New member with Eaa/hypersensitive pneumonitis 😕😕😕

[Mrsjam]

Hi,, I've had this condition since last November, diagnosed at a&e in February .

treated with steroids.

It seem an uncommon condition, does anybody have much knowledge about it..

Thanks

[accygirl]

Hi Mrsjam

I have been suffering with Hypersensitivity pneumonitis (HP) just over two years now.

The condition is caused by an abnormal immune response to a usually harmless substance that is inhaled called an antigen. Common antigens are mold, fungus, birds but there are over 200 known antigens that can trigger this condition in susceptible people.

You are right that there aren't a lot of us around, the estimate is that it affects 1 in 100, 000 people. That said there are several of us on this forum.

You say that it was diagnosed in A&E, are you under the care of a specialist consultant?

The cause of my HP is unclear but could have been caused by feather bedding. I have been on steroids for 8 months now and at the moment they are helping. My lung function has stabilised and I can lead a normal life. My life is not to the same level it was before I became ill as I used to do a lot of hill and mountain walking.

How is HP affecting you?

Jackie

[Mrsjam in reply to accygirl]

Hi accygirl, Sorry to hear you have it as well, I am under a consultant, seeing him Thursday for my latest ct results. Hoping for good news.

They says mine is from birds as I had 2 parrots at the time, although the test for avian proteins came back negative..I now have no parrots...

Still not that good although much improved, it always makes me worry that it's maybe something else.. There seems to be no test available to determine cause.

The steroids are my problem at the mo, causing terrible mood swings,

I can cope with the weight gain but the moods trouble me a lot.

How do you find yours?

[accygirl in reply to Mrsjam]

Mood wise I have never had any problems but have certainly had quite a few of the side effects. When I was on the higher dose I was only sleeping for 3 hrs a night but I was fine and didn't need longer so I used the time to do other things I had a huge moon face which was difficult to look at but as the dose has reduced it's gone away.

I'm quite pragmatic where steroids are concerned as I realise that there aren't many options and they have made me better when I feared that I would not improve.

I've mostly maintained a positive attitude to my treatment and tried to do what I can to help myself. For example I quickly realised that while I couldn't change the way the steroids affected my body I could control the amount of food I ate so I restricted my calorie intake to 1400 calories a day to reduce the risk of putting on large amounts of weight. It wasn't easy but it was within my control to do that.

Like you I find it frustrating that there is no definitive test. My avian precipitin test only showed positive for budgies and I've never had a budgie or bird of any kind in my life so who knows. That's one of the biggest mysteries with this condition. I now get very reluctant to go in to new environments as I don't know where is safe for me anymore and I don't want to be ill.

[Mrsjam in reply to accygirl]

That's how I feel, very wary, I would like someone to say its this, just to put my mind at ease.

It is quite a complicated condition, I find myself reading up on it all the time. 😀

[accygirl in reply to Mrsjam]

I was like that for the first year. I exhausted all the info on Google and Google scholar but quickly realised that there wasn't a lot of information out there and a lot of it was the same information regurgitated.

Now I have alerts set up for any new articles but I get less than one alert a month on the subject.

The reality is that we have an orphan disease that no one is overly interested in.

The good thing is that I attend a specialist clinic at a research hospital so whenever they ask me to donate tissue or blood samples for research I'm usually more than happy to help.

[Chris3]

Hi there!

I was diagnosed 5 years ago and the steroids really helped stabilise me. The mood swings will settle and they will reduce your dosage over time. Hang on in there!

[Mrsjam in reply to Chris3]

Hi chris3, how are you now, are you still on medication. They only wanted me to have the steroids for 6 months, that was 6 months ago. I'm only on 5mg at the mo, I'm hoping to come off it, but I don't feel my breathing is too goo at the mo. Seeing my consultant Thursday so fingers are crossed.

It nice to speak with other people with similar problems !😀

[Chris3]

I've been on steroids for nearly 5 years now. I've been as low as 2mg but it's had to go up at times to tackle flare ups.

They tried something else but it did not agree with me. Quite attached to my prednisolone. I have a love/hate relationship with it.

I find anything below 10mg or 7.5 and my moods etc are better as is weigh. 5 is good!

Good luck on Thursday.

Chris

[Mrsjam]

Hi all, saw my consultant Thursday, my ct scan looks normal now, my breathing test wasn't so good??

4 more wks on steroids, then we see what happens, I'm hoping as I followed there instructions " re homing my beloved parrots and staying away from birds", that will be it.

Is this how it is with other sufferers?.

[Andrea001]

Hi Mrsjam

I was diagnosed with the condition in 2008 and unfortunately we have never been able to establish the cause only treat the symptoms. Hopefully they have found your cause but your comment below concerns me a little.

“They says mine is from birds as I had 2 parrots at the time, although the test for avian proteins came back negative..I now have no parrots...”

I worry that they say it was your parrots because they don’t know what else it could be. Like if you have cancer they blame it on smoking and don’t look any further.

Hopefully there diagnosis is correct and you are not exposed anymore. If your breathing gets worse however get straight back on to them and don’t wait for your next appointment.

Prednisolone is your friend and you may end up on it long term. If you do then insist you go on calcium supplement tablets. I also had a once a week tablet of Risedronate. This will protect your bones from osteoporosis. The Risedronate can be replaced though by a quick infusion every year instead. As soon as I was put on the calcium my hunger cravings stopped and weight gain was no longer an issue.

Because no one seems to know much about the condition you really need to take control and listen to your body. Your lungs do not repair themselves and getting chest infections is one of your biggest enemies. Seek treatment early (usually raising your steroid dose for a short period and a course of antibiotics). I had an emergency set of antibiotics and steroids in the cupboard so I could start them immediately before waiting for a doctor’s appointment.

I have had the condition for a long time now so happy to share what I have learned over the years.

[Mrsjam]

Thanks for the reply.

I have been on calcium, and alendronic acid to protect my bones. I saw the consultant last thurs. my ct results were good, but breathing test show no improvement, I'm on steroids 2.5mg for another 4 wks then wait to see what happens. I asked him again about another test, he said there were none. I hope it was the birds as they now have been re homed, to the distress of my husband and me, it broke our hearts.

Sorry to hear you've had it that long, I was hoping it would just go and never return.

How do you manage, does it affect you ay to day?.

Best wishes

[Andrea001 in reply to Mrsjam]

I do hope yours just goes away too and never returns. As for me I don't wish to scare anybody but here his a brief summary. I am extremely lucky and have my life back after a double lung transplant a few months ago. Before that life was different and I was on oxygen 24/7 after one chest infection too many. I have just got myself a bicycle and looking forward to getting fit again. So life is good again.