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ihate2shave
06-26-2006, 08:04 AM
Hi all, earlier this year I participated in a study for a new medication. It's one of a crop of drugs that ease SLE by lowering the b-cells, and it's aimed at people with mild to moderate lupus. It was a double-blind study, so going in I didn't know if my dose would be a placebo or the real deal.

Well almost immediately I began feeling better... my malar rash disappeared, dizziness disappeared, oral sores gone, physical and mental stamina returned -- if not to the "old" me, it was a level of much higher functioning. It was dramatic, and felt like a miracle. Although he did not know himself who got what, my doctor seemed to ascertain that I'd received the dose b/c a placebo would not have caused this extent of improvement.

Unfortunately, I received the drug for only a month, and the effects were temporary. Rash returned (tho not quite to previous level, at least not yet), dizziness, that feeling of being weighed down is back etc. I joked w/my doctor - "Hey, can I get some of this stuff on the street? I'll pay anything!"

I share this with you to let you know there is hope, because a whole family of these drugs are in the pipeline -- the bad news is, the drug from my study probably won't be approved for 7-10 years, as I understand it.

Has anyone else heard of these drugs that lower b-cells, and/or participated in a new medication study? Anyone know if there are any in the pipeline that might be approved earlier than that?

ButterflyRN
06-26-2006, 09:38 AM
I was recently given Rituxan IV(which lower b-cells) with my cytoxan. I know NIH is still doing Rituxan studies. I unfortuantely have had so many drugs together with this recent flare that I don't know which one really made me feel better but it's between the increased prednisone, cytoxan and rituxan and then the plaquinel. What was the drug that you were given?? Good luck!! :lol:

debann
06-26-2006, 09:44 AM
Hi Tadpole, that sounds very encouraging and discouraging at the same time. I can't imagine what you must be going through knowing there is a drug that can help you so much but you have to wait for it. I have avoided thinking about the future in hopes that a new drug will help us all and will help our children and grandchildren. I have a family with very high incidence of auto immune disease so I am glad you brought the new drugs to our attention. Good luck. Debann

ihate2shave
06-26-2006, 10:47 AM
Hmm, thanks for those thoughts. Debann, you're right it was tough to slide back down again. :( But Butterfly, I'm going to ask my doctor about Rituxan. The drug I got didn't have a name yet, it's a phase 1 trial (they seem to usually go through 3 or 4 phases). It's made by Amgen though. Who knows if there's a side effect, maybe next year I'll sprout another arm or something. ;) I'm still glad I did it b/c maybe it'll help someone else down the line.

As I understand it, the meds that lower b-cells will allow people to successfully manage the disease in much the same way the AIDS drugs help with disease management by lowering the t-cells.