Hypersensitivity Pneumonitis - British Lung Foun...

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Hypersensitivity Pneumonitis

Teresadeeb
Teresadeeb
6 Replies

I am new to this forum. I had to put down that I have Sarcoidosis, bec as use my disease isn’t included. I have Acute Hypersensitivity Pneumonitis. My breathing is getting worse every day and I was hoping to find someone else who has this disease that I could talk to. Anyone out there? I’m being treated by the Brompton in London so it’s not a phantom disease 😁. Thanks!!

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Damon1864
Damon1864Volunteer

Hi Teresa and welcome to the site, I don't have the same condition as you but I'm sure someone will be able to help. We are all here for each other, so please keep posting even if it's just for a chat. Have a good day and take care of yourself 😊 Bernadette xx

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Teresadeeb

That’s so sweet. Thanks Bernadette!

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anng18

Hi Teresa,

It's lovely that you have joined this forum. I have found it so helpful and reassuring.

I came across this a week or so ago, as I have been living with mold etc. for a long time.

Do you know how they diagnosed it and have they given you any explanation as to why you may have got it?

Its horrible and quite frightening when our breathing just seems to be getting worse.

Take care

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Teresadeeb
Teresadeeb
in reply to anng18

Hi,

I moved to the UK 7years ago and promptly got sick. I thought I had bronchitis or pneumonia from getting run down from the move. I was put on antibiotics for weeks and weeks and nothing helped. It got to the point I couldn’t breathe enough to get to the dr’s office. When I did they told me to go straight to A&E.

I was in for about a month....many, many tests....lung biopsy, everything you could think of. All the while I was on IV antibiotics and oxygen along with Prednisolone. They finally got things under control, but couldn’t figure out what was causing all the trouble. They heard and saw them”glass” in my lungs, telling me I had HP. To this day, they haven’t been able to figure out what is causing it. I’ve always had trouble with mould....very aware when it’s around but the tests weren’t showing an allergy. No clue.

Unfortunately, I’m not getting any better. They’ve increased my Prednisolone, my Aziathioprine was reduced only because I kept getting sick and when I get back to town, they want to try something besides the Aziathioprine. I feel like a guinea pig sometimes.

My doctors are great, don’t get me wrong, it’s just nice to be able to have others to chat with who are dealing with the same thing.

As an aside, because of the Prednisolone, I had quick growing cataracts in both eyes and had to have those removed (I’ve always had 20/20 vision), brittle bones...things are breaking much easier than ever, including my teeth.

It’s been a fun ride! 😁

Teresa

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anng18
anng18
in reply to Teresadeeb

Thank you Teresa for your long post.

Yes, it is horrible to be reliant on medication and still have problems breathing. Some of the side effects are horrible.

Look after yourself and take care.

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Teresadeeb
Teresadeeb
in reply to anng18

Sorry for the long post! It’s so nice to communicate with people who understand! 😁. Teresa

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