I have an uncertain diagnosis. Biopsy during cancer diagnosis in 2007 found sarcoids in lungs. Had never had a problem with them at that point, but now having pretty severe problems with shortness of breath after mild exertion, chronic dry cough, tightness in chest, trouble breathing while lying down, and dizziness and occasional brief headache when I stand up. Also have volitional tremors, but they may be a holdover from cancer treatment.
Pulmonologist has eliminated asthma, but says PET and CT scans (done recently for cancer followup) don't show enough sarcoids to account for symptoms. Next step is getting scoped, but before that he wanted to see if Prednisone would help. He prescribed one week at 40 mg/day, another at 30 mg, and a third week at 20 mg.
My main question at the moment is: How quickly should I expect the Prednisone to provide some relief from symptoms, if ever? I'm four days into the first week and feeling no better--maybe even worse. Sleeping is getting to be a real problem because I get so short of breath. If 40 mg have no effect, will 30 or 20 mg?
Second question: If neither asthma nor sarcoidosis, what else could it be?
Cancer treatment (chemo, radiation, surgery) ended 06/08, by the way. Cancer was in both tonsils. I'm in remission.
I'm happy your cancer seems to be staying in remmission.
How quickly should I expect the Prednisone to provide some relief from symptoms, if ever?
I'm wondering the same thing about myself.....I was just DX'd with Sarcoidosis two weeks ago, and started the same regimen of Prednisone as you, except I'm suppose to drop every two weeks eventually down to 20mgs, and then keep taking the 20mgs for at least three months. I haven't had any noticeable response yet either, when you hear most people talk it's like it was instantaneous. From what I have read it takes "time" for the steroids to create an immune suppression, what they mean by "time" though I don't really know either. I've read also that sometimes they will add Methotrexate along with the Prednisone, or just use Methotrexate by itself, because some people don't respond to Prednisone.
If neither asthma nor sarcoidosis, what else could it be?
I know in my case my Pulmy didn't think he was going to get anything on the inside of my lungs either, I had peribronchial thickening, which they thought was probably from smoking, but when they did the Bronch Scope the thickening was from granuloma formation from Sarcoidosis. I also have fairly extensive hilar lymphadenopathy, but it turned out those weren't biopsy-able without having total open chest surgery. So we did the Bronchoscopy instead. I know with me they ruled out fungal infection, and viral & bacterial infection, especially TB, mainly from the bronch scope because they take washings from the lungs to culture. Also prior to the scope I had a HIV test, PPD test, and an ACE level test, the first two were negative, but my ACE was high and out of range. Also they asked me if I breath any dust from metals, or mold. Another interesting thing that can cause pulmonary granulomas is accidentally inhaling food or pills.
So I guess it sort of depends in 2007 how many other granulomatous conditions they ruled out, to say that it was Sarcoidosis, and the unique thing about Sarcoid granulomas are that they are non-necrotizing, or non-casteating. Where as most other granulomatous forming conditions the center of the granuloma starts to die or necrotize. Here's a link that explains this in more detail:
Personally I think using the Prednisone as a diagnostic tool could be dangerous, I think while your waiting to have your scope, it would be better to give supportive oxygen, and/or a bronchodilator inhaler. The reason I say it could be dangerous is if you do indeed have an infection, the corticosteriods will actually make it worse, and it's hard to totally rule out infection until they do bronchial washings when they do the scope. But I suppose your lungs looking and sounding clear your pulmy figured it was worth the risk.
I'll warn you about the Bronchoscopy, because they don't tell you this in the Brochure, when they have to numb your throat before the procedure it is a pretty unpleasant experience, especially if you have a strong gag reflex like me :-), but then after that they turn up the anesthesia, and you pretty much fall asleep, and the rest is peaceful :-)
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