Roxanne and Sarcoid

[Guest guest]

Hi Roxanne,

I am 52 and was diagnosed with Sarcoid May 8, 2006 after a lung biopsy. In the year prior to the biopsy I too had a horrible cough, was tired all the time and very shaky and out of breath. I was initially diagnosed with adult onset asthma but the cough kept getting worse and I had had several bouts of bronchitis when they did a lung xray on 3/06, then cat scan, broncoscopy and finally the biopsy. I have stage 4 Sarcoidosis and advanced pulmonary fibrosis with the heaviest scarring in the upper half of both lungs. If Sarcoid is caught in the first 2 stages ( swollen nodes, no scarring) it is very treatable and the progression can be stopped.

Like PF everyone reacts differently to different medications. For me the prednisone makes a drastic difference. Without the prednisone my lung volumes are at 34% and I am a couch potatoe! With the prednisone my lung volume is around 60%, and I only need oxygen (4L) with exertion allowing me to lead a fairly normal ( and very fun!) life. I have been on doses of 40 mg all the way down to 5 since May 06. I have very little coughing as long as I am on 10 mgs or above, but if I go below I start coughing again. Like most inflammatory diseases, food plays a great part and any processed foods, coffee, or dairy products seem to make the inflammation worse. Right now I am on 10 mgs of prednisone and doing great, but every few months or so I have a flare up and have to go back to 20. I am glad your doctor soundas like he is treating this very aggresively. If you ever want to talk feel free to call me

(760)637-5173. Take care Roxanne- Sarcoid/PF 3/2006 California

Re: Weight Loss

Hi ,I am a new member of the board and have been gatheringmuch wanted information from all of you. I noticed onyour post today that you have Sarcoid and this is whatI'd like to discuss.I was originally diagnosed with PF in Aug 2006 after achest xray. An additional visit with a pulmonologist,a CT scan and PFT confirmed this with an additionaldiagnosis of asthma.In March of this year, I began having a horrible coughthat could not be quelled. I had since moved andfound another pulmo who has put me through the ringer.2 PFTs, HRCT, 6 min walk, gallium scan and 2 weeksago a bronchoscopy biopsy of the lung. I've been onPrevacid, Advair and proventil trying to tame thecough. I got the results of the biopsyyesterday--- sarcoid. I've been given a prescriptionfor prednesone for 4 weeks and plaquenil for 3 monthsafter which I'll have another CT scan, gallium scanand PFT to

see if there is any improvement.I guess I'm confused more than anything else. Thepulmo told me and from what I've read, there is noimproving what is already done (PF) and there is alsono cure for Sarcoid; so, what are we hoping toimprove? If sarcoid is an inflamation and is treated,does it go away?Can you tell me what to expect?Roxanne age 58 SC--- denise randel <dnsrndlyahoo (DOT) com> wrote:> This explains it all..> > > > > That's my story and I am sticking to it.> > ____________ _________ _________ __> > > Sarcoid/PF 3/2006 California> > > > >____________ _________ _________ _________ _________ _________

_> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ____________ _________ _________ _________ _________ _________ _Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

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