Hypersebsitivity Pneumonitis.......which drugs

[cazza34]

Hello I was diagnosed in Nov 2015 which hypersensivity pneumonitis. This has progressed from occasional chest infections for which I took prednisone and antibiotics to now being on ambultory oxygen. My sats keep dropping hence the oxygen, I have been on this for 4 months now and it helps a lot with less breathlessness thus less coughing. However I feel I'm fine for a while ...or maybe coping better then I can't cope I'm using a lot of oxygen at home just to alleviate my symptoms. I've had numerous chest infections and at least once a month had a course of pred and antibiotics. I'm going to see my consultant on Wednesday and would like to start taking a drug that slows down the scarring I have on.my lungs. Does anyone have any advice or drug names. I'm 58 don't smoke fairly active, self employed...which is getting harder. Any advice welcome.

[Hidden]

Hi cazza

Sorry to hear of your difficulties, sounds like you should be on maintenance dose of steroids and ABs but the very best person to advise you will be your consultant.

Wishing you a good visit with your consultant on Wednesday and be sure to tell him or her what you have said here so they are fully aware of your current situation with the oxygen and monthly use of pred and ABs.

Hope you get something sorted to improve the situation.

Best wishes Bkin

[Hidden]

The nurses on the BLF helpline can advise you further on what questions or queries to put to your consultant, perhaps give them a call.

blf.org.uk/support-for-you/...

[goat-lady in reply to Hidden]

Hi I hope you are feeling ok . I have chronic HP but not as troublesome as yours (at the moment). I don't think there are any anti fibrotics for HP - only for Idiopathic pulmonary fibrosis. Speak to a Consultant- only they can prescribe the 2 drugs. Good luck.

[cazza34 in reply to goat-lady]

Hello ive seen my consultant and going down a different path. Going on methotrexate intravenously for 3 x sessions then a tablet plus 15mg prednisolone and see how that goes. Hopefully this will mean my lungs are less inflamed.....the drugs I.mentioned before are wrong these are for fibrosis. Fingers crossed these work better. How long have you had HP? Are you on medication or oxygen?

[goat-lady in reply to cazza34]

V glad u have an action plan- really hope it helps. I have tried prednisolone with azothioprine ( an immunosuppressive like methotrexate) with disastrous results. Sadly my liver can't tolerate it. But my lungs did improve! I have had it for 2yrs now. Was in hospital in Feb with bird flu- really hope I can avoid hospital this winter. Blood oxygen is ok at rest but drops when I move about- don't need ambulatory oxygen at moment. Really looking forward to pulmonary rehab- am hoping that provides some coping hints. Do u know what your allergen is? No idea what mine is. Best wishes.

[cazza34 in reply to goat-lady]

Hi I've been on the Ambulatory oxygen for 4 months it does help with breathlessness and cough. My sats drop lots if i go upstairs or inclines...its veen as low as 64.

No, no idea how this started I went on holiday to Thailand and Japan in nov 2015 and got illl...I had been to flower markets ( I'm a florist) but have no idea what allergen. I've been tested at hospital and seems I'm allergic to lots...cats digs moulds pollen etc....but no definate thing. I thought it was my job although been a florist for 15 years. No symptoms prior to 2015. What was your side effects that affected your liver? Positive pants though...I still work..run my own business....I've just learnt to cope with it ....

[goat-lady in reply to cazza34]

Thanks for that info- I have taken early retirement but am hoping to do a few things from home- one of which may be growing dahlias etc for "farm gate" type sales. Sadly I lack the liver enzymes to cope with azothioprine - probably rules out a lung transplant to. I'm guessing u may be picking up bugs from your customers. I tried working for a charity last year but stopped as I kept getting infections- none since the flu in Feb- fingers crossed. A quandary for you and your business- but if u can get the inflammation under control it may settle down. I have also moved off my property for a year just in case something there is triggering the HP. Year is up in April. I am waiting for a CT scan to c how the fibrosis is doing. Really hope u feel better soon. M

[cazza34 in reply to goat-lady]

Hello and thanks for your reply....how are your lungs since you come off the drug that affected your liver? What drugs if any are you on now. Do you live in the UK or USA......and if USA what climate...questions questions....

[goat-lady]

Went to the GP yesterday for routine appt-discovered I have a respiratory infection - no wonder I've been feeling ruff! I don't get many warning symptoms - seem to go from ok to An E in a flash. The predisolone and azothioprine did ok for the lungs but have left me with hepatitis- apparently my liver will recover-eventually. I only take predisolone e as a short acute treatment. Consultant is not happy about this but we have a compromise which has worked well over the summer. I take an Inhaled steroid and 2 bronchodolators with carbosytine- low dose. I take supplements - that the Consultant dismisses!! Am in UK- rural herefordshire.

[cazza34 in reply to goat-lady]

Hmm similar for me...I feel ok then feel crap sometimes within 48 hours....the oxygen chap came recently and said "ooh you sound like you have a chest Infection" ...and guess what after trip to docs.....I did. I thought how come I didn't see this. I need to as I need to prevent more scarring on.my lungs.. I had 2 years of very little symptoms just breathless with hills and stairs. But 2017 I've had more infections. I work from a studio at home and only do weddings and workshops....so limit public contact. I also take Qvar inhaled steriods but don't think it does much.

[goat-lady]

Perhaps it a feature of HP- poor spotting of illnesses. The second time I went to AnE -I was visiting a patient and felt ill so went to An E. Just wanted pain killers and perhaps ambulatory oxygen organized . Consultant came -said if I left An E I would probably die- oops! One way I spot illness now is my peak flow- if it flat lines around 140- 160 l/min for more than 4/5 days I know there is problem brewing. I'm not sure about my steroid inhaler either. I'll be interested to hear how u get on with the new drug regime. Are u in the UK to?

[cazza34 in reply to goat-lady]

Hi yes I'm in Leicester in the East Midlands....I now check my sats daily or twice daily think seems to be a bit of an indicator as the number drops if I'm I'll or going in that direction. I bought it from Amazon for £20