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? about cellcept

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Posted 7/17/2008 10:57 PM (GMT 0)
Just started it and have questions. How fast did people see results with it? did you have to build up to a certain amount? How long were you on it? 
Posted 7/18/2008 1:37 PM (GMT 0)
Hi JessieRose. I started CellCept Jan 15, 2008 for severe cognitive disfunction that included confusion, stuttering, and double vision. I tapered up to 1000mg twice a day which is my current dose. I noticed an improvement about 4 weeks after I started taking CellCept and I continued to improve. I've been taking it 6 months. I still have some symptoms, but I'm much better than I was. I hope it works for you! Love, Butterflake. 

Posted 7/20/2008 6:19 AM (GMT 0)
hey there I have been cellcept for over a year now and it has been a really great medicine for me. i take 1250 mgs of cellcept twice a day and I dont think I have had any adverse side effects....it has allowed me to taper on my prednisone so i am very thankful for that...
I dont know if it is the cellcept because I take lots of other medications as well but when I wake up i need to eat something otherwise i will feel sick and nauseous...i know you are supposed to take cellcept on an empty stomach but i dont think i can.
I also seem to have some kind of irritable bowel or a very sensitive bowel which is kind of annoying but im not sure exactly what the cause is...
let me know how it works for you!
Posted 7/20/2008 6:21 AM (GMT 0)
i forgot to answer your questions! I just started on the dose I am, no need to taper up or anything...when I have some symptoms of a cold or something my doctor usually has me stop taking the cellcept for about a week so that my body has a little bit of a chance fighting off the virus....
i think cellcept can take several months to finally start seeing results in bloodwork etc but i think it is worth the wait and it has done a lot for me.
Posted 7/20/2008 1:18 PM (GMT 0)
How long have you been on it? Do/did you have kidney problems is that why they put you on it? or just your blood work was crazy.

Posted 7/21/2008 4:56 PM (GMT 0)
I have been on CellCept for about 2 yrs now. I started low and worked my way up to 2000mg twice a day. At the time, I was seeing Drs monthly, and saw a slight improvement at the first appt after I started it. My kidney function is now almost completely back to normal. I hope it works as well for you as it did for me. Good luck!

Posted 7/21/2008 7:14 PM (GMT 0)
That is good to hear, I will be on 2000mg in a couple of days. did/do you have any side effects from it?
Posted 7/21/2008 7:37 PM (GMT 0)
I was on 3000 mg daily (1500 am & pm) for just over a year -- ramped up to that amount and then ramped down at the end of the course of treatment. I never had any side effects at all with any dosage. The Cellcept helped immensely with my cognitive dysfunction -- I consider it my miracle drug. Hope you have good results,
Posted 7/21/2008 9:21 PM (GMT 0)
thank you for all the replies. what did you have for cognitive issues
Posted 8/2/2008 1:06 AM (GMT 0)
Jessie Rose,
I did not have any signs of a kidney problem but my Rheum. Rxd CellCept. I was on CellCept for 1 month at 1000mg then went to 2000mgs. The second week on the higher dosage I broke out in hives (which I have never done for anything before) so they took me off it for 1 week and then to go back at 1000mgs.
When I went back @ 1000 I felt nausious and had congestion and my sinus' hurt. So I am off it all together. I just take 400 of the Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium.
Hope you find good results with the CellCept, you never know if you don't give it a try.

Carol
Posted 8/2/2008 11:20 PM (GMT 0)
I have been on it now for about two weeks,and I feel awesome I also had to increase the predisone to so it could just be that.. But I havent felt this good in a while. 

Posted 8/3/2008 12:25 AM (GMT 0)

Jessie,

     Glad to hear that you are doing so good.  I took it for renal involvement and it didn't help.  I also had extreme diarrhea and nausea.  I lost alot of weight.  My nephrologist says alot of people are having extreme success with it.  I hope you continue to do really good.  Why did you go up on the prednisone?  Cellcept is suppose to enable you to lower it.  God Bless You, Judy

Posted 8/3/2008 1:41 AM (GMT 0)
I was in the process of decreasing the predisone and was on Imuran, and I ended with pluersy and having a flare. so they switched me to cell cept and doubled my predisone. Like I said I think its more the predisone right now because its only been a couple of weeks and I have been having diah. thats really it I have gained a couple pounds from the predisone im going to assume but I lmost feel like mtself again I have been going back to the gym and running. Im scared to start the decrease again but I have to wait until my blood work is all negative then I can start to decrease

:-)  

Posted 8/3/2008 5:04 PM (GMT 0)
My doctor put me on 2,000 mg of CellCept and I felt better than I had in years. More energy and Much better cognitive function. But after a few weeks my kidney functions started to be affected negatively by the CellCept so she had to decrease my dosage to 500 mg. I was so disappointed but even the small dose helps. I've had no other negative side effects. I hope it works for you!
Posted 8/5/2008 6:36 PM (GMT 0)
Today my Rheum put me back on CC to take 1000 for 2 wks then 1500 from then on. I will see what effects if any I get. She said I really needed it to control the disease. Also told me that shortage of Vit D is common among Lupus patients and will probably be on it for the rest of my life....she is following up with blood tests every 2 mos.
Just hope I find the success the others here have had with it.

Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium supp, cellcept, cymbalta, multi vit, flaxseed oil
Posted 8/8/2008 2:52 PM (GMT 0)
This first day back on CC I broke out in hives again.
Has anyone else had that experience? She took me off again for good.

Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium supp, cymbalta, multi vit, flaxseed oil
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