Re: Steriod reduction -- Steroid Warning Network

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Date Posted: 16:40:59 05/26/07 Sat
Author: Karen (Thanks!)
Subject: Re: Steriod reduction
In reply to: Ivy 's message, "Re: Steriod reduction" on 14:14:04 05/26/07 Sat

Ivy:

How cool! I am a little bitty thing too. I am about 4'10"
My "normal" weight was 88lbs. I probably was a little too thin at that point too, but now I am at 62lbs. As you can see drugs do weird things to my body. My Pulm. told me not to go above 50mg of Imuran due to my body size. I am at 25mg. I don't know if has helped or not. Things with me change daily. Some days I can do things and some days I can't. I have had a lot of trouble with pulling cartlige/muscles in my rib area - not good for someone with breathing problems. I am told this is a side effect from the steroids thinning the ligament, cartlige, and muscle. I have absolutely NO muscle mass right now thanks to the steriods. I am actually a mess. I went to the DO originally for nutritionally help and to help me get built back up. He does all kinds of whacky stuff that I was a little gun shy of too at first. He really has helped me. About 3 weeks ago I pulled another muscle on my left rib side and got a bad chest cold that I am just now recovering from. I sometimes wonder if all the stress/trauma on my body plus the steriod wean is causing some of the withdrawal symptoms to be worse.

I did take my Imuran today and I am going to stay on it. I can only do one thing at a time. So my decision is to see if I can breathe without steroids. My husband thinks that the steriods are just really killing me. BO basically is irreversible and if it is scarring and not inflammation the steriods are of no help. The DO thinks that he can help me get more lung function, so I am going to both the Pulm and the DO. Both know what the other is doing and even share blood work results. I just didn't tell the Pulm. about the Imuran and now I don't have to because I am going to continue taking it. All these drugs confuse me and I get so worried about what will or won't happen if I take them or not take them. This has been a really hard disease on me as I have a 3 yr. old son. I truly believe God has a plan for me and will be with me every step of the way. I just have to make good decisions and not be too impatient to get off the steriods.

You have been so great in your information - I thank you for your kindness and your help. This a really neat message board. I find that you can get alot more REAL information from people who have been there and done that than you can from doctors.

Thanks again! Karen

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Replies:

Re: Steriod reduction -- Ivy (Definitely Understand!), 09:50:57 05/28/07 Mon