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My Daughter just started Cellcept (about a month ago) She started on 500 mg twice a day. She went to her doctor and he wants her to take 2000mg a day. He is hoping that she will be able to come down on her steroids and also control her flares.... She did have a seizure a month ago, and they have not found any reason yet for the seizure ( but she is taking keppra now just in case) they have done MIR,CT,Xrays, EEG. they are going to do two more test also. But my question is on the cellcept how long before she can tell if it is working. and what will it help with. ( I already think its helping with the lupus fog..) but will it help with other problems she has? Thank you very much for your help. Christy's mom Angie:p
 

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Hi Angie,

I started noticing some improvement after 4 weeks. The decrease in joint pain and numbness were the first signs for me. I was able to decrease the prednisone for a short period of time.

Later on during my treatment I wasn't sure Cell Cept was still doing anything for me. I found out the hard way when I had to go off treatment for a short time due to a cold. It didn't take long for me to flare. I was more than happy to continue with it after that experience.

I hope Christy sees some improvement with the higher dosage.

Take care,
Lazylegs
 

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Hi there,

I do not have any personal experience with cellcept but wanted to let you know your daughter and yourself are in my prayers tonight.

I hope this increase in meds does the trick and the last couple of tests they run turn out ok.

Gentle hugs to your daughter.:wink2:

I think your an awesome mom!!!;)
 

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Hi:

I have been taking 2000mg a day for about a 10 months...I started at 500 then went to 1000. After about 6 weeks I started to really feel better. After about 9 months at 1000 I had a really bad flare and they gave me steroids to get me through and upped the cell cept to 2000mg a day.

It really helps with the pains and brain fog almost all the time. I have just been DX with kidney involvement and my nephrologist said that if I hadn't been on this dose I would be in reallyt bad shape!

Hope your daughter starts to feel the benefits really soon - Stephanie
 

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hi I really hope your daughter gets more her self soon, i also strarted on cellcept in january, i am now on 2000mg daily but still on 10mg prednislone

Also i am on keppra, as i have epilepsy due to lupus,dx last year . been on a few different meds but keppra fingers crossed,,, seems to be working more for me fingers crossed.

Now todayis the first day in a long long time i have felt more me if that makes sense, So hoping your daugher will soon too


take care Lin xxxxxxxxxx
 

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I am on 3000mg a day and have been for roughly a year and a half. it has been a god send to me. i have MCTD and my major disease is scleroderma but my Lupus has been at bay for the whole time. I sincerely believe that it has helped my SLE too as it has helped the SD. Good luck to your daughter and BTW, i have had no side effects from it at all and it took me about 3 months to see the real help from it and it maxed out the improvement I saw after about 6 months.
 

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Hello,

I am on a daily dose of 2000 mg, in addition to 10mg, pred.

For me, my hair grew back, headaches were not as severe. Less fatigued, in general.

The benefits probably vary from person to person.

I want to wish your daughter the very best. :)

Love,
Sandy
 
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