Question:
Thanks for your advice, KC. I don’t have kidney involvement, so I may be ok in that regard. I think what my dr. is looking at is the good results acheived with reduction in sed rate. We haven’t been able to move my sed rate for well over a year now. Prednisone is the only thing that keeps me going. All the prednisone-sparing drugs are a bust. I’m willing to try it. My dr. does monitor liver and kidney quite regularly. I’ll let you know how it goes. Sandy
Response:
MindSpring User <gmsin…@mindspring.com> wrote in message
news:7tj9h8$od$1@nntp2.atl.mindspring.net… > Has anyone had any experience in using Enbrel for lupus or other non-RA > autoimmune diseases. My dr. wants me to try it, since nothing else has > reduced my sed rate or my ned for prednisone. > Sandy > MindSpring User wrote in message
<news:7tj9h8$od$1@nntp2.atl.mindspring.net>… > Has anyone had any experience in using Enbrel for lupus or other non-RA > autoimmune diseases. My dr. wants me to try it, since nothing else has > reduced my sed rate or my ned for prednisone. > > Sandy > > I e-mailed the manufacturer of Enbrel and asked them about the use of it for controlling Lupus.Here is a copy of their response.If you try Enbrel could you e-mail about what kind of result you have with it.My daughter has protein showing up in her urine an I’m afraid her kidney maybe affected.You mentioned something about sed rate is it a indication of internal organs be affected. Charles … I’m really pleased that you dropped me a note. First of all, I’m not a physician so it’s important that you note that in all of my correspondence. As you may be aware, Enbrel is FDA approved to treat moderate to severe rheumatoid arthritis and juvenile rheumatoid arthritis. There are a number of areas in which the drug is being studied for its potential to help people with various immune system disorders, lupus being one of them. The best thing to do is to have your daughter’s physician call 1-800-IMMUNEX and ask for Kim Murray, a pharmacist with our company, who can help the physician better understand Enbrel and TNF inhibition may play a role in lupus. You may want to check out our website for more information as well: www.enbrel.com and www.immunex.com … hope this helps.
Response:
Has anyone had any experience in using Enbrel for lupus or other non-RA autoimmune diseases. My dr. wants me to try it, since nothing else has reduced my sed rate or my ned for prednisone. Sandy
Response:
On Thu, 7 Oct 1999 19:14:48 -0400, "MindSpring User" <gmsin…@mindspring.com> wrote: >Has anyone had any experience in using Enbrel for lupus or other non-RA >autoimmune diseases. My dr. wants me to try it, since nothing else has >reduced my sed rate or my ned for prednisone. >Sandy
No experience Sandy. Just the words of our fave US doctor, Dr. Danial Wallace. He doesn’t advocate the use of Enbrel for Lupus patients as it is more toxic to the kidneys apparently than other such drugs. He did say for RA alone that it was a promising drug but he felt it too risky for Lupus. However, there are plenty of docs going against his suggestions (though he was a major player in the clinical trials of this drug) so I guess if your doc wants to try it I would just be more cautious about getting kidney and liver function tests done more often for a while. If you have any kidney involvement I would really reconsider what your doctor is suggesting. But I’m not a doctor, I’m strictly reacting to what I personally heard Dr. Wallace say at a seminar here in Houston. Take care and good luck. If you try it and it works well for you, do be sure to let us know. I know that a significant number of RA patients have gotten relief from it. KCat
Response:
My rheumy is talking about putting me on this. She says that while it isn’t indicated for MCTD, she is going to try to get approval using my inflammatory arthritis as the reason. Anyway, I filled out the paperwork for precertification today and I just wanted to know if anyone here has tried it and what problems, if any, you experienced. She says that there is not as much of a need for laboratory checkups with this and she would rather have me take this than up my dose of Methotrexate or Imuran. Thanks, Mel
Response:
Hi, I’m Lynn, a lurker here. 
) I too have MCTD and what my rheumy diagnosed as inflammatory polyarthritis. I have been on Enbrel since October, and I am literally a new woman. It has drastically reduced the pain, inflammation and swelling, redness, etc. I have much more mobility and endurance. This has allowed me to get more active again, starting to exercise (swimming and walking) and do housework, grocery shopping, etc., which has helped me build my energy back up somewhat. The only problem I have had at all was a mild infection. I got a throat virus while on the Enbrel, but I got it treated right away. I went on antibiotics and a dose-pack of prednisone for one week, while taking a week and a half off from the Enbrel. It cleared up just fine, and I’m back on it with no problems. My rheumy described Methotrexate as taking a shotgun to your immune system to get rid of the inflammation, and Enbrel is more like a scalpel. You do need lab work at least every three months, as you can become severely anemic, but from what I understand this is less than with MTX. HTH, Lynn "Melanie Kopfinger" <kfin…@mindspring.com> wrote in message
news:9cs279$4sk$1@slb7.atl.mindspring.net… – Hide quoted text — Show quoted text -> My rheumy is talking about putting me on this. She says that while it isn’t > indicated for MCTD, she is going to try to get approval using my > inflammatory arthritis as the reason. Anyway, I filled out the paperwork > for precertification today and I just wanted to know if anyone here has > tried it and what problems, if any, you experienced. She says that there is > not as much of a need for laboratory checkups with this and she would rather > have me take this than up my dose of Methotrexate or Imuran. > Thanks, > Mel
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