What is Polymyositis-and-Dermatomyositis
Dermatomyositis (DM) is a connective-tissue disease related to Polymyositis (PM) that is characterized by inflammation of the muscles and the skin. The cause is unknown, but it may...
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Azathioprine
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Hello everyone. I'm new and this is my first post. I was first diagnosed with PM in 2002 and large doses of prednisone, along with methotrexate, brought it under control. However, it's now back and I'm unable to take the large Prednisone dose due to past side-effects. My CK levels kept increasing (they're now at 2,900). My doc tried Enbrel, but that made it worse. Now we've switched from methotrexate to azathioprine. Has anyone here had a good experience with azathioprine (Imuran) after methotrexate didn't work? I'm hoping some of you can share some good news of your azathioprine experiences as I really need a bit of good news right now. Thanks!
Posted on 07/09/09, 08:07 am |
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Good morning, Sunshine! (sorry...couldn't resist....haha)
I'm still learning about this awful disease as my daughter is a newbie, but I'm sure some of the more experienced posters can help you out. In the meantime, I found some helpful links at the Myositis Association website. This particular link discusses medications commonly prescribed. Hope it helps you some: https://www3446.ssldomain.com/myos... Welcome, and have a great day! Teresa 
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well i am taking the imuran right now but still on high dose of prednisone so i am not sure if the imuran is working yet until we start coming down on the prednisone but so far i have not had any bad side effects from the imuran just the stupid evil prednisone
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Ive been on Imuran for over a year. It has allowed me to be weaned off of prednisone officially last week. Good luck, hope it works for you.
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Hello FLSunshine,
I had a good experience with Imuran. A year ago, I started with 60 mg of Prednisone and 100 mg of Imuran once a day, and now I am down to 15 mg of Prednisone and 50 mg of Enbrel. I no longer take the Imuran. The only side effect that I had from taking the Imuran was facial swelling. Imuran contains a lot of sodium. So far, the Enbrel has been very effective keeping my PM under control, and allowing my doctor to reduce the Prednisone dosage.
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Thanks for sharing JenkG. It's strange that you should mention Enbrel as my Enbrel experience is what led me to azathioprine and this webpage. I was on Enbrel for 7 weeks and fighting with my insurance company to approve it. I sent emails to some of the docs on the myositis board and most of them wrote back stating that, in their experiences, Enbrel made things worse for PM patients. Sure enough, at my next rheum appt, my CK numbers were really elevated. I had been feeling tired and weak, but I thought that perhaps it was a side-effect from the Enbrel. Turns out, it was the Enbrel itself. So now, that's why we're trying azathioprine. I'm taking the same daily dosage (100 mg) as you. Thank you for your encouraging story. There is hope after all........
Thanks, Linda
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Linda,
I'm happy to be of some help. Just hang in there. It sometimes takes trying different medication until you find the one that works for you. I have office visits every 6 weeks with my Rhuemy, and she lowers my dosage of Prednisone at each visit. The goal is to get my dosage of Prednisone down to 5mg a day. I also have ILD, and I was given an "Improved" report a couple of weeks ago by my pulmonary doctor after a year-long struggle with lung problems. I feel so much better. I guess I am sharing all of this information with you to let know that sometimes you may have to go through "a little something" before the change comes, but it will come. Just hang in there, and keep your spirit up. Peace!
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