Hypersensitivity pneumonitis

[Lalasworld]

Hi I'm new to this. Been diagnosed with interstitial lung disease - hypersensitivity pneumonitis is there anyone else on here with it? Peace and love this Christmas 🕊️

[Faballie1]

Hi. I was diagnosed with this 2 years ago, after having been labelled COPD for 4 years. Some of the stuff you can read is either difficult to understand or a bit scary,but my doctors at the Lung Centre at Wythenshawe Hospital are really good at explaining things. Hope it feel ok at the moment. Have a lovely Christmas x

[Lalasworld in reply to Faballie1]

Thank you, at first I was shocked as I'd never smoked, not fitted the criteria of HP ie birds, etc but gaining more knowledge that it can be environmental or just my immune systems response. Steriods helped from day 2 but obviously side effects are an issue but manageable. Fingers crossed once the dose continues to be decreased the symptoms will not return.

Merry Christmas love and peace 🕊

Lala

[Stevennn2003]

Im struggling to get a diagnosis

My dr attempted a hp diagnosis but he is not sure

How did u get diagnosed?

[Lalasworld in reply to Stevennn2003]

Hi Stevennn2003

Merry Christmas.

My GP sent me for an x-ray in Sept after first course of antibiotics hadn't helped what initially was thought to be chest infection. I'd suffered breathlessness pretty much since end Jan but it got worse, I thought it was anxiety (as I also have anxiety disorder, GP kept saying it was ) my SATS were low too and I was breathless doing the slightest thing. X-ray results went through same day, GP called next day told me interstitial lung disease and I saw her next day when sarcoidosis was mentioned. I was told I'd need a CT Scan done within 2 weeks but it took longer, GP had liased with respiratory breathing clinic Consultant and I was referred to them too. Saw Consultant there beg Nov, got breathing tests done, and results of ct scan when he said hypersensitivity pnemonoitis and I was put on prednisolone 40mg a day for 2wks, then 30mg, now 20mg plan is to be on 5mg from March hen next appt, repeat of tests and x-ray, to see if I can come of them and see if symptoms return or not.

Been back for clinic review, my lungs are 50-60 % better than in Nov post steriods. To get a accurate diagnosis he said a ling biopsy would be needed but it's not 100% and carries a 1% risk of being fatal, treatment would be same, so he says it's not needed. However, if I wanted it he'd do it!

I don't want it...

I hope this helps you.

Lala 🕊

[Stevennn2003 in reply to Lalasworld]

Lala

So sorry to hear about your story

It's so similar to mine im 36 never smoked had a chest infection antibiotics .my gp wasn't sure what it is.

I end up going private to royal Brompton in London where i had a x ray and ct .

They said possible hp but again to be sure u need the biopsy.

I was on prednisone which helped now my lungs are around 80% slowly getting better(3 years since all started)

The main problem i have now is coughing up phlegm all the time and catching all the viruses around.

The good part is that im.back to work and manage to get through 8 hours 5 days a week

Be positive its not the end of the world .

There is a very good support group on Facebook where u can find lots of information

Merry Christmas and keep in touch

Stefan

[Faballie1 in reply to Lalasworld]

Hi. I was told the same about biopsy and opted out. However, my consultant offered the option of a bronchoscopy with lung washout, which gave the diagnosis. On all of the hospital letters to my GO the diagnosis is always listed as 'probable HP' as they say many ILDs have very similar symptoms and results.

[meeccles]

Hullo there - yes I have hypersensitivity pneumonitis, the third diagnosis I was given about six months ago following numerous scans, x-rays, etc. I'd never heard of it before, and why I have any sort of lung condition is real mystery - never smoked, never had chest infections, never worked with asbestos. This was something I'd never heard of.

Now I'm on 24/7 oxygen and my daughter is my official carer - thank goodness for her!! A few months ago I developed gross oedema - legs like tree trunks, hands like boxing gloves, blimey...... Fortunately that was sorted out , more or less, by a powerful diuretic, thank goodness - though that has its drawbacks of course.

Anyway, enough about me, like you asked - does anyone else have this pesky condition?? I had my 83rd birthday a few days ago btw.

Margaret

[Lalasworld in reply to meeccles]

Merry Christmas Margaret

Thank you for replying. HP seems to affect all ages from young kids to older people and often linked to occupational hazards, however, it seems for some, like us, it can be either environmental, or from exposure to mold, stagnant water, even feather pillows duvets etc or just the way an individual's immune system responds to breathed in allergens.

Thankfully you're being well cared for by your daughter and I'm glad oxygen is helping you.

Belated birthday wishes along with peace and love to you and your daughter.

Lorraine🕊️

[Hidden]

Take good care of yourself xx

🎄💕 Fran

A link for you: emedicine.medscape.com/arti...

[Lalasworld in reply to Hidden]

Thank you for your reply, kind words and the link and wishing you a happy healthy peaceful 2019 🕊️

[mary1956]

Hi, I have chronic hypersensitivity pneumonitis, diagnosed 4 years ago, following a lung biopsy. I had probably had the condition a while and it has caused irreversible pulmonary fibrosis.

Saying that I was initially treated with IV steroids and chemotherapy. ( Low dose, whiched caused no side effects). I now take 5mg prednisoloneand the immunosuppressant Micophenalate Mofetil. My condition is stable. The fibrosis can’t be reversed, but it has got no worse. The cause of the CHP has never been identified. I try to stay as active as possible, but have had to adjust y life accordingly.

[Lalasworld in reply to mary1956]

Hi mary1956

Just saw your reply now, mot sure how I missed it!

Thanks for replying and sorry mines has been so long.

Hope you are doing ok.

I'm so sorry HP caused you to have IPF but it's great you're keeping as active as possible and you sound very positive.

Take care and thanks again for replying.

Lorraine

[goat-lady]

Hello just came across this. I have HP to. Hope you are all doing ok. I have such a bad reaction with predisolone I am now at a point where I won't take it at all. Anyone else out there struggling with the devil's tactic i.e. predisolone? I take ipatropium, carbosytine at the moment. Azothioprine wrecked my liver- Ho hum.

[Lalasworld in reply to goat-lady]

Hi goat-lady

Thanks for replying. I'm still on prednisolone just 3mg per day now (tapered down from the initial dose.) until I'm back at Lung Clinic in July.

Sorry to hear you had bad reaction to it. I was reluctant to take any meds prior to the diagnosis but by time I started them I couldn't do anything without getting pooped and gasping. I hope the other meds are helping you.

Yes they had side effects, the hardest for me was the sweating and going red in the face, (didn't help I'm menopausal) then the moon face but that's subsided now and sweats have diminished to now I think there just menopausal.

I'm just adjusting to having HP and losing my job at point of diagnosis but I don't think I could work at the moment anyway.

Thank you again for your message.

Lorraine

[goat-lady]

Great to hear from a fellow sufferer. I could cope with the physical side effects but I get really bad psychological effects after about 3 days. Have given it a go for the last 2 half years and am now saying no more. Have lung function test in a few weeks n then Consultant. Will have to see if something "non standard" can be trialled! I have high hopes for the pulmonary rehabilitation course that starts tomorrow. V sorry u lost your job. Although I am v active it has to be strictly at my pace-but am grateful for that! Best wishes M.