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

Hello to all my wonderful friends and new members...
Sorry I havent been around as much.....read over a few posts but the health has had better days...

I went in today to see my asthma/allergy/immunologist doc. Needless to say I was hoping to come out with the answers for my allergies and not lung disease.

The nurse stuck some long swabs up my honker for the allergy testing. Then the fun began....not.

This doctor was so wonderful. He knew all about AS. You see I kept failing miserably with the spirometer [breathing] test. I finally passed. He was shocked. I felt like a little scientific experiment. He said normal breathing is at about 100-109%. Mine was at 155 and the last one which is usually much less was at 165%. He believes I have not been treated properly and have Ankylosing Spondylitis lung disease. He said with a regular person you expand your lungs and ribs easily..with a person with AS our ribs push out faster so we can hurry up and get the breath out. So my breathing is much stronger but it does not sustain. I could barely get it past 3 1/2 seconds. I finally made it after 5 tries to 6 seconds!

Of course I was the bizarre one. I thought surely he'd find my allergy. They pricked my arm about 60 times...and I am not allergic to ONE single thing. Not cats, dog, cedar, ...not even HAMSTERS! AND I only had one cell that was an infectious one. I forgot what he called it. He was showing me under the microscope. Remarkably my sinus xrays came out normal he said. He was so stunned he had the nurses come in so he could explain my disease and they were shocked. I thought "cant I just get a better allergy med or something?" So he is upping my protonix to 80 mg...I take it 1 hr before breakfast and 1 hr before dinner. He wants to keep me on the advair and singulaire. He thinks the singulaire is masking my asthma right now. I told him I had gone to see a pulmonologist. Well he had a degree that said I THINK immunology rheumatology. He said he did his internship in it so he knew all about AS.

I see him in 2 months. He wishes I had been sent his way much sooner. I wish I had too. Does anyone here suffer from lung disease due to the AS monster? I have a knot in my throat. I have had so many problems breathing and it scares the heck out of me. I want to be around for my children and not breathing right is something I just cant ignore like my other AS joint pains.
Any input would be appreciated...I am trying to keep my chin up but I never thought at 38 I'd have the AS monster on my back so much...
Buggy

Ah hon, I wish it were otherwise for you. You deserve a break. I wish I were there so I could help pick up some of your load.

In the meantime, I saw a couple of good things:

1. Maybe now you'll get some proper treatment, since this guy knows what he's about.
2. You can keep the animals!!!

I hope this eases for you soon.

Warm hugs,

Hi Buggie

I know how you feel about your many breathing problems. I am not sure if my breathing problems have anything to do with my AS. I carry my inhalers, Flonase, my CPAP everywhere I go.

I know how scary it is to crave air.

I am glad you don't have allergies, that cause even more problems with your breathing.

Do you use a CPAP or BiPAP to help you breath at night? Since using a CPAP my bronchial asthma is not near as bad. Only when my allergies act up do I have problems or if my son brings a cold home from school.

I have had major breathing problems all my life they are getting progressively worse. When I have doubts how lucky I am, I think of my sister(who will be 50 this year) who has much more serious breathing problems than I, and may have to have a lung transplant. She has RA and Lupus.

Your doctor sounds like a very confident and knowledgeable with AS. You are in good hands.

Many hugs are going your way.






Take care

Gerri

HI Buggy

Finally a doctor that should be able to help you.. I just started going to a new rheumy that I really like . Of course he did not give me the answers that I wanted but he didn't mention anything about AS lung disease. I dont have to see him until august I hope that he doesn't spring that on me.. I do have trouble taking deep breaths etc but I never thought that lung disease could be a problem..
But I am glad that you don't have allergies although that would be the better news
s

Wow, Buggie, that is some big news to receive, no doubt. As many years as I've been reading up on AS and hanging out with this bunch here at KA, that's the first time I've heard of something called AS lung disease. It does sound like you have found an excellent doctor who really knows what he's doing, and that alone is worth its weight in gold. I hope that finding him helps offset the fear that you feel right now, as it really does sound like he will be able to help you. Best of luck, my friend.

Brad

Hi,
Congrats on not finding out your not allergic to anything, because I am allergic to pets, grass, weed, pollen, cotton wood and a dozen other things and it makes my Asthma a problem, which is even worse if you have AS breathing complications.
I haven't heard of AS Lung Disease either, but it sort of sounds like my occasional hyperventillating problem. Most of the time my breathing is shallow, but I also hyperventilate after doing certain activities. It's sounds like your doctor knows about AS and breathing complications.

Take Care,
James.

hi buggie, Sorry to hear about your latest AS monster rearing its ugly head. And Ive been wondering how you are. Havent been on much. I still havent been dxed but almost given up trying. I have breathing problems but they always say its from smoking. But I have just found out I have sleep apnea and were cpap but hate it. I breath really shallow and feel alot of it is because my ribcage is fused so bad. One of those indicaters the docs say I have but hey no AS for me. I just got my other knee replaced and doc is talkin about back surgery. Last september I had 3 tumors removed from my sinuses, thank GOD it was not cancer. But the tumors grew into bones so the 16th of next month I have to have bones scraped to see if it keeps them away, otherwise they will keep growing. But at least in knowing what the problem is with your lungs maybe they wont keep deteriorating with the rite treatment. Well as usual I go on and on. Take care, Connie

No breath for the Bugster?? I know AS affects the ribcage and sternum, and in flares I would have difficulty taking deep breaths without pain, but you're saying there is "AS lung disease"?

Would that be fusion of the ribcage, thus preventing proper breathing??

Breathe, Buggie, Breathe...hang in there, bring the rock to the docs...you will be around for your kids and we will be emailing in our ASkickin' old age...

Peace
Linc

Hi Kat...
Thanks for listening..
I know my dog breathed a HUGE sigh of relief. Animals are so smart..she had been so quiet lately...just tip toe'ing around me. She knew something was wrong. She and the CAT would glare at each other like are you leaving? It was terrible.

On the sad side the doc does think the cat should go b/c of Sofie's asthma. I did find a potential new owner with a 6 yr old daughter like Sofie who wants a cat. She is just up the street as well. The heartbreaking part? Gianna is absolultely torn apart. She took it very hard when her beta fish passed away a few months ago and although a self proclaimed dog lover she fell in love with her. She broke down crying yesterday. Gianna rarely cries. She said she couldnt give her up. She was her little confidante. It tore my heart up hearing her. But she also knows her sisters asthma is terrible at times.

On the plus I am relieved I have no allergies..chronic sinusitis is what he said instead. I think that's hayfever right? He's a sharp doctor and i wish I had crossed paths with him long ago. As long as I can keep kickin' then i'll keep fightin' this rotten AS monster...thanks for helping me along the way...
your pal always..buggie

Geri...
Reading your post encouraged me to keep up the fight and count my blessings.
I guess it just frightened me when he said lung disease. It just sunk right into my heart. I always worry about my little ones and figure if I can keep up the fight then I can be around for them longer. Arthur is my love and comforts me but I still worry as a mom.

If you dont mind me asking..what is a CPAP or BiPAP please? I carry the albuterol emergency inhaler, my advaire they upped to 250 which helps much better and the singulaire. I use the albuterol breathing treatments at night. They push me into a coughing frenzy but eventually I am able to clear my airway to breathe again for the night or in least a bit. Doc thinks the singulaire is masking the asthma a bit. He said even though my breathing is not of an asthmatic the emergency room xrays showed up twice of my hyperinflated lungs due to asthma ..it just happens that my sinusitis and asthma decided to behave today.

To crave air..your words are perfect. I told my doc that when I cant breathe I feel like just pushing my mouth open more with my hands hoping and praying something will come out. It is scary indeed. He believed me. He happens to be asthmatic as well.

I hope for the best for your sister...as well as you Geri...thank you for the hugs...it's been a rough few months but am relieved there IS an answer to what has been happening to me. Take care my friend...