Re: Perculation Update -- Steroid Warning Network

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Date Posted: 07:16:42 06/08/07 Fri
Author: Karen (maybe some help)
Subject: Re: Perculation Update
In reply to: becki 's message, "Perculation Update" on 04:24:21 06/08/07 Fri

Becki:

I am new here so I don't know your whole story, but from this post it seems that you take the prednisone for your lungs. I was diagnosed with BOOP (Bronchiolitis Obliterans Organizing Pneumonia) last May and put on Medrol. The organizing part is gone, but is seems that I am left with scarring in my small airways. Steriods can't help scarring so I started to wean in January and I am finally down to 8mg of Medrol (= to about 10mg pred.) I have had all the dreaded steriods side effects except the weight gain. In fact, I have lost 25 lbs that I can't afford to lose. I have no muscle mass. I have blood sugar issues. High cholesterol and blood pressure. I have torn rib muscles twice (bad for person with breathing problems). I get every cold/flu that is out there. I had the acne and the moon face. I have osteoporosis. Shall I go on?!??! Anyways..I do understand your frustration with this drug and I too always wonder if there is anything else that could help with lung issues.

I never had fluid in my lungs, but I did have a lot of mucus and coughed for months last year. I used a flutter valve to help raise the secrections. It is called Acapella. If you google Acapella you can find it. They aren't expensive - I think around $40 or something. It did help get some mucus up. Since I don't know what you have been through I don't know what you have tried. I do know there are some things that help with the mucus. Look up mucomyst. I also see a DO (alternative doctor) and I nebulize glutathione and colliodal silver. I know that sounds weird, but it has helped me. I am not even close to being a doctor, but just wanted to tell you some things that have helped me that are a little off the mainstream thinking.

I do know what it is like to not be able to breathe well and I feel awful that you have to deal with it. I will keep you in my prayers.

Karen

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Replies:

Re: Perculation Update -- Ivy (Oh yeah!), 12:03:47 06/08/07 Fri
Re: Perculation Update -- becki (wishful thinking), 15:40:14 06/08/07 Fri