Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How old?

I has mysterious bouts of pain when I was nine. Pain came to my SI and stayed there and in my left hip for 6 months straight at age 13.

By 16 my left hip was fused motionless. Diagnosis occurred somewhere between 13 and 16.

Now I'm weeks shy of 46 and still fighting despite the damage. There are better med's out there now. You got diagnosed young so that should help.

Kick around the ideas and med's discussed here that you and your Doc believe that will work for you and maybe you do much better than most.

At 20 away in college with a tattered left hip and daily pains I felt pretty lousy some days too. You're not alone and if you have a good friend or two you'll get by. On the lousy days when no one understands some here. Some of the folks here are pretty helpful. They've helped me and I'm pretty much beyond help most days.

Best wishes.

Hey Angie,
Welcome to the board. I am glad that you found us.

Personally, I wasn't dx'd until I was 40. Yep living proof of the old adage that things go downhill after 40. I went to a rheumy for a totally unrelated problem and walked out with AS. I'm thinking I must have caught it while I was there.. According to the so called experts I should be too old to have developed it. I think almost everyone here can poke a hole in some part of the "Ideal Model" of the AS patient. So you can't really pigeon hole who develops AS and who doesn't. Its a sneaky little critter.

We have several young folks on the board, along with parents, friends, and other family of ASers. Keep an eye on the Party page and maybe you can make it to a get together somewhere and meet some honest to goodness AS Kickers. We might not be the most graceful bunch to ever throw a shin dig, but we have a good time, and compare and share lots of information about our journeys with AS.

Welcome Aboard.
Keep Kickin'AS
Chris

I was 21 when I was diagnosed, but showed signs of it for 3-5 years.

Thank you so much for all the responses! I really appreciate it. I have tried countless medications. When I was first diagnosed, they put me on celebrex. After about a year, I felt like I became immune to it. It just wasn't working any more. I tried a few other oral meds (including vioxx (sp) which was a bad story all together) and finally was put on a combination of sulfasalazine and plaquenol (sp) which worked fairly well. Then I tried Enbrel but it gave me HUGE bruises on my thighs and stomach that would last for weeks. I am now on Remicade (500mg) which is the highest dosage I can be on for my weight. I do that once a month and take sulfasalazine twice a day. I feel like a guinea pig sometimes. Nothing seems to work as well as I would like. Maybe my expectations are too high. It is just so frustrating, being so young, ready to start a new life of my own, and I can't even get out of bed in the morning by myself. When I'm not working, I have to use a freaking cane! I'm 20. I should be out dancing, enjoying life. I don't know. I hate to throw myself a pity party but I feel like ya'll are the only people that can somewhat understand what I am going through. Again, thank you so much for all the responses and personal stories. I really really appreciate it. Much love!
- Angie

Hey Angie,

Glad you found us, and welcome to KA. You are definitely not alone here--there are a few other folks your age, and I'm sure you'll hear from some of them in this thread. As for myself, I was diagnosed pretty early too, at age 18. Well, let me qualify that--I was diagnosed with RA at that age, switched to AS about 6-7 years later, but it was AS all along, so I always consider myself to have been 18 when I first started showing symptoms.

Even that I wonder about. As a child, I remember many nights where I would get out of bed and tell my mom that my legs hurt so bad they were making me cry. At the time, she simply told me I was going through growing pains as my bones grew, which of course made sense to me. Now, both of us wonder if what I was really feeling was the first manifestations of the disease, although we'll never really know for sure.

Hope you find some folks your age you can talk to. I know that before I found KA, I felt very isolated, as I was the only person I knew with this oh-so-fun disease (a feeling many here felt at one time). Now I know I'm part of a wonderful worldwide family of people who understand exactly what I'm feeling and thinking when it comes to AS.

Brad

The vioxx made me horribly sick to my stomache whenever I took it and it gave me heart burn. It never really controlled any of my symptoms either. At first, my doc told me to try only taking it in the middle of a meal so there is food before and after taking it. It still didn't work. I was on it for about 4 months. I never got edema though.

Angie,

I was about 42 when I was first dx'd about 6 yrs ago. Have been having symptoms since I was about 25 or so. It took the initial onset of iritis to get my diagnosis.
I really hope you can get the help you need. This is NOT a fun problem to have.
My prayers go out to you,

Glenn

thanks for the information on the vioxx. yeh, they always say to take medicine that could bother the stomach on a full stomach, but for me, it doesn't really matter.

sue

Wow, sorry to hear that Amsher. I wish you could have better news. Just keep trying for better treatment, drugs, etc. I was dx in 1985 so have had it for over 20 years. Was on remicade for a year, no oral meds helped me either. Now I'm on a infusion drug called orencia. My rheumy told me remicade is 80% mouse ingredient. Was having problems with sinuses. So switched me to the latter which is 100% human ingredient. Keep on asking..doctors dont know this disease as little as we do. Its different for everyone and all drugs do not work for the same results. But keep on listening, asking, and trying until your body feels good again. Then figure out how to manage it at that level. Hope you have great success against this ugly disease. Also, since you've just been diagnosed, check out the low/no startch diet. Some people have found some sucess for those who are just starting out. Flip