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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@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?

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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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@kerrilynn1

I have had joint & muscle pain for as long as I can remember. I had neurosurgery in 1997. I had my spine fused at C5-6, my disc had ruptured and was compressing my spinal cord. I believe this is what triggered my fibromyalgia. I wasn't officially diagnosed with FM until 2001. I also was diagnosed with endometriosis, interstitial cystitis, IBS, dry eyes & mouth(possibly sjogrens syndrome) PTSD, anxiety, depression, & I have sleep issues. In december 2010 I was very sick with a respiratory virus. This triggered chronic fatigue syndrome. In august 2011 I started to have inflammation in my joints. I was tested & told it was seronegative spondyloarthropy and my rheumatologist now is saying it is probably ankylosing spondylitis. I have tried prednisone, but it only helps in high doses. Methotrexate made my hair fall out, caused severe abdominal pain & thrush & staph infections. I was also unable to stay awake. I have had 3 remicade infusions, but they haven't helped. I take vicodin & ccyclobenzaprine dailly. Im considering trying enbrel.

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My years long experience with pain meds included cyclobenzaprine. I began to have reverse effects: instead of relaxing the muscles it caused tightening. I take diazepam 2x daily before bed and during the night. Hopefully it won’t do the same thing. I ended up taking oxycodone from 2010-2012 after a severe disc herniation. It took a few days of flu symptoms to wean off 2 1/2 years. I just can’t tolerate Tramadol so during the day I have a Tylenol regimen and Diclofenac 2x with breakfast and dinner. I don’t want anything in the day to make me sleepy. In 2024 the epidural injection was a failure resulted in radicular pain and Dr gave me a regime of Gabapentin. I went up to 300 ok but at 400 mg I was so far out of it and could not talk or walk. In fact besides drugs Music, deep breathing and listening to podcasts helps to be distracted. Also I bought a mobility scooter. Wonderfully comfortable for the price it was so worth it.

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@msmcecelia

My years long experience with pain meds included cyclobenzaprine. I began to have reverse effects: instead of relaxing the muscles it caused tightening. I take diazepam 2x daily before bed and during the night. Hopefully it won’t do the same thing. I ended up taking oxycodone from 2010-2012 after a severe disc herniation. It took a few days of flu symptoms to wean off 2 1/2 years. I just can’t tolerate Tramadol so during the day I have a Tylenol regimen and Diclofenac 2x with breakfast and dinner. I don’t want anything in the day to make me sleepy. In 2024 the epidural injection was a failure resulted in radicular pain and Dr gave me a regime of Gabapentin. I went up to 300 ok but at 400 mg I was so far out of it and could not talk or walk. In fact besides drugs Music, deep breathing and listening to podcasts helps to be distracted. Also I bought a mobility scooter. Wonderfully comfortable for the price it was so worth it.

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Hi there..... I have 50mg of Palexia Slow release morning and night. At lunchtime if i am needing something i have 500mg of Paracetamol with30gms of Codeine. I can't do alot of Codeine as it puts me to sleep but the 15 and the 30 versions are great for me... just incase it helps.

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@leannestork

Hi there..... I have 50mg of Palexia Slow release morning and night. At lunchtime if i am needing something i have 500mg of Paracetamol with30gms of Codeine. I can't do alot of Codeine as it puts me to sleep but the 15 and the 30 versions are great for me... just incase it helps.

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Great introduction to a new drug. Is it working most days for you? I will check with my Dr.
Thanks!
Taking Tylenol with Codeine even in small doses makes me sleepy too. Just hate constipation problems. I keep a high fibre diet and drink lots of water. No alcohol of course.,..

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@annie1393

My son is 33 years old. He was just diagnosed having ankylosing spondylitis, he has been on Nsaid pills, but those are causing gastrointestinal bleeding. He was and he still is a very active person , he played football and soccer and basketball all through high school and university, he still goes to the gym every day. His doctor adviced him to start him on Enbrel (etanercept), the thing that scares me is it has so many side effects. Can anyone please reply if you have the same condition and would you advice him to start on Enbrel? has it been beneficial? please someone advice us.

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I was diagnosed with Anklyosing Spondylitis and Rheumatoid Arthritis. I had taken Humira but after a while my body had grown accustomed to it. I switched to Humira after that. Both helped me tremendously. I could tell when I was due for my next injection without looking at a calendar.

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@marinemamma

I am on Enbrel and have been on it for several years now, there are a lot of benifits to the drug. I know personally without it I would not be able to walk. I too have AS

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I was on Humira and then Enbril. I do believe it helped a lot. I had breast cancer and do not take it because I'm afraid of a possible side effect of returning cancer. I am in no way saying my cancer was caused by this medicine. I wish I felt safe enough to go back on it. My breast cancer surgeon says it's all about quality of life if I wish to resume taking it but I don't want to go through any of that again. I wish you well! Take care!❤️

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@ginnyd

Nobody has suggested to us that large doses of magnesium and calcium would solve our son's issue. When he was diagnosed he took a combo of meds that included a daily dose of sulpahsalazine. After almost one year of that he suddenly got very ill. He had a fever of 103+ and a rash...one rash looked like tiny bumps on his hands and arms and on his legs it looked like he had been spray painted with purple splatter. He had every test known to man - blood work- organ function tests... everything. Long story short it was determined he had a virus or an allergy to the sulpha med or a combination of both. A low dose of prednisone corrected that prob and he remains off the sulpha med.
The new thing that's just popped up are bumps under his skin that are dime to quarter sized- he said he has four of them- that are painful to the touch. The have been diagnosed as EN which stands for a longer name I can't recall. These bumps are supposed to be a nuisance only and not dangerous but they do hurt.
My question to the doc is why don't we go off the Humira and treat the muscle aches as they come up with less toxic drugs than Humira. Save the Humira for the big flare- ups. Or maybe treat the underlying infection his body is responding to. I am very confused at this moment but if a solution is found I will post it. I think it will be a long process.

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You may want to look into Rheumatoid Arthritis. I have it. Your body literally fights its own immune system making it easier to get ill. Wishing you both the best results.🌺

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Hi, I understand how you feel. I've had horrible back pain (thoracic spine) since 8 years old. Then lower back pain at age 9. I've lived my whole life being told, "there's nothing wrong with you," making me feel crazy. I'm 40 years old now and about 5 years ago I went to a rheumatologist who didn't believe me either. But he diagnosed me with fibromyalgia and did do some testing and X-rays. He was extremely surprised to find out I was B27 positive, 5 of my vertibre (thoracic) had been fused since about 8 years old, my ribs also fused, and my lower spine and right hip (joints) are almost fused. He diagnosed me with AS but, treatment has been very bad. I have no problems taking meds but, the side effects of these such as cancer don't outway the benefits as it doesn't cure but slow down AS. The best thing I could tell you is be your own advocate, argue if you must, and research research research. Start with changing your diet and using anti-inflammatory supplements. I wish you the best of luck and will be praying for you. Stay strong and remember you know your body better than any doctor. Stand your ground and remember docs work for you and you decide who's best for you!

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