Rituxan -v- Clinical Trials - The option given to me yesterday, Please HELP! me?

I was diagnosed with SLE 10 years ago, and controlled it well for 6yrs with a combination of medications Prenisolone 30mg initially which was eventually reduced to between 5-10mg, hydroxchloroquine 200mg daily, Methotrexate 15mg weekly. Lately Methotrexate was stopped and Mycophenolate (Cellcept) 1500mg daily introduced in March 11. I had my first Lupus flare in March 2009 after returning from holiday in the Caribbean. Since these flare started its been impossible to get any long term relieve from lupus. I get flu like symptoms and a burning sensation like a blow torch is on my back, night sweats and i am unable to sleep due to increase prenisolone and lost most of my beautiful hair. Since starting mycophenolate, my Lupus continues to flare, I am in constant pain, always tired and fatigue my teeth is loose and my gums bleed. I have now developed discord lupus a rash which appears on my back, stomach face and upper arms which is spreading. Lupus has been flaring for 8 months now clearly getting worse and I am convince the mycophenolate has caused discord lupus which I want to stop taking. My rheumatologist disagrees and has suggested the only other treatment I should now consider is clinical trials a research study of a drug known as LY2127399 the study is sponsor by Eli-Lilly. All the information I have read about clinical trials there is no guarantee being in the trail will control my lupus. I just want to feel well again without the need to go thorough clinical trials which is so onerous and time consuming a problem for me as I cannot afford to work part-time. I recently lost my father from kidney failure due to Diabetes this was really stressful time for me and my recent blood tests shows my lupus is flaring up again. I saw my rheumatologist yesterday and he suggested I seriously consider Rituxan or clinical trials as lupus will kill me before any of these drugs will. I feel like I am caught between a rock and a hard place. Has anyone been involved with any clinical trials or taken Rituxan and if so did the new trial drug or Rituxan get your Lupus under control? Its great finding this site today and I hope someone out there can give me some guidance. Stay blessed & healthy my luppies........

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  • Hi there - I started with chemo treatment and then 60 ml prednisone which was gradually tapered off and replaced with azathioprine - I get all the same things as you have mentioned and am so relieved to hear that other people also get the sweats, burning back, ect...as my is really chronic. I am also on 400 ml hydroxchlorine amongst other meds.......I am not sure what I would do if I was offered to take place in clinical trials but think I would most probably do it.....I think we all get pretty desperate and willing to try anything to get back our old 'normal' lives.......good luck with everything!!x

  • Thank you Aloma, its good to hear am not alone with these unpredictable symptoms we luppies have to endure. I have to make some real tough decisions & is concerned with long term side affects. Thanks again, stay healthy.

  • I was about to join this research programme but my consultant has just advised a delay because I am having a flare and he doesn't wand toe introduction of another drug to confuse matters.. If you are part of a research programme you are a likely to be given a placebo (dummy) drug as an actual station. On this basis I cannot see then point for you. Definitely needs to be discussed more with the doctor.

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