Spondylitis Association of America Forums General Discussion Men Only Message Board Just Diagnosed!

Dear Inpain and Cunfused,

I believe anytime you are not sure about a doctors treatment or diagnosis, there is nothing wrong with a second opinion. Humira from what I hear is very expensive and has some side affects. After all, we usually know our bodies pretty well. I know that not everyone with the HLA-b27 gene do not hav Seronegative Spondylorathrapies. (AS and others fall in that category) However about 80% of patients with sypmtoms and that have been diagnosed, have the gene.

I am learning a lot about it my self over the last couple weeks. I am with you on the pain, and sometimes I find myself in denial too. But nobody ever had a perfect body, and never will.

I would say a second opinion can't hurt.

Familyman

InPain&Confused, I would second familyman's advice on going and getting a second opinion that never hurts. I've personally only been diagnoised with AS since August of this year, but I think I've had it since 85 when I was in the Army. With AS, we usually have flare up which last form a few days, to a few weeks to months. In looking back at the last twenty years I honestly think that I've had at least one or two flares a year. Only in the last year has my AS really gotten worse. Everytime I think I'm better I start hurting again. Many of the symptoms you listed sound a lot like what many have written in the Symptoms post in the general questions section.

In your post you stated that your granddad had something similar and that could make the genetic link. My mom's dad had back problems for years and now looking back I think it could have been AS, but he died 20 years ago and there is no one to ask about it now.

I think that this board has been one of the best things that I have found in dealing with AS. My Rhuemy gave me some information about AS, but this board has given me more. My primary doc even stated that she thought at 42 I was too young to have AS imagine that. One of the biggest things about having AS to me is coming to grips with it and hoping that it doesn't get as bad as some on this board. Hang in there, put your faith and trust in God and keep moving forward.

I've been on Humira for about two months and its helps. It doesn't take away all of the pain, but it has helped with the fatigue. It is very expensive if you don't have good insurance. I'm fortunate that I'm a veteran and they are covering the cost of it for me. I believe that both Humira and Enbrel have programs to help pay the cost if needed. If questions arise post about it on here or the main board and people can give you answers.

My main adivice to you is even though we may never meet anyone else on this board we are connected by this and will always be there for each other. Hang in there and I hope it gets better for you. Bobby

thank you Bobby and familyman. i feel much better after reading your msgs. thank you again

Hello,

Official diagnosis after a bunch of testing, is SpA. With moderate inflamation in Spine, Hips and mild in wrists, knees and feet. They are starting me out on Darvon-n for pain, Diclofenac, Sulfasalizine. DR. says if these don't help control pain within a few months, then he will step it up. Anybody taken these drugs? Do they/have they worked for you? Let me know?

Thanks,

I've been on Sulfasalizine since August, 2 pills three times a day. I'm also on Sulindac and ran out the other day. One of the side effects of sulfasalizine is head aches and believe I starting having them. My Doc refilled my sulindac and no more head aches and most days are good. My doc also put me on Humira and between all of the above and tramadol I'm able to function pretty well. Hope all goes well.

I have just been diagnosed...
I think I'm going to get a 2nd opinion though.

I've had back pain for 5 months every morning at 6am..for some reason the pain doesn't kick in until around 7 hours into sleep. I get out of bed..and it subsides in about 10 mins. I'm on Athrosec it helps a little..but not a lot.

I had xrays...my general Dr. didn't see anything..but the specialist mumbled something about my xrays that 'i didn't even need to look at them because..." of the the other testing he did.

I think i'm of average flexibility. But he did measurements and just said..'yeah you have AS'

I have no pain ANYWHERE, other than my back...it goes only as low as the top of my hip bones (love handles area)...and sometimes the pain can travel up to just about 'chest height' in the back. That's it.
Your thoughts?

Zepp, I think that one thing that you will find about AS is that it effects us all a little differently. I think if you read my post above that I've had AS for over 20 years, but didn't know about until about a year ago. My pain has always been more in my hips and until recently its moved to my lower back. I hope you find these forums helpful. It nice to have a place to come where you can come to for answers. Bobby

It's funny that there has been no history of it in my family, and I have a large extended family..heart disease and cancer have gotten some of the older generation...but no arthritis or pain along those lines.

He only tested my flexibility, therefore I don't understand how the could know.
I'm 6'1, 29yrs old, and working on losing my gut i gained over the last year. I could never really touch my toes growing up without some hamstring strain. He measured my fingertips 18cm from the floor. It seemed the only problem was when lying on the bed, my legs could bend into my chest far enough (yet there was no pain when he tried this- i could have been resisting because when I stretch for workouts, I can easily pull my leg right into my chest. my friend that can't even bend as much as me...so I don't understand how this is an indicator...how can flexibility be an indicator unless tests were done prior to spondylitis to show a decrease in flexibility.

The only pain I get is around 6am during sleep. It makes me toss and turn from that point on unless I get out of bed. The NSAIDs don't help either. I'm on 100mg a day...I take 1 in the morning and 1 at night.

I'm getting a 2nd opinion, either way to be sure. If I have it, I have it..and have to deal I guess.

Do the NSAIDs stop fusing?...or is it just for pain? Will the fusing happen regardless of what medication is taken? What is the average progression of this disease?

Are there other conditions that mimic the symptoms? I don't think anything showed up in the x-ray. The specialist that diagnosed me seemed to be in a rush to leave as well. I was the last patient for the day....reception had left once i registered and he didn't take time to review the x-rays with me or anything...
It seemed as though he was working late.

I'm going for a massage next week..maybe acupuncture as well.

Zepp, have they checked you for HLA-B27. My Rhuemy looked at my x-rays and told me that he was 90% percent sure that I had AS, but that the genetic test for HLA would comfirm it. Before I saw my Rhuemy they had tested me for about everything and had even done a nuclear bone scan and it hadn't shown anything. He even stated that he could see the AS from my regular x-rays and didn't know why no one else had seen it. If you feel the need to you might get another opinion. The NSAIDS really only help with the pain. I think that the TNF's can slow down AS, but there is no cure yet. I'm not sure about if there are other conditions that might mimic AS. Take care and feel free to ask any questions you have. I don't know much, but there are others who can really give you good advice. Bobby

No they didn't do any blood tests.
just xrays. I'm only 5 months into this. Never had any symptoms before. Just had back pain for the last 5 months.
If i'm only 5 months in, what could possibly show up on an xray?