Diagnosing HLA B27 (-) Ankylosing Spondylitis?
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I am at what is hopefully the tail-end of diagnosing AS (I say this from a "seeking effective pain-management and avoiding permanent spine damage" perspective) and my rheumatologist mentioned testing for HLA B27, saying that while the outcome will not necessarily influence the end diagnosis, it will play a large role. I am HLA B27(-).
I recently read a paper that indicated a stronger presence of HLA B27(-) AS for women with adult onset.
For those who are HLA B27(-), what was your experience going through diagnosis? What led to your diagnosis in the absence of the HLA B27 gene?
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michele80892 WestCoaster
Posted
I was diagnosed very late and had bamboo like growths all along my spine on X ray. I finally got on Humira and I am doing much better.
WestCoaster michele80892
Posted
And you're HLA B27 negative?
That's fantastic that you're finally finding relief!
Kracker55 WestCoaster
Posted
HI i am HLA B27-
I am 52 years old i started having symptoms around 41. i started played slow pitch softball after having not been very athletic for some years. Right away i pulled my left hamstring twice. then tore muscles in my abdomen (sports hernia) got that fixed still had pain found my left hip was chewing up my labrum so had that repaired. had a operation to repair two toen ligaments in my ankle and remove a bone chip. ruptured my left plantar facsia. had many boughts with tight achilles and hamstring tendonopathy. after 8 -9 years i finally had an mri of my si joints and low and behold my left side is severe enthesitis. my si joints ache constantly i get cramps in my calves everyday. i have had both knees meniscus repaired and my right knee has been a mess since with swelling aching and bakers cyst. it took 8-9 years and i slowly am getting worse enbrel worked but i lost a ton of weight that scared me so i stopped it big mistake. i am now on cosentyx and it is not working as well. enbrel did not work second time around. from what i have read if it starts in the si joints you will have it the worst and to be honest i would say that is true only percocet and muscle relaxers help the pain. i sleep very poorly and my Pm DR wont let me have anxiety or sleep meds to help which is insane. i tried medical Marijuana but they only allowed me a month trail it failed so back to opioids. CBD contains a very small trace of THC dont let them fool you as it made me ffail a urine teat and almost lost my meds and DR. i have two years to go to full retirement benefits at work (25 years) but a long way to go till i can collect SS. Disability pays half if what i make so i cant afford that route. work tried to get me to wuit until i got a lawyer. i have two wonderful daughters and a fantastic wife or i would be on disability or dead by now. i pray for you that you get a good doctor and understanding people around you.