Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Hi , Thanks for your reply. I appreciate all your advice; some things I had not thought about---food contributions. I had read on this board a couple weeks ago about someone linking coffee to her cough so I had quit coffee then. I don't eat much in the way of processed foods, but dairy is surely going to be an uphill battle for me 'cause I love my ice cream and cheese! But at this point, anything is worth a try. I saw earlier today a post where someone mentioned a hurting back and I never put two and two together---cough and back! Duh! Anyway, 3 months on plaquenil and hopefully I'll feel better. Thanks also to Joyce, Sher and Leanne for your welcome ! Later! Roxanne age 58 Asthma/PF 2006 Sarcoid 5/08 --- denise randel wrote: > 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 > gathering > much wanted information from all of you. I noticed > on > your post today that you have Sarcoid and this is > what > I'd like to discuss. > > I was originally diagnosed with PF in Aug 2006 after > a > chest xray. An additional visit with a > pulmonologist, > a CT scan and PFT confirmed this with an additional > diagnosis of asthma. > In March of this year, I began having a horrible > cough > that could not be quelled. I had since moved and > found another pulmo who has put me through the > ringer. > 2 PFTs, HRCT, 6 min walk, gallium scan and 2 weeks > ago a bronchoscopy biopsy of the lung. I've been on > Prevacid, Advair and proventil trying to tame the > cough. I got the results of the biopsy > yesterday--- sarcoid. I've been given a prescription > for prednesone for 4 weeks and plaquenil for 3 > months > after which I'll have another CT scan, gallium scan > and PFT to see if there is any improvement. > > I guess I'm confused more than anything else. The > pulmo told me and from what I've read, there is no > improving what is already done (PF) and there is > also > no cure for Sarcoid; so, what are we hoping to > improve? 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 > > > > > > ________________________________________________________________________________\ ____ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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