Has anyone been diagnosed with Alveolitis (Farmers Lung/Bird Fanciers Disease).

[Mollie01]

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!!

[MaryF Administrator]

I have not, but both my children for a very long time had Mycoplasma and others with autoimmune have had this!

ncbi.nlm.nih.gov/pmc/articl...

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

[GinaD]

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.

[alawrie1]

5years on clopidogrel and now I have alveolitis and asthma plus copd.

[budleigh4]

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

Mikesan

[Mollie01 in reply to budleigh4]

Hi Mikesan

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.

Moll x

[budleigh4 in reply to Mollie01]

Many thanks for prompt reply

Actual diagnosis was

Chronic allergic alveolitis

Cause unknown

Regards mikesan

[Anemone1905 in reply to budleigh4]

hi Mikesan, I hope that you are well and safe too. My diagnosis is also Chronic allergic alveolitis. I was diagnosed in February this year after 1 1/2 years investigations at the hospital and a big biopsy from my lungs in January. Since March I have been on Prednisolone 37 1/2 mg - in May it was reduced to 25 mg. And I am now having it further reduced to 15 mg. The prednisolone has not cured the allergic alveolitis or improved my DLCO but on the other hand the disease has not develloped further. My lung desease is caused by mold at my work and I have been working from home since march due to the coved situation. At present my DLCO is 41%. I am feeling fine - no problems with breething and I do not feel ill. My appartment is on 4th floor - no escalator and I have no problems with the stairs. My next visit to the hospital is in March . The doctor wants to reduce the prednisolone to 5 mg or 7 mg. He also wants me to take Azathioprine (Aza) or Mycophenolate. I would prefer not to take Azathioprine or the like as long time as possible as it seems that this medicine has a lot of unpleasant and serious sideeffects. If possible I would only take prednisolone. Do you have any experimence with these other immunosuppressive medication? Best Regards, Anemone

[Anemone1905]

Hello Mollie01, I have also been diagnosed with Allergic Alveolitis. So you do not stand alone. All the best

[Mollie01 in reply to Anemone1905]

Hi Anemone1905

Sorry to hear you have this awful lung disease. But since my original post I went onto to being diagnosed with with Pulmonary Fibrosis which is secondary to Lupus.

Hope you are keeping well.

Regards Mollie

[Anemone1905]

Hi Mollie, thank you for the reply. I hope that you are well and safe too. I was diagnosed in February this year after 1 1/2 years investigations at the hospital and a big biopsy from my lungs in January. Since March I have been on Prednisolone 37 1/2 mg - in May it was reduced to 25 mg. And I am now having it further reduced to 15 mg. The prednisolone has not cured the allergic alveolitis or improved my DLCO but on the other hand the disease has not develloped further. My lung desease is caused by mold at my work and I have been working from home since march due to the coved situation. At present my DLCO is 41%. I am feeling fine - no problems with breething and I do not feel ill. My appartment is on 4th floor - no escalator and I have no problems with the stairs. My next visit to the hospital is in March . The doctor wants to reduce the prednisolone to 5 mg or 7 mg. He also wants me to take Azathioprine (Aza) or Mycophenolate. I would prefer not to take Azathioprine or the like as long time as possible as it seems that this medicine has a lot of unpleasant and serious sideeffects. If possible I would only take prednisolone. Do you have any experimence with these other immunosuppressive medication? Best Regards, Anemone

[Mollie01 in reply to Anemone1905]

Hi Anemone

I have had Azathioprine to start. But it didn't suit me making me very sick.

I have been on Mycophenolate for the past 6 years 2grams a day along with 5mgs Prednisolone . I have 12 weekly bloods done to check I am tolerating it and so far everything is fine.

I dont have any side effects and have a good quality of life .

Wishing you well

Mollie

[Anemone1905 in reply to Mollie01]

Hi Mollie, thank you for the reply and the information about your experiences with Azathioprine and Mycophenolate. It seems that other people also have problems with Azathioprine...Budleigh was instructed by his doctor to stop the medication immediately as it effected his liver function. It worries me that the medicin the doctor wants me to take will cause other serious illnesses and harm my organs etc. I am 57 years old and healthy and fit, non smoker, no health issues at all until now - cronic allergic alveolitis. So I have been very fortunate to have had such a good health for so many years. There are no cure for allergic alveolitis and prednisolone only removes the symptoms not the illness. The other strong immunosuppressive medicaments might stop the progression of the illness might not - and if it does - only for a limited time. So I will try to keep on prednisolone only - until next visit at the hospital in March. I think it will be hard for me to only take 5 - 7 1/2 mg pred as the doctor wants me to do. I will get breething problems again - maybe unless - I am willing to take it together with Mycophenolate. Do you not feel nausea and stomach pain etc. ? Or was it only during the first couple of months? Or maybe not at all? Thank you once again for your kind replies. Best wishes Anemone

[Mollie01 in reply to Anemone1905]

Hi

Azathiaprine made me very ill ,dreadful sickness and caused my liver enzymes to shoot up and I had only taken it for 3 weeks. Prednisolone on high dosages helped with my breathing but this is not sustainable therefore the need to take a immunosuppressant. It is trial and error and many people tolerate Azathiaprine with no side effects. I do take lansaprazole to stop any stomach ulcers.

My lung function has decreased over the years, had to take early retirement but I pace myself now and dont require oxygen at the moment.

I would discuss what you know about all these treatments with your consultant when you see him in March.

Best wishes

Mollie

[Anemone1905]

Hi Mollie, thank you. So you did not experience that the azathiaprine stopped the progression of the disease...I really hope that they might find a new medication for people with lung diseases like ours - now that so many medicine scientists are trying to find medicine for the covid virus and the side effects - lung fibrosis. I did talk to the doctor about the treatments last time - 2 weeks ago. And he did not object when I mentioned that it worried me that the other immunosuppressant medicines have so many sideeffect. I am still working more than full time. Love my job and want to keep it as long as possible. Thank you for all your advice. I will discuss the matter with him again in March. Have a nice evening. Take care best wishes Annemone