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

I saw my cardiologist today about the results of my echocardiograph and hypertension diagnosis. She is sending me for a high resolution CT scan, pulmonary function test and stress test. Believes the AS has caused changes in the vasculature of my lungs (possibly fibrosis). If it turns out she is right, then she said I need to be treated aggressively by a pulmonologist. If not, then she will do a right-side catherization and test various meds while doing it to see if it relieves the hypertension. My symptoms were swollen ankles, shortness of breathe, sweating alot while exercising, waking at night having trouble breathing, fatigue after exercising. So if you have any of these symptoms, you need to see a pulmonologist or cardiologist quickly.

Hi Buggy,

I have had to deal with fusing ribs for the last 55 years but the Doctors have never referred to it as an AS disease. Also, the limitations of my hips, legs, neck and most of my spine is because of the constant increasing of calfication being spread everywhere..

Even my heart is part of the AS damage and the Mitral valve is getting coated with the same level of calfication as is the rest of my body. So far, AS has not seemed to damage my eyes.

I do hate this damned AS and often wonder whether I can continue to deal with it. At the age of 70, my ability to fight AS is diminishing. Perhaps if I just hurl naughty words at AS, it will all go away?

OldGeorge

Buggy,

Did they just do scratch testing on you for your allergies or did they do any intradermals where they inject a small amount of certain serums under the skin to make a bubble? I skin test people everyday using the scratch method on people who come out negative but when we use a default intradermal test where I then inject certain things they we may be suspicious of (like the animals or the pollens around your house and always dust mites and molds) then they tend to light up like a Christmas tree. They react finally because it is done a bit deeper under the skin. Just curious how they tested you. Also, do you use your albuterol just by inhaler or by nebulizer too?

Hugs,
Cristina

hi merlin...
i am sorry to hear of the lung issues as well. what exactly is involved in the pulmonary function testing if you dont mind me asking?

i went in for the high resolution ct scan. the tech was great but my shoulders are so sore from having to put them over my head. the high resolution scan is supposed to be the best choice from what i have read and what the docs have explained to me as far as picking up changes in our lungs. i see my pulmonologist on tuesday. i am a bit wary since he didnt notice any of these things when i first saw him and my immunologist was very knowledgeable about it. either way i have my letter from the immunologist and info my rheumy gave me to explain to the pulmonologist. i am very nervous and worried but i am trying to keep as upbeat as i can. i'd break like a twig right now but it wont change things so i best try to be strong.

my symptoms were waking up gasping for air. up until last week even speaking would exhaust me. i would have to whisper alot because i was simply out of breath. scary stuff. please be careful and take care of yourself...my stepdad had the hypertension but unlike yourself he ignored it and had a heartattack. he didnt even realize it. that night it happened he was trying to sleep and sweating profusely. he felt pressure but he said it wasnt terribly painful. he walked himself into ER and they were shocked. he expected to hear he had heartburn or coming down with a bug.

i will keep those symptoms in mind my friend..thank you...i will keep you posted as well....this disease threw me for a big loop these last few months. hang in there!

hello my friend...

the lung disease is seperate from the ribs fusing. in my case i do not have fused ribs. i have constant inflammation in my ribs and terrible pain where my lower ribs and spine meet for about 4 yrs now. that is also the right lung that hurts when my asthma acts up real bad. the lung disease is a result from the ribs being inflammed and having to push harder to get a breathe out thus my breathing tests are so high. i went in for the high resolution ct scan and see the pulmonologist on tuesday and my rheumy. i hope to get some answers. i can deal with the AS pains. i despise them but i have learned to deal with them on a day to day basis even though there are days i want to scream but beat up my pillows instead while art tries to comfort. you have fought this battle much longer so i'm sure i can manage one day at a time.

last years xrays showed calcification in my ligaments up and down my spine but the new rheumy said it was a soft call. then i started remicade and it helped for awhile. i am sorry to hear about the heart problems george. i hope to never have that problem. i too have been able to avoid eye problems. no iritis or uveitis..touch wood.

go ahead and hurl the words at AS...i do. lol. i am ashamed to admit it ..but i do. in the mornings when its just art and myself...i sometimes will hold him ...probably harder than i should...since he winces..lol...and i mumble bad bad words to AS. art asked me the other day if i eat with that mouth. after a few minutes it passes...pain isnt leaving so it's out of my system the frustration and i march on. got 3 wee ones i have to care for and i cant give up. not now. not ever ...

take care my friend...

Bugs,

William has just been through lung finction testing to find out why he gets so many chest infections. He has no asthma no allergies except he had quite a reaction to hystamine which is a control and his lung capacity was 25% above his age group height average........


I know we get a fibrosis and colitis can also scar your lungs, I started smoking about 6 years ago and since then have never had a further astma attack or chest infection, I'm not recopmmending that as an option but it defies normal logic.


David

hola cristina...
so so so wonderful to hear from another ka pal!!

it wasnt a scratch test...they poked me with these little needles. she said it was nothing a 7yr old couldnt handle...ha!! try that about 52 times jabbing you with these little pop up needles that had the stuff in it and see if it would hurt HER!! after they did that...they gave me a shot of a histimine. then they would check and wait, check and wait and nothing. you could see the welt clearly from the histamine but my arm was clear. the immunologist said that only confirmed his dx of the lung disease brought on from the AS b/c the allergy medicines werent doing a lick of good for me.

right now i take the advair 250 that helps me ALOT and the albuterol inhaler [emergency one] and the nebulizer. my doc gave me a script for the home machine instead of having to be at the ER every day when it hit me last time. i still had to call 911 last time and they gave me oxygen first then the breathing treatment to get me under control. it's such a horrifying---life passing before your eyes-feeling. i grasp at my mouth somehow hoping to pry it open for more air..yet my windpipe feels like it's being squeezed shut. the GERD makes it so much worse. thats why he doubled the protonix. thats helping thankfully. i still get nervous at night sometimes. i sleep on my side only and with pillows pulled up high.

hope this message finds you well....miss seeing you around lately....your pal..bugsy..

Ladybuggie how did you make out at the pulmonologist's office today? Did they find any damage? I go for my CT scan and pulmonary function testing tomorrow. Let me know how you made out.

Hi Old George,
Hang in there, Just remember I have been dealing with it longer, and I have made the decision not to let it win. I have been so stubborn I refuse the doctors medicine. When I found out that it was a progressive disease, and all they could do for me is give me a bunch of meds that will attack other parts of my body with side effects. I got off of their meds and started taking Aleve as needed. I have also put my trust in God and that seem to work for me.
The last time I saw a Rhumy was back in the early 80's I used to be 5' 3 1/2' tall I am now 5' 0
I will be 74 years old this year. God wiling I plan to be around at least another 15 years.
Hope you will continue to fight this awful disease and not let it win over you.
Take care
Doreen

Yes Buggie I have AS in my lungs, the only way it was found was with a high-resolution computed tomography scan (high res ct scan) both my lungs had large areas of inflammation in them, the bloke doing the scan was a bit shocked to see this. When my GP got the scans me was shocked too, he picked up the phone and called a lung doctor and I was in that afternoon to see him. My lung Doctor said it was from the AS or AS in the lungs as he put it he did say it was very rare. He put me on Imuran and put my Prednisolone back up. I still have a lot of days were its hard to walk to the letter box before i run out of puff .

Adriaan