1. < Autoimmune Diseases

Ankylosis Spondylitis

Posted by candybeason45 @candybeason45, Nov 18, 2023

About 4 months ago I had blood work done with my primary Dr and my sed rate was 32 & he recommended I go see a rheumatologist. I went to see the one I had before and she believed I may have Ankylosis Spondylitis but wasn't 100% sure. I hurt in my hips so bad for the last 3 yrs & no one could ever find the reason why. I just had a CT scan done & it showed Multilevel degenerative disc disease & SI joints are Sclerotic. When I researched that it said ankylosis Spondylitis so I'm wondering if she was right! I see her again in a few weeks but when she suspected me of having it she started me on Humira injections. I have such severe pain in my hips, mostly left side and lower left back pain that stops me in my tracks. Anyone else have Ankylosis Spondylitis

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candybeason45 | @candybeason45 | Nov 21, 2023
In reply to @phxjana "I had back pain for years, and in 2005 and 2007, had both hips replaced. Back..." + (show)
@phxjana

I had back pain for years, and in 2005 and 2007, had both hips replaced. Back was showing degenerative disc disease, but no further recommendations except exercise and chiropractor, along with diclofinac and stomach meds for that issue. Fast forward to 2022, when trying on a new chiropractor, he told me I needed to see a rheumatologist. Ta Da! You have AS and your back and neck are partially fused! I appreciate having a diagnosis, but wish that other doctors would have listened to me and possibly made the referral earlier.
Started Humira last week to hopefully stop the progression of this disease. Got myself a new friend too, to help me sleep.

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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.

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candybeason45 | @candybeason45 | Nov 21, 2023
In reply to @becsbuddy "@phxjana Welcome to the autoimmune discussion group. I see that you’ve been on Connect for sometime,..." + (show)
@becsbuddy

@phxjana Welcome to the autoimmune discussion group. I see that you’ve been on Connect for sometime, but this is your first time posting. And your little friend made me laugh! I wonder whoever came up with squishmallos and gave them such great names? They are adorable.
How long have you been ‘defrosting’ in AZ?

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Squishmellows was definitely a cute name lol

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wlc222 | @wlc222 | Nov 21, 2023
In reply to @phxjana "I had back pain for years, and in 2005 and 2007, had both hips replaced. Back..." + (show)
@phxjana

I had back pain for years, and in 2005 and 2007, had both hips replaced. Back was showing degenerative disc disease, but no further recommendations except exercise and chiropractor, along with diclofinac and stomach meds for that issue. Fast forward to 2022, when trying on a new chiropractor, he told me I needed to see a rheumatologist. Ta Da! You have AS and your back and neck are partially fused! I appreciate having a diagnosis, but wish that other doctors would have listened to me and possibly made the referral earlier.
Started Humira last week to hopefully stop the progression of this disease. Got myself a new friend too, to help me sleep.

Jump to this post

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.

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1 reply
pollysparrow | @pollysparrow | Nov 21, 2023
In reply to @candybeason45 "I will definitely keep you in my prayers! I would hate to have to go thru..." + (show)
@candybeason45

I will definitely keep you in my prayers! I would hate to have to go thru all that. My left hip hurts so bad and if I'm not moving I get stuff when I get up and its hard to move for a minute. The pain in my lower back on same slide hurts most days sometimes all day like yesterday. I just want some relief.

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me too \

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candybeason45 | @candybeason45 | Nov 24, 2023
In reply to @wlc222 "Your story sounds exactly like mine. Basically, my chiropractor said there’s not much more he could..." + (show)
@wlc222

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.

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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.

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1 reply
wlc222 | @wlc222 | Nov 25, 2023
In reply to @candybeason45 "So far the Humira has not stopped my pain. Next Friday will be my 6th injection...." + (show)
@candybeason45

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.

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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.

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1 reply
candybeason45 | @candybeason45 | Nov 25, 2023
In reply to @wlc222 "The Humira nurse said, give it at least 3 to 4 months. But everyone reacts differently??…???..." + (show)
@wlc222

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.

Jump to this post

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.

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