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C/Z Fan
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Date Joined Apr 2011
Total Posts : 19
   Posted 4/7/2011 6:15 AM (GMT -6)   
Hi Everyone,
I've been reading for a few weeks and just signed up. I'm amazed at what some of you have been living with.

I've had a pretty mild case of lupus for about 20 years. It's been controlled with plaquenil and an occasional few months of prednisone when I have a flare. As I read your stories, I find that I have many more symptoms that I never attributed to lupus--numbness and tingling but mostly I feel that I have poor circulation b/c my feet fall asleep very easily. They even get numb when I'm on the cross trainer for more than 20 min. at the gym. I've also had lots of run-ins with the chicken pox virus--cold sores, chicken pox (once as a child and once as an adult) and shingles. Anyone else have a higher occurance with that?

More recently, I've developed pleurisy (about 6 mos.). I'm now taking plaquenil, predinisone and just added Cellcept. Does anyone know how long Cellcept takes to have any effect? Does it build up? I hate being on meds and I'm hoping to get back off of everything except the plaquenil.

One other question. Has anyone tried accupuncture? I've been going for about 11 weeks. It hasn't helped the pleurisy but I notice a difference with some of my digestive issues. I'm less lactose intollerant, which is a real plus for this dairy product fan.

I look forward to getting to know you all and wish you much success in your search for good health.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/7/2011 8:13 AM (GMT -6)   
We do have people who've used acupuncture, hopefully one of them will see your post and be along to comment about that.

For me, Cellcept seemed to start helping after about 3 months. Its real use is as a kidney-transplant anti-rejection drug, so it's very potent. Some lupus patients seem to remain on Cellcept an awfully long time, but I read something about unless you really were transplant patient, it should be limited time usage just like most chemo therapies.

Cellcept in my case was addressing some severe cognitive dysfunction. I stopped after about 18 months when my brain seemed to be almost normal again. Since then I seem to have continued to improve. I consider Cellcept my miracle drug as I was useless without my brain.

I understand hating taking meds, but coming off these things slowly makes a HUGE difference to how your body responds. Kinda' like sneaking out of a child's room after they seem to have fallen asleep. Move too fast and the disease wakes up again! It's been 4 or 5 years since I was on both Cellcept and prednisone -- and just a couple days ago I took my last dose of 1 mg prednisone. You can come off the meds, but it has to be quite slowly for best results.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

C/Z Fan
New Member

Date Joined Apr 2011
Total Posts : 19
   Posted 4/7/2011 10:01 AM (GMT -6)   
Hi Lynnwood,

Thanks for your reply and experience. Congratulations on your improvement! It must have been such a relief to get off the meds. In what way was your brain effected? What were your symptoms?

In regard to getting off the meds, I do understand the need to taper of slowly. I guess that's why I hate starting them in the first place b/c I know it will be a long time before I'm off.

Thanks again.
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