Anyone Else with Extrinsic Allergic Alveolitis (EAA)??

[Jayenne]

Hello folks. I'm new on here and finding reading through Questions and Blogs really helpful, and know that I'm not alone!

I just wondered if there are any of you out there that also suffer from EAA, and how you cope with your symptoms, etc.

I have always had a niggling cough, clearing my throat, for many years and diagnosed with mild asthma 14 years ago. In the last 10 years I've had increased chest infections and viral infections affecting my chest. In September 2011 I was diagnosed with Breast Cancer (I beat it!!) and as is normal prior to the surgery, I had a chest xray done where they queried marks on my lungs with TB. (never had it). A visit to the Respiratory Consultant followed (2 months later) where he took my history and this was to be followed with CT Scan. However, whilst hospitalised during and because of Chemo treatment, I became extremely short of breath for several days. They did the CT scan while there and I was treated for Aspergillus Fungal Infection. I'm not really sure anyone knew what was really wrong!

To cut a long story short, this happened again 4 weeks later after my 2nd chemo session and the shortness of breath was even worse. They explained that the chemo was 'waking' something in my lungs and that it would 'probably' settle. I continued to take Pulmicourt and Brycanil which I've taken for the mild asthma, and returned for follow up with the respiratory Consultant in August when I returned from a 3 month holiday overseas visiting family.

Another CT scan showed that my lungs were worse (didn't I know it!) although the breathlessness had initially settled around a month after the chemo, I had noticed that I was now getting out of breath walking up the slightest incline. Apparently there was a lot of inflammation in the lungs, and the Consultant was confident that it was in fact EAA. As there was no obvious link to the disease, i.e. keeping birds, farmers lung, and any other obvious reason, he arranged for me to have a VATS Lung Biopsy, which was done in January this year - I had the please of having the chest drain removed only for the lung to collapse again and have to have another tube put in - HELL!!!! plus a further 10 days in hospital!

The surgery confirmed that it is indeed EAA. Another visit to the Consultant followed by Lung Function Test, CT Scan and 6 minute walking test - and in the meantime continued with my puffers. If I had still got my persistent cough, he would have then put me on Steroids (?) but the surgery seemed to have 'removed' the cough!

Almost 4 months after the last visit and tests, I have deteriorated - 'hard' dry coughing spasms to the point where I am almost sick - in fact I fractured a rib the other week through coughing so hard. More breathless than ever, especially on bending forward and returning to upright position, and the other week hyperventilating when exerting myself 'slightly' more than usual. I saw the consultant last week for the results which show that the scarring needs to be slowed down - hence getting worse.

So I am now on Steroids (Prednisolone 5mg x 8 daily). Started them a week ago and although I'm sure all the symptoms/feelings I'm getting are quite normal, it would be good to get some reassurance. I have at times felt quite anxious for no reason - is this a side-effect? The indigestion - well, I'm writing this at 3am due to being woken with horrendous indigestion. I suffer insomnia anyway which is now twice as bad (eyes popping out of my head!)

My life has changed completely in the last 18 months since the shortness of breath started - I was ok before the chemo apart from that darned cough. I was fit and healthy(ish), ran an allotment site and practically lived there, loved it so much. Living alone I did all my own decorating, handy work etc.. and played with my 2 and 4 year old grand-daughters. Now, I can't do any of those things and it's heartbreaking. I have my down days as I'm still trying to come to terms with how this has now affected my life and to accept it. BC was a breeze compared to this...

Sorry for rattling on - but it helps. If anyone else is familiar with this disease, it would be good to hear how you cope.

[Decor]

I'm sorry you are struggling so much although I do not have the same illness as you ,I have emphysema I do understand how hard it is to come to terms with not being able to do all the things you used to take for granted .i feel as though in the last 12 months my life has changed so much .but I found this site and every one here understands exactly how we feel and just reading the blogs or asking advice there is always someone who understands and can help ,we all have different lung problems but they all have one thing in common we can't breath .But if you need support or advice there are plenty of people on here with it in bucket loads . I would also suggest you ring the BLF they have all sorts of people there to help you in all sorts of ways or you just need to vent your frustrations there are plenty of people here more than willing to help if they can .

[Lynne1955]

Hello Jayenne and welcome. What an awful time you have had!

I don't know anything about your condition, I have emphysema, but I would suggest you phone the BLF helpline on Monday and I'm sure one of their nurses can help out. They are very good, as is everyone at the BLF.

The number is 03000 030 555.

Lynne xx

[knitter]

When I am on a high dose of steroids sleeping is difficult...so wired! Indigestion too...I got Gaviscon from the nurse practioner and that helps but you cant take it at the same time of day as the steroids, I swig it down in the middle of the night.

I have had problems with Bricanyl in the past...have you asked your gp about this.

How often to you have to take it?

[Chris3]

Jayenne, I too have have EAA also known as Hypersensitivity Pneumonitis. It started with a cough and like you it was a chest x ray for something else that showed up the problem. I had a CT scan and VATS which confirmed the diagnosis in 2010. They were unable to identify the culprit but we are now pretty sure it was in my place of work. I started on the same dose of steroids as you and gradually reduced to 5 mg. it was increased when I had a flare up but am back down to 15 mg and hope to reduce some more next week. They really helped. I don't like taking them but needs must! It's good to find someone with the same problem.

Chris

[Toci]

I have emphysema and had a spell in hospital last year when my breathing worsened (never found out why). The doctor tried to help by giving me Bricanyl via nebuliser and my breathing rapidly deteriorated. The nurse said that I should never take it again and made a note in my records. May be worth while you checking this out with your docs?

Also, the prednisolone, yes it can have a side effect of causing you to feel anxious or depressed. My consultant said to take it unless the mood alteration became a problem, then it should not be taken. I had to stop taking it.

I hope you feel better and get some relief soon.

[ginachron]

I have emphysema too and take the usual steroids, etc., and also many painkillers at the moment for a bad shoulder. There are probably many others here who'll know more about the drug, but I was prescribed Omeprazole to counteract my indigestion/heartburn (just one per day) which have sorted my stomach. I used to take Gaviscon but have found the Omeprazole works better for me. Hope you sort things out. Best wishes, Gina x

[gerry1950]

Jayenne After CT scan and lung biopsy In dec09 I was found to have hypersensitivity pneumonitis. It was until sept 10 when I applied for industrial injury benefit the DWP called it EAA.I think you will find when your steroids are reduced you will sleep better I have oxygen which I use at night and as and when required at present I am on mycophenolate mofetil and alendronic acid my breathlessness. I also have a wheelchair which I seem to be using more often.I can't do anything in the house my worst not been able to shower myself. I lot of things I took for granted like walking and washing we all need a good rant

[Hidden]

Welcome Jayenne,

You have been through a rough time, I hope things will start to improve for you soon.

The steroids do have some nasty side affects and hopefully your doctor or the pharmacist can advise you how to counteract those with some thing that is compatible with the medicines you are already taking. Insomnia is common with prednisolone, I was advised to take in the morning to try and help counteract that but I still find they interrupt sleep patterns.

As suggested already, give the BLF helpline a call Monday- Friday between 10am to 6pm

All good wishes to you.

BC

[Jayenne]

Thank you all for your very helpful comments and advice. I'll give the helpline a call too. I suppose it's just a matter of getting used to the medication and the effects it can cause. xygen was mentioned at my appointment the other week, but when I see the consultant again in August, maybe the steroids will have helped.

It's a new world to me - not only the disease, etc but the struggle that goes with it - not working! I hate being in the clasps of the Government to make sure that I can eat and have a roof over my head - it's a battlefield out there to try and get what you should be entitled to isn't it. Trying to prove you're as ill as you are when applying for DLA or at a (horrendous) ATOS assessment is a nightmare. I appealed my last assessment and won and expect to be called for another shortly - this time I will be armed with reports. It's a stress none of us here need isn't it. I also expect to be dismissed from my job shortly as I haven't worked since September 2011, and well, we've exhausted all avenues now for me to return to work and it's just not going to happen.

At least we're alive. Wishing you all well and thanks very much once more

Jean

[Lillytan]

Hi, I had a vat lung biopsy in August, just got the results and I have what we expected to find..hypersensitivity pneumonitis woo hoo for me! My consultant mentioned steroids and I told him No! I took them before after brain surgery and am not willing to go on them again due to the awful side effects...weight gain, sleepless, depression, etc. I was told to go back to my consultant in four months time, so i feel at quite a Loss as what to do, where to go from here...but I can't take the steroids and apparently that is all that is on offer in the way of medication and support! I guess we will never know what has caused this but I wish you the Best of Luck x T

[Andrea001]

Hi Jayenne and everyone else on this trail

I have EAA Diagnosed in 2007 and am no closer to finding out the cause. I have recently had flare up and waiting to see the consultant. Since 2007 I have been on steroids, started on the 40mg and gradually reduced to 7.5mg. They ideally would like you at 5mg due to long term side effects. If they can’t get you down they will try and put you on immune suppressant drugs. The ones they tried me on (sorry can’t remember the name) didn’t agree with me so they just continued on with the steroids. I am expecting after this flare up that they will try a different immune suppressant.

As far as the side effects from steroids, breathing is far more important. Make sure you are given calcium supplement and the once a week Risedronate Sodium (helps calcium stick to bones). You don’t want to find out you have Osteoporosis before they put you on the supplement. Ask for a bone density test.

At first I was told just to eat a high calcium diet but all I did was make me balloon in weight and be hungry. As soon as I went on calcium supplement the hunger and weight subsided, obviously my body was getting what it needed. It also seemed to get rid of the acid burn.

I was also told to take the steroids in the morning and not before bed otherwise you will have trouble sleeping.

I am also on Acetylcyseine (NAC) which you may wish to look up.

For me I am interested in trying to find the cause, my condition is certainly worse on wet damp days.

I was wondering if there was a university and/or group of people interested in taking their daily oxygen stats, Peak flow measurements, what the weathers doing, and other indicators (not thought of yet) and logging them to see if there are any patterns/commonalities. Quite frankly just going every six months to have a lung function test isn’t helping me or anyone else with the condition.