Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and Lung Disease?

Thank you Brad...
As much as I have read as well...and it's only been 6 1-2 yrs for me I only read about lung issues but not exactly what. I found one link..I need to find it again..it mentioned fibrosis from the lung disease and AS. He pulled the nurses from the front desk and the back to explain to them my disease. He told them AS causes us to work so much harder at breathing thats why my tests were so high. He said the lung disease is associated with AS and although rare he had seen it in his practice.

I've been lucky to have some good docs these last few years and plan on holding on to this one. He has a dry sense of humor and yet is very comforting. He listened to all of my history. He wrote many notes and reviewed and had me sit in his office and then come back again with xrays and talk to me again. I was with him from 830 till 1230. I'm glad I have health insurance...otherwise it would have been about 650.00 not including xrays. No wonder I kept hearing from pals on how expensive the allergy doc visits were! Copay 20.00...priceless for me today!

It was a little comforting to hear that although the disease has progressed to cause this..it was bad but not terrible as he put it. I'm glad I got a doc that realized what exactly was happening or I could have kept on with allergy med after allergy med and my lungs getting worse. After having pneumonia, pleurisy and bronchitis so many times these last couple years..it explains alot.

Sorry to ramble Brad...Its' good to have you all here to explain to. Other than my hubby and kiddos...it's all greek to my friends and family.

Take care my friend...

Hi Linc,

My ribs, sternum and spine are are fused into one big constricting band around my body. I am unable to take and hold a big breath, I can't blow out a candle a foot away and there's no way I can blow up a balloon without passing out. However, since I can't run more than several inches at a time and I have given up Birthday cakes and balloons, I can honestly say it has not bothered me much at all. Except sneezing. I used to hold a sneeze in so it wouldn't bother people but now, that's not an option and people down the block can hear me let loose with one. If I tried to hold it in, I think I would shatter like fine china. Weird how AS works, eh? I offered my spine when I broke L-5 but it didn't seem to want it. It drifted all over, making life miserable but never settling in on one spot long enough the interrupt normal movement. Then, after 20 years it decides to screw up my Birthday.

I found one link..I need to find it again..it mentioned fibrosis

Interesting. My mother's sister (who I believe is HLA B27 positive - her daughter has AS) was recently diagnosed with fibrosing alveolitis, an autoimmune disease of the lungs for which she has been prescribed steroids. But I have never seen it suggested that the two diseases were related.

Hi Buggie,... I'm so sorry to read that you're suffering this complication from AS, tho I suppose it's a relief to know exactly what is going on, that it isn't allergies after all you've been through... hopefully now they'll be able to provide you with a better more effective treatment.

Found 2 links with info on this:

Lung findings on high-resolution computed tomography in idiopathic ankylosing spondylitis--correlation with clinical findings, pulmonary function testing and plain radiography

and

Thoracic high resolution computed tomography in patients with ankylosing spondylitis and without respiratory symptoms

My warmest hugs to you Angie
mig

Hi Buggie

A CPAP is machine used for a breathing disorder called Sleep Apnea. My severe sleep apnea is caused by a flap in my esophagus that closes when I relax, and stops me from breathing. Also I have a narrowing airway called COPD (Chronic Pulmonary disease which in in the mild stage - doctor believes my COPD it will advance into the moderate range in the future). At that stage I will have to use a BiPAP another machine which helps further to keep the airway open.

You sound like you have Rhinitis in your sinus(s) which is very much like allergies. You will find you're very sensitive to a lot of things which will send you into asthma attacks. It's worse when you really don't know what is causing the problem, not like an allergy to something.



Hugs

Gerri

Mel, these are great articles. Thanks for posting them. I had some pulmonary testing done a couple of years ago because I had the steel band effect happening around my ribcage. The results (other than I had about 4 more allergies than I did 12 years ago) were that my body is not absorbing the oxygen properly, so I don't have enough in my bloodstream. The 'solution' was Nasonex - a nasal spray steroid. Other than the fact that I feared becoming another Felix Unger (he of the sinus clearing morning honks and constant nasal spray use), the steroids gave me headaches. I stopped using it.

Anyway, not saying that has anything to do with AS & Lung Disease, except I'm wondering how many of us have been told our bodies don't absorb the oxygen efficiently or some other seemingly mild and unrelated pulmonary thing.

I thought I'd add these articles to the lexicon on lung disease:

PubMed
PubMed Again
Oxford Journals
Annals of Rheumatic Diseases

10 pages of articles came up when I searched. These are from the first page. Seems there's been a fair bit of research done on this, but of course, unless it occurs we would never even know it's a risk. I guess we can't know everything.

Many hugs,

Ah Angie, poor Gianna. And poor you. I know exactly how she feels. Just the thought of having to give up my babies makes tears come to my eyes.

You are right. Animals are way smarter than we give them credit for. They pick up on stuff we don't even know we're sending out.

I googled chronic sinusitis for you and this article from The Mayo Clinic gives a very good explanation. Not so much hay fever as constant plugged nose.

Love and hugs,

Hi Buggy,

What an awful thing to come up with! When you mentioned lung disease and AS in the same sentence, my interest jumped. I Googled "AS Lung Disease" and found several references. this is one:

Quote:

---

Department of Medicine, University of the Witwatersrand, Johannesburg, South Africa.

The development of apical pulmonary fibrosis and bullous disease is a rare but well recognized extra-articular manifestation of ankylosing spondylitis (AS). The fibrobullous disease is usually asymptomatic and diagnosed at an incidental radiological examination. When symptoms do develop, they are usually due to superimposed colonization or infection by bacteria, fungi or mycobacteria. Only six cases of non-tuberculous mycobacterial superinfection in AS have been reported. We report a patient with AS and progressive apical fibrobullous disease in whom Mycobacterium scrofulaceum was repeatedly cultured over a 12-year period.

PMID: 3166923 [PubMed - indexed for MEDLINE]

---

Seems rather rare. I might be a victim as well because I present the same symptoms....and have for years. I just figured that it was the results of my ribs and sturnum being fused which lead to a radical change in my breathing. The two very well may be connected. It was very scary at first but I have lived with it for about 15 years with no real problems. I have never felt the need to seek medical help but, thanks to your post, I will mention it to my doctor when I have my annual checkup in a couple years

Does this mean that I was maybe misdiagnosed with asthma? I have pulmonary hypertension which is usually caused by constriction problems in the small blood vessels in the lungs, but no one has done a CT of my lungs. Should I request this be done or would it be a waste of time? Right now, the pulmonary hypertension is of unknown cause and is getting worse since three years ago.

hi valerie...good to hear from you...

i am glad to hear that you have found a doc you like. thats always so important. i hope with time he will be able to give you some of the answers you are looking for as well.

my former [retired now] rheumy mentioned about the lung problems years ago. but i didnt think things could advance this fast even though i have no serious fusing. it really scared me hearing those words but i felt better knowing it was a doc who knew what he was talking about...i hope you never have to hear those words my friend...it is a bit nervewrecking to say the very least... take care...