Hypersensitivity pnumonitis

[Lyn5]

Hi, I was diagnosed with hypersensitivity pnumonitis about 3years ago, after exposure To mould, I Was treated initially with chemo, now steroids, oxygen and have tried immunosuppressant's but have had bad reactions to the later. Is there anyone else with this condition who may have some advice or knowledge about treatments? Many thanks

[budleigh4]

I have chronic extrinsic allergic alveolitis, I have inhaled spores into both lungs which could be mould

I am on steroids and Cyclothosimide fo the last two years

Do you think we have something in common

Regards mike

[illuminate in reply to budleigh4]

HI Mike, I have copd , and use inhalers,  but have always tried to make the point with no avail, that I was perfectly ok. till I slept in a very damp bedroom , which at the time didnt know about spore, and thats when my brathless etc. started and I have never heard of the name of your diagnosis . just wondered if thats what I have. as I strongly beleive that is what I have really.  my walking has been the most affected.. do you have any symptons that I could relate to?  regards MO X

[budleigh4 in reply to illuminate]

Mine could have been caused by mould as I lived in a Victorian house with some black mould on the walls, but may be other causes

My walking and balance have been badly effected by the steroids

And now coming down on steroids by one mom per month

May be worth looking at my condition on the Internet or check with your specialist

I have always found the the British lung foundation website very good

And often speak to them

Keep me informed

Mike

[lizapizza in reply to illuminate]

Hello, This week I have just come out of hospital with pneumonia and so they dont know whats caused it yet, but just reading your posts made me realize over 10 yrs ago now I used to sleep in a very moldy room with all kinds of mold and I thought then i may have problems in the future!!!! And now I have and I think it's due to this!!! So I was wondering how you were both getting on? If you were better and cured by now? Many thanks Liza

[Lyn5]

Hi, Mike , thanks for your reply,sorry it's taken so long to answer you, I went down with a chest infection from hell.  It does sound as if we have similar conditions. I was initially given chemo but then I was moved on to immunosuppressant's, all of which have given me side effects, that I couldn't live with.  One of the latest suggestions has been retuximab apparently this is usually used for rheumatoid arthritis and we will need funding for it. Have you heard of this?  Hope your well, 

Regards Lyn