Enbrel....

MistyRae85 · Posted: Wed Feb 28, 2007 9:15 pm Post subject: Enbrel....

Hey everyone, I just wanted to know if anyone else's doctor put them on the injections of Enbrel, I've been on it since I was about 15 and to be honest the stuff saved my life. I've looked at every bulletin on this board and nobody has talked about Enbrel, am I the only one here on it? lol I'm also on Plaquenil. Just wondering what other people's experiences with Enbrel were like. God bless

~*~Misty~*~

kkelly · Posted: Thu Mar 01, 2007 6:29 pm Post subject:

Hi Misty
I took Enbrel for about 6 months. It really helped my joints alot. I was amazed but my fatigue seemed to get worse along with the other non specific "lupus" things like weakness and nausea. Overall we decided that it wasn't a great long term treatment and it didn't put me into remission like we had hoped.....I really pushed to try the treatment as its not normally a first line lupus drug.
Also - at the same time as I took the enbrel my mitral valve prolapse developed into a full blown valve collapse. The doctors are conflicted as to what may have caused this. Some think it was prednisone use, some think enbrel other think the lupus itself caused damage to the valve. (but that is extremely rare)....anyhow ended up having to have open heart surgery to fix. It went well though and I am much better for it today. The fatigue is much better....I can exercise a bit more etc...
Anyhow - so glad to hear the enbrel worked well for you. Stay well.
Karen

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

Hi, Misty. Enbrel is often prescribed for RA, and seems to be very effective for that - I have several friends with RA who are on it. But it's rarely if ever prescribed for lupus because it can often make lupus symptoms worse. For some reason that doesn't appear to be fully understand, Enbrel seems to trigger "more" auto-antibody production in people with lupus. Since the goal of lupus treatment is to "turn off" antibody production, Enbrel is not normally helpful in treating lupus. And there have been several documented cases of people with RA who developed drug-induced lupus after treatment with Enbrel.

MistyRae85 · Posted: Sun Mar 04, 2007 7:14 pm Post subject:

Hey thanks for that info, my doctor explained all that to me when he started me on Enbrel, he said we were taking a chance, and honestly i'm glad he did because it really did help me. I have stopped the Enbrel though because recently it has been making my symptoms worse, like more fatigue and it makes my rash seem a lot worse and my joint pain. We decided to just stop it and right now i'm just on the plaquenil. I'm in remission, I have been for about 2 years which is amazing because a year ago I gave birth to my daughter. But again thanks for the info.

Misty

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I'm glad you were able to have your daughter while you were in remission - I'm sure she must be a joy. They are SO cute when they are little, and I'm a real sucker for little girl baby clothes. I only had boys - after about 3, they don't like "cute " clothes any more. So I really enjoy buying little girl baby things when any of my friends is expecting a girl.

MistyRae85 · Posted: Mon Mar 05, 2007 7:32 pm Post subject:

Yeah that's my favorite thing to do, is buy her clothes and dress her up, even though she'd prefer to run around in just a diaper lol. And yes I was very lucky to have her while I was in remission, I didn't think I would ever be able to have kids and I've always wanted them. Even though I had her a little sooner than I planned she's my little miracle. I thank God everyday for her because I know she was meant to be.