Hi, I'm new to this so here goes. I have Extrinsic Allergic Alveolitis with no antigen. I've had it 10 years. Plus other complications.

[Clairelouise68]

I've been on pred all that time without a break also taking azathioprine 200mgs daily. I am under the Royal Brompton in London. I live in Cornwall so it's not easy seeing them. I have Cushings and have gained nearly ten stones over the years. I am presently on 30mgs of pred a day due to what they think is colitis. But! I am feeling very depressed and anxious I'm never like this normally and have accepted that poop happens. My sats are 90-95 on air. My diabetes reflects the facts that the steriods are up! I'm so tired all the time I have sleep apnoea but my hubby tells me I'm snoring again! Which c

Shows something isn't right. Should I just leave it the weekend and see or shall I go docs tomorrow I'm very fed up. Sorry for the long post.

[fran58]

Hi ClaireLouise68, sorry to hear that you are feeling down. I was diagnosed with EEA 5 years ago, they never got to the bottom of why I took this condition but like you it changed my life overnight I am no longer fit to work and have been in hospital 6 times since diagnosis, I have never met anyone with this condition and can feel isolated at times. Have you ever been to pulmonary Rehab Classes, I am due to start them next week after my recent stay in hospital with pneumonia. I see you posted this 9 hours ago so you may have already contacted your doctor. Hope you are having a better day today.

[Andrea001]

Hi to Claire and Fran, hands up me too. I was diagnosed with EAA in 2008 and we have no idea of the cause. So its good to meet you both as talking to other people with the condition can only help. Very little information or help seems to be available to help us get to the bottom of our problem either. I shall share my drug list. prednisolone, Calcichew-d3, Acetylcteine 600mg 3 times a day and risedronate sodium once a week. I too gained weight but as soon as a different consultant put me on Calcichew to protect me from Oesteoporosis my weight came back down.

Claire I recommend you get yourself off to the doctor if you haven't done so already, I too didn't feel great recently (its all flared up again) the Steroids are not doing there job anymore so I have just started a twelve week course of Cyclophosamide. that is 6 sessions of a very low dose of chemo via intravenous drip. They are using it as an immune suppressant to get things back to where they should be.

Hope you feel better soon

[fran58 in reply to Andrea001]

Hi Andrea, thanks you for mail and sharing your treatment list. I had been on steroids and azathioprine, however I had a problem with the azathioprine and my blood count and they stopped all the treatment immediately, I was pretty poorly for the best part of last year and lost the 5 stones in weight which I had gained with the medication, they had discussed putting me on oxygen ay home but no decision has been finalised, my stats often drop to 65 at bedtime after I climb the stairs and generally around 87/91, I do get tired etc. Once again Andrea thank you for sharing your experience it is much appreciated. Frances

[Andrea001 in reply to fran58]

Hi Fran. they tried me on Azathioprine. I lasted about a week before they took me off. terrible pains in my stomach. My stats are like yours but I haven't dropped that low knowingly and my pulse is often 110 or higher. Take care of yourself and I will post up if the chemo treatment is effective or not. Unfortunately we both know we are never going to get any lung damage repaired and all we can do is try and stop it getting worse. I have a portable oxygen and if you are dropping that low sounds like you should. I was asked by the consultant when was the last time I had seen the oxygen nurse for an assessment. When I said never she looked alarmed and booked me up an appointment. I believe the weather is an important factor and wet damp days are the worst.

[Jayenne]

Well - hands up, here's another EEA culprit! What a frustrating lung disease this is. I was diagnosed in 2013 afer a VATS Lung Biopsy. Had been ill with irritating dry cough since 2010, then had BC - chemo and radiotherapy - and that's when the actual breathing problems started! I have deteriorated since, and in July last year was put on Prednisolone 80mg and gradually now down to 15mg. It has helped although lots of problems with breathing, 4 steps at the most before having to stop, cough not there so much now, but yes, had the weight gain - only put on a stone so far in almost 12 months, but have the bloated middle and moon face - hate it! I also can no longer work, and life has changed so much. Can't pinpoint what mine is down to - I did have budgies throughout childhood and until 6 years ago, but they say it's difficult to say exactly what the cause is.

Claire, I hope that you get things sorted - I can't imagine how you've coped all this time, and the thought for me of maybe putting on even more weight horrifies me. People don't recognise me and I have to say who I am now!! I do hope you get the anxiety and depression sorted. There are many on here that can offer support and help.

Take care

Jean

[docmel]

Follow your instincts, if you don't feel right something is wrong....best of luck!

[Clairelouise68 in reply to docmel]

Hi, thanks for the message. I've just been reading your posts you say about pain I have constant pain and use slow release morphine for this with oramorph for break thro' pain. I'm on oxygen and need this on exertion. I have the bruised feeling you talk about I've never heard anyone relate this so I'm quite intrigued. The medics don't get it. It would be lovely to see Someone that has a clue. They are fantastic at the Royal Brompton but trying to get the local hospital to understand is difficult. Speaking to people about it is quite a revelation.

[docmel in reply to Clairelouise68]

I am on tramadol currently...my doctors here in the US don't understand the pain either...like my diaphragm feels like a rubber band about ready to break pulled as tight as it can be...or the fact that it feels like i need to pop my sternum like a knuckle that hasn't been popped in forever...or the wrap around pain in my rib cage that feels like I'm wearing a really tight corset or something crushing.... sometimes it feels like just a pressure from the inside to the out....I don't know how long I will have left on this earth but I will spend it trying to teach my doctors...