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Experimence with treatment of pulmonary fibrosis?

Anemone1905 profile image
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Hi I am new her. I was diagnosed with Allergic Alveolitis in February and I am now being treated with prednisolone tablets 25 mg. In October the dose will be reduced to 14.5 mg under the condition that my desease is not progressing. So far the illness has been stabilised due to the prednisolone treatment. In other case the doctor will put me on a new treatment - 4 days solo medrol (500 mg each day) + afterwards Mycophenolate. Are there anybody with the same diagnosis and or does anybody have any experimence with these treatments? Kind Regards, S

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7 Replies

Hello Anemone 1905

I also have PF and Hypersensitivity Pneumonitis and have been on prednisolone for 4 years. I found the tablet to work for me. I go through high doses then weaned down and stoped. I found that staying on a maintenance dose is 7.5g per day helps, as apposed not to having. This is through my Consultant at the hospital. I have had no side effects. Sorry I can not comment on the other drug as I have not used it or no anything about it. All the best. Annie

Hello again

Sorry but I did not realise that you have been diagnosed with AA, in as far as that it is the same as me with HP they are the same. My Consultant has only ever used HP with me.

I can not tell you what causes mine as I have never had Birds chemicals worked with any of the causes that knowingly cause our lung disease. I have never even smoked I was born in 71 so who knows if there was abestos around. They have put it down to environmental could be anything.

I am 49 I have oxygen at home to do day to day tasks and gardening when I am able.

Hope this helps, you are the first person I have communicated with that has the same problems as myself. All best please feel free to contact me. Annie

Anemone1905 profile image
Anemone1905 in reply to

Hello Annie, thank you for the quick and kind replies. As was diagnosed in Februar and my illness is caused by my working environments. I am working in a very old building (built 1739) and the building have a lot of problems with mold and moisture problems in door. I did not know that until I investigated the matter in February. I have never smoked and do not have birds or the like. At present we are 3 at work with lung deseases. I have worked at home since March due to the corona situation. I am 57 and so far I am feeling fine after I got on the prednisolone medicine. Before I had troubles with the stairs to my appartment on 4th floor plus a lot of coughing etc. Is HP the same as prednisolone? I think the best is to stay on prednisone as long as possible and avoid the immunosuppressive medicins they also use to help prevent transplant organ rejection. Did you ever try the 4 days solo medrol treatment? Best wishes Susanne

in reply to Anemone1905

Hello Susanne

HP is Hypersensitivity Pneumonitis is my lung disease which is the same as yours but yours is AA. Sorry but I have never heard of that medication sink can not advise on that. Take care. Annie

Anemone1905 profile image
Anemone1905 in reply to

Hello again ,I actually have both - HP and AA..The solo medrol treatment is a treatment with prednisolone - but 500 mg in 4 days and intravenously - they use it often as treatment in situations where the illness progress. Thank you for the information about 7.5 mg prednisolone. I hope that will work for me too. Take care and have a nice evening. Best Susanne

Izb1 profile image
Izb1

Hi Anemone1905 and welcome to the site. Sorry i cant comment on your lung disease but am sure there will be some who can. It sounds like your hospital have it under control which is a good thing, lets hope its progress is slow x

Anemone1905 profile image
Anemone1905

Hi Izb1 Thank you for the greeting and the kind words

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