Hypersensitivity Pneumonitis

[Teresadeeb]

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!!

[Damon1864 Volunteer]

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

[Teresadeeb in reply to Damon1864]

That’s so sweet. Thanks Bernadette!

[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

[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

[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.

[Teresadeeb in reply to anng18]

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

[R0B1]

Hi Teresa

i also am new to the forum and have been living with the same condition for almost four year that is slowly getting worse and was also trying to get some help and answers, other than the meds my doctor has gave me the only thing i can say is i know its hard but any kind of exercise you can do i find helps also eating the right foods benefits my breathing and you probibly have already found out lying on your stomach when trying to get asleep helps, i also have a dehumidifier and air purifier in my bedroom and living room this also helps. LOL Robert.

[cazza34]

Hello I have Chronic HP since 2015 I also have fibrosis of the lung caused by scarring. I've steadily got worse from not being on oxygen until 2017 and then only ambulatory to now in 2020 being on it 24/7 with a concentrater at home and the canisters. It's of course especially hard with the pandemic as I'm still shielding and have been since March. I'm on immunosuppressents x 2500mg daily and 15mg prednisolone and codeine for cough suppressant and the oxygen. I've never had a lung biopsy only CT scans and lots of blood tests and allergy tests. I also had ground glass in my lungs. Its an exhausting disease. Feel free to get in touch if you have any questions.