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Asking because I was on 1,000mg in morning and 500mg at night. My Dr wants me to reduce the dose to 500mg in morning and 500 at night. All my labs have been really improving but my white count still is staying in the same range and he thinks it is due to the cellcept, so that's why he wants to reduce. Anyone else have this issue? I have been taking cellcept for a few years now.
Answer Summary
Members discussed their CellCept doses in response to a question about reducing dosage due to low white blood cell counts, with doses ranging... Read more
Deezy and @A MyLupusTeam Member, I'm on Cellcept 750 in the morning and 500 mg in the evening. Is it your total WBC count that's low or just the lymphocytes? If it's just the lymphocytes, it's possible that lupus-related anti-lymphocyte antibodies are causing it, as I've been informed by two very knowledgeable and respected rheumatologists.
Unfortunately, the anti-lymphocyte antibody test is not available in the U.S., only in Germany. Those of us with lupus nephritis are more prone to having this antibody. So it's tricky knowing whether the disease or the treatment is the problem, and we just have to take the dose that controls the kidney and other organ disease and deal with it.
I hope you see improvement in your counts with the reduced dose, Deezy. I hope we immunocompromised lupies continue to protect ourselves by masking in public as much as possible.
Please keep us posted!
@A MyLupusTeam Member. My WBC dropped to 2.0 when it was bumped to the dose I am on now. My lymphocyes were low normal. When I went to myfortic 360 in the am and pm my WBC went to 4.0 and lymphocyes was normal. I was extremely cold and with low blood sugar and I stopped it briefly and went back on it at 360 2x a day and my blood sugars went back to low normal and I got warm again. Now on 700 in am and 300 in the pm and back cold again but my sugars are good (I am eating protein cookies every day). I have to exercise to warm up and that stops me from flaring. I flare when I am cold. It also boosts my immune system. My Rheumy told me I walk a tight rope and I do. Any change is significant as my Reynards is more pronounced in the morning as I wake up cold and in pain so my hands are numb and feet. I wear a hat and3 face masks because if any part of me gets cold I flare. I have dry mouth and eyes. But the eyes are getting much better. Its just the mouth. So I keep my mouth covered all the time. Just when I felt my strength coming back I go back to square 1. Not weak as a kitten but more like a lamb. If I could take any of this away from me it would be the dry mouth. I can take the exhaustion and the pain. I can deal with that. This dry mouth never goes away. If I leave my mouth uncovered to talk and it drys up I feel it in my teeth at night. Its so much worse for me because I live in a food scacity. Fennel seed does help the most and coocnut butter and drinking lots of water but I cannot not let my mouth dry out. I need to go to the dentist and can't because my cleaning was so painful the last time. Nothing helps. It won't go away. I can't use any of the over the counter remedies for dry mouth or the prescription as it has alcohol or sugar additive that makes me flare. This dry mouth is the worst.
I just got prescribed this medication and I’m kind of iffy with it , I completed the month with it but I backed out because of the side effects, honestly not sure why I got prescribed this medication. What was the reason for it?
Thanks for the information @A MyLupusTeam Member.
@A MyLupusTeam Member It is the WBC count, fortunately the lymphocytes are okay. I am also on another treatment so I do feel OK with the decision of going down on the dose knowing I have that as well. It is my nephrologist that suggested this and I trust him he has been a lot of help ever since I have been seeing him. I will keep you posted. I hope you are doing well! 💜
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