CellCept to treat Persistant Erythema Multiforme?

[sylance9]

Ive been suffering with persistant erythema multiforme (huge painful lesions) on my hand ad forearms for about 2 years straight.  The only intervention that works is prednisone on a 80mg taper and about a week after the course it comes back.  Ive been through 3 dermatologists, and my current dermatologist took me to visit with 40 other dermatologists that all looked at me and wanted me tested for lupis, various cancers, and all tested negative.  Ive been tested for herpes blood disorders and they cant seem to find any diseases in my system to cause this.  Ive tried every over the counter and perscription cream they could suggest and tried doryx, valtrex and nothing works.

The latest drug they want me to try is CellCept which is used in transplant patients to decrease rejection.   Now I have also been trying to have children, and with this drug I absolutely cannot get pregnant, as it causes major birth defects.  Also I have a giant increase in risk of cancer, and sickness.  

My question is.... has anyone had success taking this drug, and being able to taper off with no recurrence of symptoms?  Or am I pretty much stuck on it for life with no chance of having children?  Ive only found one case report online where the person tried tapering off and it came back and he is on the treatment to date still.   And how much of an increase in cancer are we talking?

Should I request an alternate treatment?   This drug really has me worried.

[sylance9]

Forgot to mention I did take methotrexate (sp?) and it made it worse.

[Jennstar528]

I was wondering if you have any successful treatments since your post? My bf is suffering from the same thing and he has tried all the same treatments and lupus diagnosis. Now the dermatologist wants to the let the rash run its course because he doesn't want to continue to prescribe prednisone anymore.

[sylance9]

No.  It's been more aggressive now and comes up on 20 mg of prednisone.  They are sending me to a research hospital now either duke or Johns Hopkins because none of the doctors here know what to do with me.  We are waiting to hear back from the nih about a program they are running but no successful treatment so far for me.

[Jennstar528]

That story sounds all to familiar. The doctor just increased him to 60mg of prednisone and started him on lupis meds but new outbreaks are still occurring. He has also suggested going to a research hospital or clinical trials but we don't have any around our area yet. I was reading some other posts and someone had success with Citrus Bioflavanoid pills. We just bought some. Anything is worth a shot. Hopefully there is an answer to this. It is so draining physically and mentally.

[Satya92]

Hi sylance9
I was wondering if you have any successful treatments. I have been suffering same as you with persistent EM since 8 years straight. The only that works is prednisone. I tried all immune suppressed drugs, but nothing works. If you did find please help me.
My email ***@****
Thanks

[Hathor1234]

Ive been suffering from facial lesions w/o any explanation from medical drs nor help. I can say colloidal silver works well. I apply and cover w a transdermal dressing (without padding) and leave it there as long as I can. I can say if my lesions are dry they won’t heal. My skin seems to heal much better when moist. It also scars much less. Also acupuncture and EPRT therapy is good on the holistic level. No drugs just a boost of your own body’s healing mechanisms. If you can find a provider I highly suggest either or both homeopathic therapies. A friend of mine had immunodeficiency and  Lyme diseases as a child. No dr could figure out what was wrong w her. Her mother got tired of the practitioners when they over medicated her child so much her liver failed. She got certified for an EPRT machine herself and her daughter is now a 30 year old healthy woman never having tested positive for Lyme since. Her kidneys and liver also healed. Good luck.