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Hi Everyone, I have been on Cellcept since Augest. Started at 1000mgs. a day then 2000 and now, because my stomach could'nt tolerate 2000,it has been lowered to 1500. I take one 500 in the morning, 1 hour before eating and 1000 at night, 2 hours after eating. (also take Previcid). Was on imurane,but it caused liver enzymes to rise. I am having severe "night sweats" and tingling in my hands. Has anyone else experienced this. Also, what improvements should I be seeing, if any at this time? Such as less fatique, joint pain,less shortness of breathe(40% loss of lung function due to SLE)Because I am not seeing any change, should I be grateful for not having more problems? I get so frustrated each time I begin a new med. Keep hoping this will be the magic one! . I do not see my Rhumy till first of June, after lung x-rays and capacity tests. I will have a list of questions for him. Till then, any input or advice would be appreciated.

Thank You, Rosie
 

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Hi:

I am sorry i don't think I can offer much...I take 2000mg of Cellcept a day. The only problems I ever had was nausea if I took it with food or too close to food. I would suggest if the issues become more than just an inconvenience or you continue to be concerned about the impacts that you call your Dr and not wait for June....

I saw an improvement in joint/muscle pain, however not an elimination of these pains. It does nothing for the fatigue, and to this day I hevn't found anytrhing but steroids that help me over that one (not worth the side effects and my dr wouldn't allow).

I was started on it due to issues with Kidneys...they still break through and act cranky, but better with than without.

I get night sweats and tingling hands but I got that before the cellcept so I do not believe that they are related...

Sorry - Stephanie
 

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im sorry your gettinmg probs on it, ive only just gone up to the 1000 twice a day, do get tummy pains though, azathioprine was ok for me just wasnt doing anything doc said any more,so thatswhy the change......

i hope things go right for you sending you a hug Lin xxxxxxxxxxx
 

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Hi Rosie,

Since you started in August you should already be seeing some improvements. If memory serves me right it begins to take hold around 4 to 6 weeks. I agree with Stephanie you may need to see your rheumy sooner if you are feeling so poorly.

Take care,
Lazylegs
 

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Jyneal
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Hello Rosie,

I took 2000mg of cellcept for almost 2 years. I did have night sweats and tingling in my hands. However I also took prednisone with the cellcept. The goal was to reduce the prednisone and replace with the cellcept, but things turned up. I am not taking the cellcept right now, becuase I am doing cytoxan treatments and you can't do both at the same time. Once the cytoxan treatments are finished I will be taking them again.

Do you have any relief at all since taking the cellcept. I did not have any for several months. I started mine in December and didn't find relief until June. So I am thinking you should be seeing something by now.

I did want to say I do not have any night sweats since I stopped taking the Cellcept this past January. I still have tingling in feet and hands, my doctor thinks that is part of the vasculitis I have.

Good luck with your treatment
Jyneal
 

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Hi Rosie,

My apologies, for not responding to your post sooner.

I also take 2000 of Cellcept daily. I have cns lupus. I can say while the Cellcept has preserved my life, I still feel very ill, even though I take it, pred, plaquenil..and a myriad of other meds.

I guess, what I am trying to say is..for some of us, while the meds sustain our lives, we will never be well. I am not qualified to say this is the case with you, but for some of us with lupus, it is a reality.

I hope, you are able to enjoy little slices of feeling better. :)

I know, for me this is a reality.

Love,
Sandy
 

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Discussion Starter #8
To Jyneal and Sandy, Thank you for responding. Jyneal, I was born 40 miles north of Pittsburg, so hello to a fellow Pennsylvanian! I believe I began this journey with SLE 20 years before I was diagnosed. I was dx. at 48 and the first 6 years after were doable, but then I could no longer teach and had to go on disability. I reached the point that physically and emotionally I bottomed out. You are right Sandy, the meds. do sustain us, but my quality of life is tough. I managed until the Lupus went into my lungs and now taking a shower is exhausting.
I'm going to try to ride this out till June. I know my Rhumy will want Lung tests before he decides about the Cellcept. At least I know others have the tingling and night sweats.
Sending you both Good Wishes, Rosie
 
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