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sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 10/29/2010 8:23 AM (GMT -6)   
My Rhumy has just started me on cellcept to try to get me off prednisone. Has anyone had any experience with this medicine as reading about it has made me a little nervous. Thanks in advance.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 10/29/2010 8:35 AM (GMT -6)   
Hi!
I am in the same boat, cellcept being suggested by rheumy as alt. to my long term chronic prednisone. Decision put off by me once, and once by him. My asthma is really a growing problem, and am no longer working, I retired on SSD this Sept., and am going to try to wean down prednisone one more time, but way slower. I decided after much research and asking for feedback from forum friends, and listening to both neurologist who suggested it first, and rheumy, that it is my next step. I don't go back to specialist until April, so I am keeping my fingers crossed.
hugs,
suetoo 

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 10/29/2010 8:45 AM (GMT -6)   
Well Suetoo, I will pray that it works for you. Keep me informed on how you do with it and I will do the same.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/29/2010 9:11 AM (GMT -6)   
about 5 years ago I was having HORRID cognitive dysfunction frmo my lupus. I even gave up driving, as I would suddenly look around and not recognize where I was (even very close to my home where I have lived 30 years).

Imuran did nothing for me, and we tried a course of Cellcept. I was on the full dosage for about 18 months, and it was a miracle -- gave me back my brain! It even stopped a lot of the random inflammation I was getting on a daily basis.

Since then I have still had symptoms, but my blood work has been so very much better - inflammation rare. about 3 months ago I started having some cognitive/confusion difficulties again, and have started back on a Cellcept treatment. In just a month, while not yet ramped up to a full diagnostic dose, I am feeling better.

As to side effects -- the first couple of weeks I did have some slight stomach discomfort, and after full dosage for several months I had some thinning of my hair. But I considered that a very small price to pay to have my brain returned to me!

So, I had great results, no significant side effects, and I hope it works as well for both of you!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

NanciLee
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 10/29/2010 12:41 PM (GMT -6)   
I just went off cellcept ( for Sjogrens) It wiped me! I was nasuaous ( NO WEIGHT LOSS, DANG IT!) the whole time. When they doubled the dose to 2 grams a day.. oh my gosh, I was so sick..
 
My liver functions went crazy and they took me off.  BUT I have to tell you. the following 2 weeks of being off that was the best I have felt for a year! something was working!! Once they figure out teh liver.. I might go back on Half dose and see if I can tolerate it.
 
Nancy
 
GOOD LUCK!!!

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 10/29/2010 7:37 PM (GMT -6)   
Linnwood and nancilee thank you both for you info. I pray it works for me. It would be great to feel semi normal again. I will continue to post as I try this. I pray for you all that you have good health. Life sure isn't easy with Lupus this much I do know. Thanks again and God Bless!
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 10/31/2010 2:59 PM (GMT -6)   
Hey sonyalee! I hope the cellcept is your miracle drug and helps you feel so much better. It was deffinatly not a good drug for me but I hear many many good stories about how it has helped the majority of the people that take it! I look forward to hearing how it treats and you pray for improvement :)
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 610
   Posted 11/1/2010 3:40 PM (GMT -6)   
Yeap...Cellcept rocks.  I was on prednisole for 19 years and none of my previous rhumty able to wean me off from the Pred.  This rhumty started me the Cellcept approx one and a half year ago, and now I am totally off all the Prednisole.  I was hesitated to take the cellcept at first because I had severe reactions from Imuran, but I gave it a try and it works miracle on me.
 

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/2/2010 12:32 AM (GMT -6)   
i also had a reaction from imuran.. Maybe I will have good luck. still a little nervous of the side effects but just praying it doesnt bother me. Thank you all soo soo much.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

new2lupus
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/18/2010 7:42 PM (GMT -6)   
I was diagnosed w/ SLE in June 2010 and started on Pred right away to get the severe joint pain / inflammation under control. Tried tapering off pre twice but first time had a major relapse and second time I developed a Vasculitis in my index finger - became dark, cold and unresponsive. was then hospitalized and put on high dose of pred. My rheum soon after started me on Cellcept to try to control the inflammation. I experienced major dizzy spells when on 2,000 mg/day but am doing fine on 1,500 mg/day. I have developed some sort of herpes infection with having a suppressed immune system. Exposure is highly inexplicable and test results highly inconclusive. I caution to be VERY careful about touching other people, sharing anything with anyone, and washing your hands excessively while on Cellcept. I've got a nasty cold right now and just got the pneumovax yesterday. this is a serious drug but I am almost off the pred and the inflammation seems to be under control, which is good. I've also been on plaquenil since June too.

zolgher
New Member


Date Joined Nov 2010
Total Posts : 11
   Posted 11/19/2010 6:03 AM (GMT -6)   
Hi have been on predisone for some time now and Cellcept has been recommended by my Rheumy as the next step.  As it is only used for trials in Australia at the moment I am waiting to be accepted into a program, but have heard  some good reports about it but if its the right one for me I'm yet to find out. It would be nice to be weaned off the predisone but. I hope it all works out well for you.

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/7/2011 12:37 AM (GMT -6)   
I was put on Cellcept in '06 after my kidney transplant. I did have a lupus flare in '07, but I was and still am on prednisone (5mg/day). In '08 I changed to Imuran becuase my hubby and I decided we wanted to try for a baby. So long story short, after two years and a baby later, I am still on Imuran and prednisone. I think Cellcept worked well, but it did give me diarrhea. However, for me the Imuran works better, and the prednisone is only a "maintance" dose, according to the docs ( they say that its about what my body would produce, or something like that). And right now I am only on six different kinds of meds, the lowest since I was diagnosed in '95, and I refuse to meds/doses because right now everything is ok and I don't want to tempt fate.
Hope this helps.
~Suzanne~
Lupus nephritis, hypothyroidism, AVN, Pseudo-Tumor Cerebri, Kidney Transplant
Prednisone, Prograf, Imuran, Synthroid, Diamoxx
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