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Posted 7/24/2007 4:23 PM (GMT 0)
Hi.... My name is Michelle and I was dianosed with SLE about 4-1/2 years ago.  I have been in a horrible flare for about a year or so.  I have tried several medications.  Imuran almost killed me.  I am now taking Cellcept.  Does anyone here take Cellcept?  Can anyone tell me the pros and cons to it (from the patient perspective)? 

Plaquenil-400mg-Coumadin-17-1/2mg/day-Cellcept-1000mg hopefully increasing to 2000mg per day.

Posted 7/24/2007 4:33 PM (GMT 0)
Hi Michelle,

First I want to welcome you to the forum. It's a wonderful place to share information and support with folks who know what you're going through. I'm glad you're here.

I take CellCept and love it. It helped clear my brain fog and gave me much needed energy. Soon after I began taking it I felt better than I had in months. I was taking 2000mg per day. I hope your rheumy checks your labs monthly because it's especially important with this drug. After I had been on it for a while my bun and creatine levels went up and my rheumy suggested that she thought it was from the CellCept so she cut my dose in half, down to 1000 mg a day. I don't feel nearly as good at this level and am hoping that when I see her this Thursday she'll supplement it with another med so that I can get out of this latest flare.

Not everyone has that side effect, however, and I hope you don't have any negative effects from it. It had a pretty remarkable effect on how I felt. How do you feel now that you are on it? I'll be anxious to hear how you do when you increase it to 2000mg.

Take care and let us know more about you and your lupus.

Pat
Posted 7/24/2007 4:52 PM (GMT 0)
Thank you for the warm welcome.

I started taking the Cellcept on Sunday.  I have been flying high since the second dose!  I feel like I have a burst of energy.  I haven't had that feeling in years!  I will be getting blood work done every two weeks for awhile to coinside with my clotting blood work.

My doctor is about an hour and a half drive from me and is very kind and understanding.  I initially started on Methotrexate but it stopped working.  Then tried Imuran and almost died.  Now on to Cellcept. 

After taking the Imuran for 6 weeks, I began to vomit violently.  I managed to dehydrate myself in 45 minutes.  When the ambulance arrived my blood pressure was 60/30.  After a few days I bounced back but still had the soaring white counts.  When I arrived at the hospital mine was 29.9, last week 17.8. 

I do not take any steroids by choice.  I have thumb and wrist joint involvement.  I get regular injections and wear braces on both of my hands.

I do work full time.  I am an accontant with a local firm.  I have a wonderful supportive husband, 2 children, and 2 grandchildren.  My son will be heading off to college in a month.  Lots of stress!!!!

 

Posted 7/24/2007 5:19 PM (GMT 0)
I also take Cellcept and it has been my miracle drug. My cognitive dysfunction has gotten bad enough so that I was unable to carry on a conversation or drive -- so much for keeping my career and business going. Imuran didn't do anything for me, neither good or bad. I've now taken Cellcept since October and really feel amazingly better. The only thing that might be a side effect for me is that my hair seems to be thinning. That's a small price to pay for my brain! I hope the Cellcept helps you feel better soon; Glad you have joined us!
Posted 7/24/2007 6:04 PM (GMT 0)
Hi Michelle, I don't take cellcept but I just wanted to welcome you to the group. Like Patty said you will find so much support here it is unbeleivable. I've actually felt overwhealmed by the caring and compassion people here give.
I hope you get your meds straightened out. I know some people might not understand when you say you've been in a flare for a year. I think everyone here can relate to that. Trying to get the right meds and the right doctors are the key to success.
Again welcome to the group
carol
Posted 7/24/2007 7:52 PM (GMT 0)
Like Carol, I don't take Cellcept either but I did want to welcome you here. :-)

Great group, as you will see. Helps to have people to talk to that really can understand what you are going through and give you empathy rather than always sympathy. Its hard when no one knows how you truly feel. Keep posting. I'm glad the Cellcept is working for you... after all the good things I've heard I think that is one I will ask my rheumy about when the time comes that Plaquenil is not cutting it anymore.

Take Care
Posted 7/24/2007 9:38 PM (GMT 0)
Michelle, you have already gotten some wonderful welcomes and some great feedback about Cellcept. I don't have any experience with it, but I really hope you have as much success with it as others here who have tried it and that you don't have any problems with it. Like the others said, this is a great group of supportive people who truly understand what it is like to live with all the ups and downs of this disease. Take care and I'm so glad you joined us.
Posted 7/25/2007 2:25 AM (GMT 0)
Michelle, just wanted to welcome you. I havent been here long but so far, these ladies are very friendly and helpful, even if its just to listen. I am on Plaquenil, so I dont take the Cellcept either. But just wanted to say welcome and good luck!!
Dolly
Posted 7/25/2007 2:36 AM (GMT 0)
Thanks to all for your warm welcome.

I agree it is hard to find people who truly understand what we go through on a daily basis. I have a person at work who can be very callus. I keep thinking she should have fevers up to 102 every day and see if she could function!

I am hoping that Cellcept will be the med for me! I go back to the doctor in a month but he said to call him with any problems in the meantime. He really is a wonderful doctor. He gave me his cell phone number and said to call him any time day or night. I have used it on a few occasions and actually have had some Sunday night phone calls from him as well just to check in.

Thanks again!
Posted 7/25/2007 3:56 AM (GMT 0)
Welcome Michelle,
I have been taking cellcept for a year. I have had virtually no side effects aside from diarrhea in the beginning. I'm glad you have a good doctor it makes all the difference in the world. I also have my docs cell and home number; she's been a God send to me. Anyway you'll find alot of understanding, compassionate folks here with good advice!
God Bless,
Judy
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