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KATROACH1972
05-01-2009, 09:13 AM
I was put on Cellcept 2000mgs, and up my prednisone to 20mgs, for CNS Lupus. I cant start till UTI clears up and I have some other tests done, so there results wont be altered by Cellcept. Anyone else take this medicine for CNS, or anything else? If so can you give me your experience and advice? Thanks again every1 for your help! Hugs Kathy

tasha
05-02-2009, 08:58 AM
i'm on 2,500mg cellcept for my nephritis. before going on cellcept i had 1035mg of protein in my urine, now thanks to cellcept i only have about 500mg. the cellcept has drastically helped with the inflammation of my kidneys, so i am very thankful for it.

fortunately i never experienced some of the side effects of cellcept, like the diarrhea/vomiting that seems to be fairly common with it. my rheumatologist started me off slow though, first with 1,000mg, then we increased to 1,500mg after a few weeks, then to 2,000mg, and now finally to 2,500mg. the full dosage you can take is 3,000mg. hopefully i won't need to go any higher.

since it's an immunosuppressant, you have to be careful about getting sick. DO NOT hesitate to go to your general practitioner every time you catch something so you can get on antibiotics. i've been sick a couple times already since starting cellcept, which was more frequent than i've ever been sick before. the first time i didn't go to the doctor, and i ended up catching a secondary infection and got even worse. this time i went to the doctor and got on antibiotics. and he told me don't hesitate to come see him anymore. you have to be careful when you are on cellcept.

KATROACH1972
05-02-2009, 12:52 PM
Thanks Tasha! I have four kiddos so sickness kinda goes on alot in my house! I was worried about that. I hope its worth the risk?! Hugs Kathy:wideeyed:
i'm on 2,500mg cellcept for my nephritis. before going on cellcept i had 1035mg of protein in my urine, now thanks to cellcept i only have about 500mg. the cellcept has drastically helped with the inflammation of my kidneys, so i am very thankful for it.

fortunately i never experienced some of the side effects of cellcept, like the diarrhea/vomiting that seems to be fairly common with it. my rheumatologist started me off slow though, first with 1,000mg, then we increased to 1,500mg after a few weeks, then to 2,000mg, and now finally to 2,500mg. the full dosage you can take is 3,000mg. hopefully i won't need to go any higher.

since it's an immunosuppressant, you have to be careful about getting sick. DO NOT hesitate to go to your general practitioner every time you catch something so you can get on antibiotics. i've been sick a couple times already since starting cellcept, which was more frequent than i've ever been sick before. the first time i didn't go to the doctor, and i ended up catching a secondary infection and got even worse. this time i went to the doctor and got on antibiotics. and he told me don't hesitate to come see him anymore. you have to be careful when you are on cellcept.

tasha
05-03-2009, 09:09 AM
i do think it is worth the risk because cellcept is a pretty successful drug for treating lupus. just make sure you wash your hands a lot and take your vitamins. and don't overdo it if you do get sick. see the doctor and get lots of rest!

KATROACH1972
05-03-2009, 10:14 AM
Hi Tasha,
After reading the insert, it makes me leary! (sometimes i think those things are in there just to freak you out) lol!I was worried about the New FDA warning about the brain lesion disease. I already have two lesions of unknown orgin. So, it kinda spooked me. Also it said could be fatal if you have MS and right now, they have questioned my seronegative Lupus may be possible MS. I have a sister with Lupus , and one with MS. I will ask the neuro what he thinks after all my EEG,EMG,MRI. Thanks so much for your response.I am so glad its working so well for you! I hope it continues to improve your kidney function! Hugs Kathy

KATROACH1972
05-08-2009, 09:27 AM
I am scared to start Cellcept, I have to wait till my antibiotic resistant UTI clears up and after my esg, on esophugas, to break up scarring. I really had no signs of the uti, except little urgency. So I am scared I could get another infection that can spread without my knowledge. Plus, It said it could cause a disease in brain that causes plaques to form, and can be deadly. I already have two small spots on brain. Maybe I am just dumb! haha Sorry, everyone. Blessings hugs Kathy:wacko:

ButterflyRN
05-16-2009, 06:47 AM
I too am on cellcept for nephritis. I've been on it for about 4 years now. It is worth the risk to see if it works for you! As a nurse I will tell you one of the biggest things you can do is WASH YOUR HANDS!!!!! Depending on the ages of your little ones if they too wash their hands and cover their mouths when they cough (cough/sneeze into the crease of the elblow not the hands) can help reduce the spread of infection. Also if you have sick little one in the house you can always see about getting some sugical masks to wear when around them and make sure you are disinfecting things.

The doctor will have to work with you to see too how much of the cellcept you can tolerate. I can't take the full 3000mg because it makes my white count drop too much. I am currently on 1500mg. THey have been trying to reduce my amount.

Also the packet inserts are not really for the lay person. They are for us medical people to have all the knowledge "in case" a patient presents with these symptoms. Unfortunately due to our society we have to give every piece of information so others are not sued! Don't let these inserts shy you away from trying. Make your list of questions and ask your doctor!

I wish you luck and let us know if you start taking the cellcept!

froggal
05-20-2009, 12:46 AM
I also take it for nephritis. I to only take a small dose~ 1,000 mgs. Dont be nervous, because if it does work for you, eventually the good out weighs the bad. Getting used to it is definately not fun though!

Tootles
05-24-2009, 11:12 AM
Hello! I am also on cellcept. I currently take 1500 mg. When I went up to 2000 mg I would get an instant migraine. I still get alot of headaches on the 1500 mg. Good luck with your decision!

KATROACH1972
05-24-2009, 03:09 PM
Thanks for your response. I was taking it for CNS, and now its stop attacking that and is on my connective tissue in rib cage, and kidneys I think now! FUN FUN! lol gotta laff! I am on 2000mgs Cellcept, and 60mg of prednisone. I know about migraines, have you kept eye on your Blood pressure? i had migraine a year and half, strait b4 they checked my bp! it was like 170/110! No wonder had dang migraine! LOL Kathy

Tootles
05-24-2009, 05:23 PM
Hello Kathy,

Thank you for the suggestion of checking my blood pressure. I do have that checked often and that is the only number that is "normal" for me. I am hoping that they will get to reduce the cellcept someday. Good luck with the predisone. This past summer I was on a 110 mg for about 2 months and that was not fun!

Take care~ Deb

mnjodette
05-25-2009, 09:44 AM
I'm on cellcept for other lupus symptoms - just 1,000mg. I've been on it for about 2 years, I think, with no side effects. I know higher doses have greater risk, but generally it's a pretty well accepted and successful drug for lupus. If I remember right, prenancy while on cellcept isn't recommended, so women usually have to get off it before they get pregnant. By the way, generic versions of cellcept were just approved by the FDA and they started shipping them earlier this month. Be sure to ask your pharmacist about that next time you refill your prescription. That'll save everyone a LOT of money since it's been crazy expensive.

Jody

KATROACH1972
05-25-2009, 11:25 AM
Thanks my friends! I will ask about generic. Have a great day