the dose the worse my stomach gets. Let me know what you decide.
Thank you so much Reddog for your reply. I just do not feel I am bad enough to need this at this time. However, I have not responded well to anything he has given me so far. The Rheumy is trying to keep me off Predisone due to the weight issue. I really do not need to gain any more weight or I will not be able to get around. I have an appointment 11/30 and will have blood work and discuss further with him. Again, thanks!
I know these drugs are scary but so are the damaging results of this disease. Maybe you should try it until you see him so that you will see how your bloodwork turns out. My doc watches my bloodwork because he said it can do something(?) to the white blood cells, just a thought unless you would rather wait until you discuss it with him and get all your questions answered. Either way I do understand trying to find an alternative to prednisone, that is not a good choice long term. Maybe if your dosage of cellcept is lower you wouldn't have to be as concerned about it? Just another thought. Good luck with whatever you decide. Keep me informed.