I have APS and on Clopidogrel but in the last six weeks following various CT scan, xrays, and lung functions I have been diagnosed with Alveolitis. Commonly this is an occupational disease ie farmer or pigeon fancier but as I am neither they are unsure why I should have just started with this as I have no previous chest asthma related problem before. I am under an excellent Chest Physician so I have no worries with him, at present I am on 60mg Prednisolone and tapering down but can feel my short of breath ad struggle walking returning. Just wondered if anyone else has this or is it a stand alone illness - I always think all roads lead to Hughes!!
Has anyone been diagnosed with Alveol... - Hughes Syndrome -...
I have not, but both my children for a very long time had Mycoplasma and others with autoimmune have had this!
Hope you get better soon, my daughter took months for diagnosis, (and this was prior to her Lupus and Hughes being diagnosed), she was left very short of breath... but being a family of musicians she joined two choirs and took up the saxophone and ended with good lung function again. MaryF
Not me, but a college buddy, who passed from cancer years ago, had a similar disease when he was a child. In Nashville TN where we went to college, and where he grew up, we got these irruptions of birds in the winter. Grackles, starlings, pigeons, sparrows. Thousands of them roosting in my college's magnolia and pine trees. Thousands! Their droppings turned the ground white and would quickly provoke coughing fits if one lingered a bit long under those branches. The University was most diligent about cleaning up, but frankly, the groundskeepers were outnumbered.
Anyway-- my friend had this ailment described to me as a "lung infection you get from bird poop" as a child. It took him some time to recover and his family was wary of potential lung ailments thereafter. And so, of course, when he became a teen ager he rebelled against his parents concerns about his lungs and became a smoker.
I have had farmers lung diagnosed nine months ago I take steroids 40 mg
And was on azathioprine 100 mg and have reg liver function tests
My doctor phoned me yesterday to say that the azathioprine has affected my liver
And to stop this drug immediately
I have noticed very swollen ankles and my balance has been affected and do not feel safe walking
Not sure what the prognosis is
Any of the above familiar to you
Unfortunately since my original post i have i been diagnosed with Pulmonary Fibrosis (Aug 2014). I had no connection with anything that could give me farmers lung and they did further MRI CT scans which did give the correct diagnosis for PF and I transferred to an Interstital Lung Disease Centre. They say it is secondary to SLE which I also have. I also have APS and was on clopidogrel for about 11months before any breathing problems occured. I also see from Alawrie1 clopidogrel has linked the their problems.
At the moment I am on 10 mg Prednisolone (cannot get any further down as I then struggle to breath) and 2000mg Mycophenolate which seems to be fine with my bloods. Azathioprine I also couldn't tolerate was so sick and my bloods went haywire. I still take clopidogrel for aps, which was prescribed by Prof Hughes, and prior to taking this my balance was all over the place. I have had no problems with ankles.
Do you think that you fall into farmers lung category. Wishing you the very best of health.