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Ankylosing spondylitis: anyone else?

Spine Health | Last Active: Oct 21 9:35am | Replies (78)

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@zildjiangirl

I've had chronic hip pain that took about 5 years to get diagnosed as ankylosing spondylitis. The only things that have really helped me are Enbrel injections and oxycodone. Unfortunately I am incredibly tolerant and dependent on oxycodone but it's the only thing that touches the pain. I would just looking into something like Enbrel and having an MRI done of SI joints. My pain is still horrible and controls my life but before Enbrel, I could barely get around and at my best I was constantly on crutches.

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Replies to "I've had chronic hip pain that took about 5 years to get diagnosed as ankylosing spondylitis...."

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.

My son was diagnosed at 23-he too was a high school and college athlete. He had such pain and the only thing that helped stop the swelling in his feet was starting on a regimen of Humira injections. After one year of shots it seems there are other issues popping up. We are trying to figure out if they are related to the Humira or to the disease. I think the Humira is something that needs to be carefully monitored because even though it brings relief there are also significant side effects in some cases.

Thank you ginnyd to your reply. My son did not start yet in Enbrel, you think is the same as Humira regimen? I have read about the Enbrel that has significant side effects. Can you please , if possible to tell me what are the issues that your son has been having after taking the injections for a year? Some people has been suggesting for him to take a large doses of Calcium and Magnisium. I am afraid by doing that, he might develop kidney stones , which is genetic in our family. Any advice would be appreciated.

Thank you ginnyd to your reply. My son did not start yet in Enbrel, you think is the same as Humira regimen? I have read about the Enbrel that has significant side effects. Can you please , if possible to tell me what are the issues that your son has been having after taking the injections for a year? Some people has been suggesting for him to take a large doses of Calcium and Magnisium. I am afraid by doing that, he might develop kidney stones , which is genetic in our family. Any advice would be appreciated.

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.

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

Enbrel did nothing for me, I'm 33 and have AS. Nothing is working b/c all the medications prolong the damage from the disease. Does not cure it. Sorry but it's true.

Your situation sounds unbearable. But you are fortunate that Oxycodone works for you. It quit working for me last year. I haven’t tried Embrel though. I suffer with chronic SI pain (10 years) that keeps getting worse. Also bilateral hip pain (1 year) and a failed knee replacement (6 months). Recent Steroid injections in SI joints enable me to actually walk through a grocery store for the first time in a year. I have endured every medical intervention on offer and after 3 pain clinics I am told there is nothing more to offer. Yup…pain rules my life.