ankylosing spondylitis

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 pin continues t worsen and i don’t know what to do has anyone had similar problems?

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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@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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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.

Liked by grammydove

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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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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.

Liked by grammydove

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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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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.

Liked by grammydove

REPLY
@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.

Jump to this post

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.

Liked by grammydove

REPLY
@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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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.

Liked by grammydove

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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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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 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.

Liked by Roxie43, grammydove

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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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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.

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There are blood test for each. I test positive for AS and negative for RA, I also have Osteo (diag. for x rays)

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I have the same pains and have undergone many tests. I was tested for the gene for Ankylosing Spondylitis after being referred to a rheumatologist. It’s been a complicated journey I tested positive for the gene for Ankylosing spondylitis. I recently started Humira. I would suggest seeing a rheumatologist. I wish you the best. I empathize with you. The pain can be horrible and debilitating .

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Hi, I am new but I am here to find others who have AS to talk to besides my family.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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Same here…how long have you had AS? I think I have been misdiagnosed. I’ve been battling this disease for 6 years. Thinking leukemia, RA, now AS. ONLY AS b/c I started having back pain this year. But the last 6 years I’ve had joint pain and swelling throughout my body. What are your symptoms like? If don’t mind me asking….and good luck to you.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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well, I am sorry to hear you are struggling to get diagnosed. I went the first 5 years diagnosed wrong with Osteoporosis. I was not diagnosed until 2002 with AS. My SI joints hurt the worst in my lower back it feels like the bones are rubbing together when I do not have my meds. I have problems with fingers swelling pain and stiffness in my back, neck, ankles and feet. it is not as bad now that I am on Embrel, Methatrexate and an anti-inflamatory. I have been told there are 2 types of AS the kind that affects more the limbs and the other the spine. Mine and my brothers is the spine. My son seems to be having other types of symptoms. His feet on swell to extremes sometimes also which I have not had happen. Plantar Facitis is another problem we all have due to AS. It causes the bottom of our feet to hurt. I go every three months for shots in the bottom of them. I’m not sure if any of this helps. I really hope they can help you.

Liked by grammydove

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

Jump to this post

There is a blood test for AS, they test of the HLA-B27 gene. I never had any good diagnosed with regular doctors, I went to a rhumatologist and he knew right away. He says he could tell just by the way I walked. He did the blood test and I was positive for HLA- B27. I’ve had the pain since I was 13, now 48. I am mostly concerned with the side effect of all the drugs that are suppose to help. I don’t want to trade one problem for another.

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