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Ankylosing spondylitis: anyone else?

Posted by kelsey1 @kelsey1, Aug 25, 2011

i have been suffeing with muscle and and joint pain for longer than i care to remember. it started out with fibromyalgia and now they thonks its either rheumatoid arthritis or ankylosing spondolytis but herein lies the problem i have all the symptoms but nothing is conclusive. the pain continues to worsen and i don't know what to do has anyone had similar problems?

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 26, 2024
In reply to @terrez "Regarding ankylosis spondylitis, and psoriatic arthritis. It sounds like you have been through a lot! I..." + (show)
@terrez

Regarding ankylosis spondylitis, and psoriatic arthritis.
It sounds like you have been through a lot! I was diagnosed osteoporosis at age 46 as well as psoriasis.
Later, I was diagnosed with psoriatic arthritis and referred to rheumatology. After blood-work showed l was HLA-B27 positive and MRI was in my SI joints. I had edema with inflammation.
The rheumatologist diagnosis was ankylosing spondylitis. I too have dry eye disease, and am supposed to be using xiidra, Which I totally hate. It seems to make my eyes dryer, redder and my psoriasis flare in the corners of my eyes.
I started out on Humira, which I did not tolerate well, headaches etc not to mention lots of cancer in my family so l switched to Cosentyx. I’ve been using Cosentyx 150 ml injections one monthly for over a year and my back pain has only intensified. My rheumatologist is trying to get The pre-authorization for Taltz.
I understand it’s similar to Cosentyx, only some people don’t do well on Cosentyx can do well on Taltz.
My diagnosis has come at age 61 so I have not had proper treatment to prevent the progression of this condition. Every day is painful. I try to stretch, I try to walk, l love dancing 💃 but it hurts! I don’t understand why so painful if it’s good for you? I know it’s important to stay moving, but the pain is intense. The only pain medication I’m taking is meloxicam 15 mg. Daily.
Here’s my question, My friends are going to take golf ⛳️ 101 lessons. It’s once a week for five weeks. I don’t play golf, but I would love to know how and have the knowledge of the game. If I could Learn the basics and play for fun occasionally is this going to benefit my condition or is it going to cause further damage to my spine?
if anyone knows the answer to this question I would love some advice as lessons are supposed to start tomorrow. The other question I have…. I would like to know is how you’re doing if you’re on Taltz for ankylosing spondylitis and psoriatic arthritis.

Thank you!

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@terrez Hello and welcome to Connect. A physical therapist would be a good resource to ask if golf would be a safe activity for you. My PT has talked about rehabbing golf injuries because of the spine twisting and knee issues for golfers. I don't have ankylosis spondylitis, but would sharp twisting movements cause pain?

REPLY
Terrez | @terrez | Dec 1, 2024

It’s very difficult to get diagnosed With ankle losing spondylitis apparently. If any of your care team does figure it out it’s like a miracle.
No one wants this diagnosis but at least if found early it can be treated to slow down the progression of the disease. Otherwise found later in life it can be excruciating as the disease tries to fuse your spine.
After all the years of suffering with neck, knotted shoulder pain and low back pain, assuming it was due to osteoporosis. I developed psoriasis, actually the dermatologist said dermatitis. Later a new dermatologist figured out it wasn’t dermatitis but psoriasis. I didn’t know there was a difference but there is.
Due to my continued pain she was pretty sure I had psoriatic arthritis and tested for the HLA B27 jene which was positive. She stated treatment with Otezla and referred me to rheumatology. It took a year to get in but once seen, they do several tests to determine the disease.
Labs, X-rays and MRI of your SI joints.
The dr said psoriatic arthritis shows up as one side of hip joints being inflamed but if both sides are inflamed and edema, it’s Ankylosing spondylitis.
Those are the steps to diagnosis. Hopefully you find out sooner than later as l have a lot of progression and have multiple sites as it attacks not just the spine but the ligaments and joints along the spine.
Which is why l had terrible pain in between my shoulders.
Thoracic scoliosis as well, blah blah blah, sick of all of it.
I am seeing a chiropractor who does heat and EMF ( like a strong tens machine) and a tool that sounds like a vibrating drill on my joints along my spine, which really helps. I use a small vibrating heat pad that is cordless 😍 love it. I use soft pillows and seat pads, a foot stool to try to keep from crossing my legs 😥l take meloxicam 15 mg every day as l do not want to get addicted to oxycodone or any other opioid. Currently waiting for Taltz to be approved by insurance after being on Cosentyx for a year with out any benefit other than some help for the psoriasis.

Anyone on Taltz for AS??? What’s your experience with Taltz??

Thanks for any input or feedback, l do appreciate it in advance 🫥😶‍🌫️

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