Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group HLA-B27 positive

My new rheumy just called me to tell me I am HLA-B27 positive. I'm aware that about 8% of the Caucasian population is positive while only about 0.2% of Caucasians actually have AS.

The rheumy said he didn't have enough evidence to make a diagnosis yet and I agree with him. Here are my symptoms:
1) Mild to moderate SI pain, but MRI showed no inflammation
2) Early morning butt pain
3) Neck pain and stiffness which has improved with PT
4) Mild back pain
5) Back and SI pain do not show an inflammatory pattern, i.e. they feel pretty good in the morning, but get worse with activity
6) Bilateral tendinitis in the following: wrists, elbows, shoulder, Achilles tendon, peroneal tendon (outside of ankle). Also, patellofemoral syndrome and achiness which seems to be in the ligaments of my ankles and feet and wanders around and tends to come and go.
7)I've tried several NSAIDS and none of them give pain relief.
8)I had plantar fasciitis about 10 years ago. It's better, but I can irritate it with certain activities.
9) All of my inflammatory markers are normal-ESR, RF, ANA, etc.
10) He ordered a bunch of other blood work, a complete metabolic profile, etc and everything was normal.

The rheumy suggested that the next time one of my joints flares up with apparent tendinitis, that he would order an immediate MRI to distinguish between inflammatory pain caused by AS and an injury. My peroneal tendons began to act up a week and a half ago, but I've been babying them in the hopes of avoiding full-blown tendinitis in yet another location. The rheumy said that if they go full-blown, he'd order an MRI.

The rheumy said if he could document enthesitis with the MRI, then that would complete a diagnosis of AS. In that case, he felt that a trial of sulfa drugs would be worthwhile, but that right now the risk would not justify the benefits.

I like this rheumy very much. He didn't tell me, "Women don't get AS." Rather, he said,"Women tend to get atypical cases of AS." He answered my questions and concerns quite well and treated me very respectfully. At this point, I think I agree with him that I don't have quite enough evidence for an AS diagnosis and it would be best to hold off on treatments which carry risks for a while longer. I'm willing to watch and wait and see where this goes.

I've decided, however, that the risk of NSD justifies the benefits and I'm getting ready to give it a trial. I've posted my questions about NSD in the NSD forum.

I wanted to throw this out to the kickas community to see if anyone had any comments, suggestions, etc.

Thanks for any help you can give me.


Karen

Glad you found this site. I hope it helps you.

"5) Back and SI pain do not show an inflammatory pattern, i.e. they feel pretty good in the morning, but get worse with activity"

Does your pain increase while you move or just after? Normally exercise decreases the pain for AS sufferers but the inflammation can increase which causes pain later. If the joints are damaged from earlier cycles of inflammation you could have pain all the time.

It looks like your doctor is working well for you. It is a good thing that you are HLA-B27+. If you do have AS it is easier to get a diagnosis. Being negative on all of your labs does not preclude you from having AS. There are also published studies indicating that women too can get AS.

See if cutting back on starch helps.

Good luck,
Tim

Sometimes the pain increases when I move, but often it's after, even the next day when I notice the consequences.

Hmmm...I'll have to think more about the inflammatory nature of my pain. Thanks for asking me the question, Tim.

Karen

Hi Karen, Im new to this so bear with me..Im also HLA B27 pos. Ive had symptoms of neck pain, fatigue, joint pain, low back pain and stiffness..yadda yadda...for about 18 years. Ive been diagnosed with fibromyalgia, DeQuervains disease, Mixed Connective Tissue Disease and whatever...Ive let doctors operate on my wrist to release a "tendon tunneling problem". My grandfather had AS and he walked hunched over for as long as I knew him. Its frustrating to know you have something going on with your immune system but not getting the acknowledgement from the medical community. Ive found that coming here is the best therapy for me..whether by following some good advice or just listening to my friends tell me their stories...hope it provides you some healing too..

Dawn

Dawn,
I'm glad you found kickas also. Even though I'm not entirely convinced myself that I have AS, my journey through the medical system has had enough in common with others here that this is one place I can find understanding.

My current rheumy IS taking me seriously and I agree with him that I don't have quite enough to be sure of an AS diagnosis. My problem seems to be that I keep getting bilateral tendinitis, which is really weird. But if you throw in mild SI pain, history of sciatica, some neck sorenesss and stiffness and HLA-B27 positive, there sure is a lot pointing in the direction of AS.

I also have to add here that I can't really say I'm in pain. My activities are pretty severely limited right now because of all the tendinitis, but my pain levels are rarely above a 2 or 3.

Of course, maybe since my kids are older and because I work only part-time at a very flexible job, I'm able to take care of myself in ways which are impossible for others who have more responsibilities. If I were trying to do more than I currently am, I'm guessing my pain levels would ramp up significantly.

I hope you can get some answers for your medical issues. You are right; it's terribly frustrating not to know and not to be acknowledged.

Thanks for the reply and encouragement.

Karen