Ankylosis Spondylitis

My rheumatologist is almost certain that I have AS. She doesn't know I recently did the cat scan for my abdomen that showed my SI joints to be Sclerotic so I will have to let her know. The humira definitely brought my inflammation all the way down to a 2 which is great but it has not taken away my pain yet. I've been on it for almost 3 months.

Squishmellows was definitely a cute name lol

Your story sounds exactly like mine. Basically, my chiropractor said there’s not much more he could do as others have said to me.

I finally went to a rheumatologist- have positive HLA-B27 and sacroiliac pain and an MRI showing arthritis. He put me on Humira like you and started last week. I’m hoping it will help me.

Btw. Also, have Uveitis.

me too \

So far the Humira has not stopped my pain. Next Friday will be my 6th injection. Maybe it takes time to work. I get really stiff in my hip if I sit to long & get up. It will take me a minute to be able to walk. I'm only 46 but feel like 90 literally lol. If I stand for a long period my hip hurts & left lower back hurts. It hurts just to sit or lay. I'm gonna ask my rheumatologist if she will test me for that gene. She believes i have Ankylosis Spondylitis & when I researched SI joints being Sclerotic it said AS and I believe I read AS can cause Uveitis as well. I can't see a chiropractor because it's to much out of pocket for me. I see my rheumatologist again on the 8th & see what she thinks about my cat scan so I can maybe get a definite diagnosis.

The Humira nurse said, give it at least 3 to 4 months. But everyone reacts differently??…??? Also, yes you can have your rheumatologist give you a script for blood work to test genetic marker HLA B27. Maybe discuss other meds that you can try.

Yes the nurse told me the same...just sucks it takes so long. And if it doesn't help then maybe I'll need to try something else. I will ask if she will do the HLA B27 when I go back.

After having uveitis it was my ophthalmologist who tested me for the HLA-B27 gene and I was postive. I have all the symptoms of sjogrens and am seeing the tomorrow.

I feel so sorry for you. I had a friend with this disease. On top of her meds she took more anti-inflammatories the pain was so great. When checked she had 50% kidney function left but by that time her disks in her neck were fused and she had no movement. Please don't take extra medications.

It took 20 years to get my diagnosis of ankylosing spondylitis. I suffered a long time believing it was osteoporosis and no one doctor I saw until I met a very clever dermatologist. She diagnosed my psoriasis, but because of pain in my lower back and spine she tested me for a specific gene, through a lab test called
HLA – B 27
It’s true not all people that have a positive. HLAB 27 will have an autoimmune disease. However 90% who test positive will likely develop an autoimmune disease.
My dermatologist put me on Otezla to help my psoriasis and now she was pretty sure I had psoriatic arthritis.
She referred me to rheumatology who took over a year to see me due to re-staffing after retirements.
The first temporary rheumatologist there had me get an x-ray and said there’s nothing wrong with me. That’s it!? It’s absurd to be treated that way when something is clearly wrong. He was an arrogant jerk.
I let the office know and they apologize and said they have had some complaints regarding that particular doctor. They asked if I would see the other rheumatologist, I agreed. I knew clearly there was something wrong, much more so than osteoporosis. I had thought that was killing me., At least until I saw an endocrinologist who said osteoporosis doesn’t hurt. That’s when I knew I had to find out what was going on with me, I was less and less able to do anything and hurt.
The next rheumatologist I saw said not all AS diagnosis show up on an x-ray alone. Some show up with MRI.
The MRI clearly showed both hips, inflamed and with edema. I was actually relieved and freaked at the same time. Relieved because it could now be treated but freaked out by the pain and progression all these years of being untreated. If you have back pain, even if it’s between your shoulders and the joints and it continues even with massage or an ibuprofen, and continues don’t wait 20 years to test further. Do yourself a favor and get a referral to a rheumatologist.
My shoulder pain in my 30s was terrible. I had to get massage therapy for years. I thought it was due to a whiplash from a carnival ride, believe it or not in my early 30s. By the time I was in my mid 40s I was diagnosed with full osteoporosis.
All the years as my back continued to stiffen and ache it was easy to just blame it on osteoporosis, well that’s what all the other doctors did until I saw an endocrinologist who said it did not cause pain. I was now 61 and in a lot of pain.
I started out with Humira, which I didn’t tolerate well. I was switched to Cosentyx, which seemed to help but within a year it did not seem to have the same affect. My rheumatologist told me to go off of it, and we would figure out something else, but by the time we did, he was leaving the practice and could only prescribe me two months worth of Embrel because I was out of state for the winter. I have been off of treatment for six months and in tons of pain. My insurance wouldn’t pay for out of state doctors and although I thought about paying out of pocket, I could not get a referral or a recommendation for a good rheumatologist in the area. I had to wait until I got back home to see a new rheumatologist that was now accepting patients. I had heard he was very good, a caring and knowledgeable rheumatologist!I’m so thankful!
I just saw him yesterday, l am almost 65 years old. He had read my chart, MRIs, bloodwork, etc.
He was disgusted by the treatment l received from the other rheumatologist office in our area. He saw all of it in the chart notes.
He said he was glad I finally found him and he would take care of me.
They’ve referred me to a chiropractor and PT. I just had a bunch of labs taken, they called in a prescription for a metro dose pack (steroid treatment) for 5days due to my current pain and inflammation. There’s a new biologic injection called Bimzelx, he is getting prior authorization through my insurance. I just pray they will approve it or if not I will get whatever the best one is for me with my family history of cancer. Anyway, this is a long story and probably not an exact order as I had written it out earlier and it disappeared lol so now I’m redoing it because I want you to know don’t wait 20+ years to get treatment. Advocate for yourself, you have to at times because most Doctors think they know everything, and clearly many do not know much. You.
I wish you the best of luck with doctors and your diagnosis.