STOPPING TAKING CELLCEPT!

Jenrox:

Sorry to hear that the Cellcept is making you ill. Lynnwood, made a good suggestion to you and I agree with her. You need to let your Rheumy that the medication is making you sick. Your Dr needs to know about your side effects so that they can make the nausea better.

I totally understand the nausea bit, I take a very high injectable dose of Methotrexate and it makes me sick to my stomach. It's a chemotherapy drug that some breast cancer patients use. If you can get a prescription for your side effects, you may begin to feel better that would be great. Many folks on here have responded well to the drug. If you can't take it there are others out there though.

The other drugs out there for lupus varies from person to person. I've taken every medication out there to treat lupus and RA, except for gold injections. None of them worked for me, my best working drug is prednisone and at fairly high doses. I've been on the stuff for over 12 years now. However, I have ALL the terrible side effects from the steroids, my latest issues is my osteoporosis is so bad I'm breaking my ribs by just twisting the wrong way, or the cat standing on my ribs while I'm sleeping. I couldn't take Imuran as it caused me to get meningitis that made me really sick. The Cellcept didn't do anything, and the MTX kinda eases some of the joint pain, but my lungs and heart still haven't improved in years.

So put a quick call into your Dr and let them know how bad off you are, and if they don't know about your They may be able to get a social worker to help you get some help with your child when you're in a bad flare up. Stress is a huge factor in lupus and how we feel. The more stress we have the sicker we become. Also, please be careful about being out in the sunshine. I know you have your hands really full, but also try to get as much rest as possible.

Again, welcome to the forum and feel free to ask any questions you need answered. There's always someone around to answer questions. Good luck and I hope you begin to feel better really soon.

Hugs,
Barbara

I didn't take my cellcept for a while (and it was only 4 tablets a day). I didn't think it was a big deal either but my doctors somehow knew I wasn't taking them based on my lab results. Long story short I had a big kidney scare and had to be put on an extremely high dose of prednisone. If the high amounts of prednisone didn't work and my kidneys continued to get worse I would have to start dialysis. I was on a low dose of pred so all my progress went to waste and on top of that I got the usual side effects like moonface and weight gain which I absoultely HATE more than lupus itself. I regret it SO BAD. I'm still trying to get rid of this moonface.

Plus before I started cellcept I was taking chemo (cytoxan). Now THAT makes your hair fall out big time. Also increases your risk of getting cancer and having children. I'll happily stick to my cellcept :)

Unless cellcept is hurting you personally please don't stop it.
My brother has severe kidney disease and has been on dyalisis for 10 years now. Kidney disease is no fun and is a terrible thing.
When he first had kidney failure it put him in ICU for over a week in horrible pain. We never knew if he would live or die. It put our family in such agony over his illness. His children was so terrified over his illness.