Re: Perculation Update -- Steroid Warning Network

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Date Posted: 15:40:14 06/08/07 Fri
Author: becki (wishful thinking)
Subject: Re: Perculation Update
In reply to: Karen 's message, "Re: Perculation Update" on 07:16:42 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

Thanks for the suggestions. I am a drs worst nightmare. When the last time I was on IV decadron they also used percussion therapy. It ended up giving Aspergillis and MRSA a great playground. I had a chest tube for 4 mos and had to have half a lung removed. The last round of pred a year ago damaged the cartiledge in my trach causing trachealmalacia. A fancy term that means my trach almost collapses when I exhale. This is the first time I've had steroids since then. The good thing is that this is free fluid, not mucous or blood,(been there too) and there isn't an infection now. I also use 2% Lidocane in my nebulizer for the cough. The asthma seems to be gone; this is all from the irratation/imflammation to the airways. They are very scarred and don't take coughing well at all.
My dr in his infinite wisdom wants me to stay on 20mg of pred till Monday. I think he has forgotten my last run of pred started the same way. I haven't decided if I'm going to or not; his body hasn't been destroyed. Keep me in your prayers. I am going to make homemade cough syrup tonight( growing up in Tn. does teach you a few things.) It has to work as well as the other stuff they've given me.
becki

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