Question:
>A nurse at my HMO’s urgent care mention the drug Embrel by Immunex – that is >being prescripted for MS patients. Anyone have info on this?
Oh Janice! You asked the right question! I’ve been on Enbrel (that’s with an "n") for the treatment of Rheumatoid Arthritis, since November 1998. The results have been fairly spectacular for me, both for RA but mostly my MS. There is another drug by Immunex called Novatrone which is being reviewed by the FDA for Chronic Progressive MS patients. It’s been recommended and awaiting final approval. But Enbrel is what she mentioned, huh? Where are you that the nurse told you that? I am so excited to hear that. I’ve been calling and telling Immunex how well my MS has been doing since I’ve been on it since I started it and last summer they called me and we had an "interview" that ended with them asking me if I’d be willing to be on a trial of Enbrel for MS. I initially said yes, but then qualified it only if I could be sure I would be getting Enbrel. I haven’t heard back from them but it made me aware of them thinking about doing a trial. Apparently, to their knowledge there are about 10-12 of us MS/RA combined patients on Enbrel and we all have reported the same results with our MS. In fact, the lady I spoke with confided that many said the same as me: The Enbrel worked better for my MS than it does for my RA. Enbrel works by decreasing the amount of tumor necrosis factor alpha (TNFa) in the body. TNFa is elevated in several autoimmune diseases such as lupus, MS, RA, Chron’s and also in Congestive Heart Failure. MS Research has focused on TNFa for a while but experiments have been with monoclonal antibodies to TNFa in chronic progressive MS patients. This study was abruptly canceled due to an increase in MRI enhanced lesions after 6 weeks of treatment so my neuro was reluctant to have me try Enbrel. But Enbrel is a "receptor" for TNFa, not a monoclonal antibody. It works much like a sponge to sop up the excess TNFa. We did an MRI after 6 weeks and there were no new lesions so this may be a good sign for another possible MS drug in the future. I have had a total of 3 MRI’s since I’ve been on it and one SPECT scan. The MRI’s have all shown no additional lesions and the SPECT scan showed a low level of whatever they were looking for which means that there is no recent myelin destruction. (I’m a little vague on this one…it’s a new experimental test that MAYO is doing) How has Enbrel helped my MS? My neuro-opthomoligist was surprised to find that my vision had improved still from my attack of optic neuritis in 1996. He had told me that after about a year, there would probably be no further improvement but after 1 year on Enbrel, this would now be the fall of 1999 and 3 years after ON, my field vision tests showed a marked improvement, as well as improvement on my color vision tests. I have had no real exacerbations since being on Enbrel. I have had some UTI’s which will bring on a two or three week fatigue and dizziness episode but no numbness or down and out attack. The fatigue is lifted for the most part. I only hit the afternoon "wall" occasionally. It’s usually a sign that I’ve been overdoing it or I’m getting another UTI. My incontinence has improved. I have only fallen one time and it was in the heat of the Florida summer. Mind you, all of this has been cumulative in the year and a half I’ve been on it. It took 11 months for me to say, wow, here’s a big difference. Some things were immediate, like my energy level. I guess you can tell, I cannot say enough good things about Enbrel. I should also point out that I have a mild form of MS as far as comparison to other’s around here I think and I started if fairly soon after my formal dx with MS. The only other drug I tried was Copaxone which gave me terrible side effects. Fatigue, Incontinence, Double Vision, memory problems, headaches, and mild foot drop were my biggest problems I can remember off hand with MS. I had ON twice in one year and fell a lot. I would say that between the MS and the RA I was in bed the majority of my day and had a very high pain level. Last month I moved to a new house, something I would never even have considered before Enbrel and didn’t nap for three weeks. Not that this was a good thing! I’m paying for it now with bad back spasms and a forced rest but it’s better than my usual MS attacks. Enbrel hasn’t cured me of either RA or MS but it has made my life more manageable. I wouldn’t give it up for anything short of a cure. Enbrel is a shot taken twice a week, sub q. There are no side effects for me except for occasional bruising. Well, unless you consider loss of appetite a side effect. For the day I take the shot and the day after I have no desire to eat. I should also point out that I’ve lost 40 lbs on Enbrel but I don’t know of anyone else who had this experience. I only know of two gals who had bad reactions to it on the RA ng I follow. One was an allergic reaction and the other it made her RA worse. It costs about $1000 per month so off label use would be very costly unless of course if it’s being used now by a fair number of doctors and you could petition your insurance company to cover it off label. Here are there web address of Immunex and Enbrel: http://www.enbrelinfo.com/ http://www.immunex.com/ and phone numbers: Immunex is : 1-800 466-8639 Enbrel hotline: 1-800-4ENBREL Reimbursement Hotline: 1-800-282-7704 Gosh, what else can I tell you? I think Enbrel will be a great drug for MS’ers. I’m glad to hear that the word is reaching out of the RA community for MS patients. It will soon be ABCE I’m sure! Certainly we can spell something out of that! Please feel free to email me…take out the NOSPAM if you need more infor or just want to talk about it. Hugs…. Diane W. Orlando "Dream as if you’ll live forever, live as if you’ll die today." – James Dean
Response:
A nurse at my HMO’s urgent care mention the drug Embrel by immunex – that is being prescripted for MS patients. Anyone have info on this? j who is really jan, janice or jkl
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