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kelsey1

ankylosing spondylitis

Posted by @kelsey1 in Bones, Joints & Muscles, 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?

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zildjiangirl

Posted by @zildjiangirl, Aug 26, 2011

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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annie1393

Posted by @annie1393, Oct 17, 2011

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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ginnyd

Posted by @ginnyd, Oct 30, 2011

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.

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annie1393

Posted by @annie1393, Oct 30, 2011

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.

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ginnyd

Posted by @ginnyd, Oct 30, 2011

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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annie1393

Posted by @annie1393, Oct 30, 2011

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.

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marinemamma

Posted by @marinemamma, Apr 12, 2012

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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faithy33

Posted by @faithy33, Aug 27, 2012

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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kerrilynn1

Posted by @kerrilynn1, Apr 27, 2012

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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zina

Posted by @zina, Oct 29, 2012

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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mikeshutt

Posted by @mikeshutt, Oct 9, 2013

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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rosestea

Posted by @rosestea, Jul 28, 2012

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

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faithy33

Posted by @faithy33, Aug 27, 2012

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

Posted by @rosestea, Aug 29, 2012

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.

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zina

Posted by @zina, Oct 29, 2012

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.

noramesfer

Posted by @noramesfer, Nov 4, 2012

Hi my name is Nora. I am 22 and have just been diagnosed with AS as well. I am wanting to find someone who I can talk to that understands I love my family and they try but they don't really understand my pain. I feel they think I am being a drama queen sometimes.

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laurenesquivel

Posted by @laurenesquivel, Dec 26, 2012

Hi Nora ,
I've had AS since I was 21 o went to so many Drs misdiagnose but I have the best rheumatologist he put me on enbrel and now am 40 doin good. Good luck I also had an iritis due to AS. I have to attack it right away.

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Posted by Anonymous-536eb15b, Nov 1, 2012

I just been diagnosed with Ankylosing spondylitis. I have been suffering with back pain now for over 7 years. I have developed other problems every year. I now have chronic kidney stone disease, chrones, chronic broncos, and a few other things. I have dealt with pain and sickness almost my whole life. I am now 22. I am happy to finally know what was wrong but I am scared and worried about my future. I need help understanding things so I can relax. If there is anyone out there who can help it would be greatly appreciated. I will wait. Thank you for reading my post and for your help.

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pray4relief

Posted by @pray4relief, Nov 6, 2012

Hi, I'm sorry you going through all of that and especially at your age! I have chronic pain for about 10 yrs now, I'm 30. Today I was actually trying to find things with my symptoms. I came across A.S and was wondering if that could be my problem? I mean I have a long list of diagnosis but out of 5 doctors not one has helped. I did have epideral shot a few weeks ago. It helped for 2wks. Anyway I came across AS and remembered I have a younger cousin that was diagnosed when he was 24. He was hooked of morphine but now is off and getting shots. His bones r fusing together...hes only takin the shot called...Sinphony? Not sure how its spelled? I hope you start getting some relief now that you know what's wrong. Best of luck!

noramesfer

Posted by @noramesfer, Nov 6, 2012

Thank you so much. I hope that figure out what is wrong I know what it is like jumping from doctor to doctor. I hope your cousin is doing ok, or as ok as it he can be.

andydrew

Posted by @andydrew, Nov 27, 2012

I have suffered with pain from Ankylosing Spondylitis since I was 13 years old. Unfortunately, I diagnosed myself at the age of 26, by my own research. I even started having bouts of the related iritis at the age of 21. I started taking Enbrel, in fact, I am featured on their website and publications. I've recently had to stop taking, so I'm struggling again with intense pain in my thoracic and lumbar areas of my spine. AS is a tough disease, and you must be your own advocate to have success. I'm now 30, and it seems that the pain has moved from my toe to my knees, to my hips, to my tailbone, now my lower to mid back, shoulders, ribs and kneck. Kinda feels like fibromyalgia pain. Many spasms. Good luck and God Bless You, I hope your AS becomes manageable for you.

laurenesquivel

Posted by @laurenesquivel, Dec 26, 2012

Wow I had my first flared up ay the age of 21 the same exact pattern like yours. I was mis diagnose too many times but am taking enbrel seems to work am 40 and feel good the best of luck to you . The best thing not to be I'd under stress that's when I flared up the most . Lori

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lob

Posted by @lob, Feb 20, 2013

Hi Andy , I m Lobsang from tibet and living in texas with 3 lovely children , and I been dealing with as from long time, what I learnt in my life stop worrying start living , my master use to say , if there is solution , find it
Why worry
If there is no solution
Still why worry , because there is no solution
AS is kind of no cure
So don't worry my friend , fight it
Never give up
If you fellow these rule believe me you will live
Much happier ,

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colleenyoung

Posted by @colleenyoung, May 2, 2016

Hi @emmur16 and @billindc,
On separate discussion threads, each of you mentioned you have ankylosing spondylitis. I wanted to introduce you to one another and to this discussion thread.

How does AS affect you now, especially given other health issues you are managing?

billindc

Posted by @billindc, May 2, 2016

I'm 56 recently diagnosed with ankylosing spondylitis, and can remember
joint pain since a teen ager. Usually it was thought to be a sprain from
sports, but it took forever to heal and sometimes never did feel right
again. Then, back and neck pain, always had dental issues (NIH study showed
AS patients had 8x incidence of periodontal disease) and finally "spurs" on
vertebrae and on heels where Achilles inserts. Lots of NSAIDS and then hip
issues began and still all serological tests are negative and the
Rheumatologist said the hallmark X-ray findings are all present. I thought
fibromyalgia at first, too. Also, I do not sleep well. Now, I've developed
mesenteric panniculitis/sclerosing mesenteritis. It seems a lifetime of
pain, etc., now has a name, but no cure. Symptomatic treatment is the best
we can do for now, I suppose. But, quality of life is diminished somewhat,
and on those particularly painful days I find myself being short-tempered
with those I love and that is the worst part of a debilitating disorder.
No, AS is not "terminal", and thank goodness for that, but there are bad
days and the multiple complaints can be overwhelming. I have been putting
off taking Enbrel, but with the abdominal pain and multiple dental issues, I
have to give it a try despite the lymphoma or infection risks. Life is just
too short to hurt any longer, right? Now I've developed some vision issues
(minor double vision at times) that was first thought to be dry eyes, but
I'm guessing this is probably related to autoimmune issues. I'm pretty sure
my hearing loss is unrelated, but either way I'm falling apart way to soon.
🙂 We all have a tortured path that finds us here online and I wish everyone
only the best. Remain hopeful, stay active and busy and I recommend a
pet.unconditional love on the most painful days is a godsend! J ~Bill

laurenesquivel

Posted by @laurenesquivel, May 3, 2016

Hi my name is Lauren 43 with ur same symptom I take enbrel once a week I suffer since I was 20 I stay away from red meat that helps me take Moringa it takes the inflammation

rosestea

Posted by @rosestea, May 3, 2016

I have been diagnosed since 2002.  I was miss diagnosed for 5 years the pain started at age 25 and am now 47.  My Brother was only 16 when his pain started and was not diagnosed for many years.  I have been on Enbrel for 12 years and Methotrexate for 6.  It is amazing the difference with or with out it.  The Ankylosing Spondylitis would not allow me to walk with out it.  My brother made the decision not to take Enbrel or medication for it and he is crippled over almost in half and there is nothing that can be done now he is only 42 years old with small children.  I would advise anyone to take the medication.  I have some bad days but the good out way the bad.  I can play with my grandkids and I thank God for that all the time.  I wish you luck and I hope you realize the medication can help.
Sincerely,
Rose

alysebrunella

Posted by @alysebrunella, May 3, 2016

Welcome back to Connect, @laurenesquivel!
Lauren, how long have you been taking Enbrel? After putting it off, @billindc has decided to start taking Enbrel. What experience or tips would you share with him?

Bill, you recommend having a pet. What pet do you have and does that help keep you active?

billindc

Posted by @billindc, May 3, 2016

I like the companionship of my HUGE Maine Coon cat, Abigail. She is about
as sedentary as me, so in retrospect, I would recommend a dog that requires
going for regular walks! J

billindc

Posted by @billindc, May 3, 2016

Lauren,

Thanks so much for the tip regarding Moringa! I hope you continue to feel
better!

Warmest,

~Bill

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