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churg strauss

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Old 01-04-2013, 06:31 AM   #1
Join Date: Jan 2013
Location: tampa florida
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startrekker47 HB User
churg strauss

I've been fighting churg strauss a few years now and I am currently on Rituxin, Methotrexate, and prednisone. I am also on Advair 500, a rescue inhaler, 6000 i.u. of vitamin d and a few other things to help my breathing. When I 1st saw the doctor, his pharmacuetical helper said usually people with this extremely rare disease average about 5 yrs life expectancy. I'm determined to beat this but it has been hell. I have most of my symptoms under control but when they try to ween me off the prednisone I get severe muscle and joint pain. Then they have to put me back on the prednisone. I still work but with great effort. I use my ability to get to work as a barometer. If I get to work I'm still battling. I'm beginning to wonder if I am addicted to the prednisone. the rituxin was supposed to help me get off it and it has helped to control alot of the other symptoms, but the pain when I try to ween off the prednisone is extreme. Has anybody ever been addicted to prednisone and what did you do other than the weening off to help you to get off it.

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Old 01-07-2013, 08:01 AM   #2
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Re: churg strauss

Sometimes steroids are just part of the medications that work for AI diseases and appears to be a first line treatment. I know that all drugs carry risks but sometimes you need to weigh the risks against the benefits, and one drug may not be all you, as an individual, need to control your symptoms. What has your Dr proposed as a treatment course for your muscle and joint pain, if anything, other than steroids, or how long you might be on them? You really can't be "addicted" to steroids in the sense that you mean. Prednisone is the standard treatment for your condition and your Dr is the one to talk to concerning it's use. I also would recommend not listening to pharmaceutical helpers when thinking in terms of life expectancy, or using Dr. Google. I would think that, in addition to your Dr, a good old fashioned face to face with other people who have your disease in a group setting might be just the ticket to set realistic expectations, if you haven't done so already. Best wishes.

Old 09-09-2013, 08:39 PM   #3
Join Date: Sep 2013
Location: New Jersey, USA
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witheroney HB User
Re: churg strauss

I am 6 months into a Churg Strauss diagnosis, just now off steroids, bloodwork looks good, but experiencing pain and swelling in my lower legs, and some fatigue, but not incapacitating. Hoping that will resolve itself as my body gets used to being off the prednisone. I am taking ibuprofen which helps somewhat but I will ask my doc about other options to manage the swelling and pain my next visit.

Knowing how few people have actually been diagnosed with this disorder, I have made a decision to ignore any stats that talk about life expectancy or other doomsday scenarios.... and do what I can to stay healthy in the meantime.

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