Waiting on results of HLA-B27 and terrified

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Hi,

I am a 27 year old male. Recently I developed a case of iritis. Which has not gone away after being put on prednisone eyedrop for a week and a half. My optometrist referred me to an ophthalmologist who then asked me all kids of questions that had nothing to do with my eyes. Questions I'm sure each and every one of you have heard.

After answering yes a disturbing number of times, doc sent me for a blood test. Telling me that I may have A.S. of course being a person of my generation I Googled it.

Oops. Shouldn't have done that.

I am terrified. But I feel so alone. I feel like despite the fact that my mother has lupus and my sister has fynromyalgia (lucky family huh) I can't talk to them because my pain comes and goes. They deal with it day in and day out. I guess compared to many of you I have it easy too. But I am hoping that people here can understand.

Either way it feels good to vent

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13 Replies

  • Posted

    29 year old female, diagnosed at your age. Was suffering hip pain for 10 years before doctors worked it out. The process can be frustrating. My family thought I was just chasing pain meds half the time. And I wasn't just terrified, I grieved over the youth I thought I would miss out on.

    Google definitely needs to be taken with a grain of salt! Every case is different and while it's certainly helpful to understand what other AS sufferers go through, and learn tricks of the trade, you should never look at their position as a direct indicator of where you will end up. Focus on understanding your own body and it's limits before imagining doomsday (wish I had taken my own advice!).

    If you do have problematic AS, the medications they have now compared to 20 years ago are fantastic. You do learn to manage it and live with it. And you learn to appreciate the good days without pain too.

    As for feeling alone, I used to feel very alone. AS is a silent disease, people don't see your pain. I have an aunt with bad arthritis and she also takes humira. She has suffered a lot longer than I have and is in constant pain too. I used to feel like I shouldn't "whinge" to her because her problems outweighed mine. But I think you'll find people who do have chronic health issues are your best supporters and can also help put things in perspective for you. Be open and honest to your family, and tell them you feel bad about complaining knowing what they go through too. Don't downgrade your own feelings though, they're also valid. Besides, if they have auto immune diseases they are going to understand everything you're feeling, emotionally at least. I have a friend with lupus and she's the first one to lend an ear when I'm feeling down.

    Find a good GP and rheumatologist, eat well, excerise and take each new piece of information as it comes. Try not to stress until you have the facts because you can't do anything with the unknown.

    Lastly, best of luck with your results!

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    • Posted

      Thank you so much for your kind hearted response. It means a lot that you took the time to tell me your story
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  • Posted

    Hi - no you shouldnt have googled it - I did the same and like you was terrified.

    As yet my eyes are ok but in need of a hip replacement and also have painful feet , knees and elbows and of course lower back.I keep off medication as most on offer seem way too aggressive and have bad side effects - I take pain killers when I really cant stand it. I try to exercise as much as possible especially Aqua stretch and swimming .It does work - I kept my symptoms at bay right through my teens up to my 50s with dance yoga etc. I try not to let it rule my life .Good luck!

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  • Posted

    I agree with A1987...exercise and a big key is your diet.  Listen to your body as to which exercises are appropriate, for example high impact may be jarring on the joints as you become older.  I also have psoriatic arthritis, which occurs along side with AS. I am learning that foods with lectins can increase inflammation.  Curcumin is helping to decrease inflammation.  I am trying to stay away from traditional medications.  A1987 has a great attitude/outlook about this autoimmune disease.  
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  • Posted

    Thank you again to everyone who took the time to respond. I have an appointment with the doc on Friday hopefully my blood test came back negative and I am just aging like milk.
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  • Posted

    Dear Hayden,

    I've had AS for my whole life. Can't remember a day without it.

    But don't despair go to a rheumatologist and have them put you on a biological. I inject Enbrel once a week. Thank God it keeps theAS from getting worse and helps me to move. I also take 200mg of Celebrex which is an anti inflammatory pill once a day. This takes my aches an stiffness away.

    There are ways to cope with this desease process . You are not alone. Be brace and communication is key with family . They will understand because their ills are under the same autoimmune disorders . It can be scary and overwhelming at first but you have to take care of this now before it gets worse. Thank goodness you had the iritis so you found out. Good luck. If you have any questions feel free to ask me. Courtney

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    • Posted

      P.S. your blood test may come back negative but if you have the symptoms you may very well still have AS.
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  • Posted

    Hi HaydenG.....yeah...vent away this site is for venting/complaining/discussing and all and sundry in between. So if you have questions it's OK to ask them here...we will all try to answer. Happy you found us...G

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  • Posted

    Hi ! I'm new here and seen your post . I'm also waiting on my HLA-B27 test results . Wonder how long it usually takes to get this type of blood test back ? I've received all my other blood results but this one . I've been having some eye issues but they called mine uveitis. It was terrible while taking steroids! Anyways , I thought I would comment since we have some similarities.

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    • Posted

      Hi Barb

      Good luck with test results. Mine only took a couple days to come back positive for the HLAB 27 gene.

      Let me know what happens?

      Uveitis is painful. I'm sorry.

      Thinking good thoughts Courtney

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    • Posted

      Uveitis is so painful and I couldn't believe that the steroids made it worse , or at least it seemed to . I will let you know about my results . Thank you

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  • Posted

    Sorry to read about your concerns, my A.S. symptoms started in my teens and now 70 next year! Iritis was a surprise to me as had never been mentioned. There are myriad symptoms of A.S. but there is support out there now, and treatments, that weren't available 50 years ago. We are out there somewhere, don't despair, and good luck

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    • Posted

      Thank you , Tony.

      Always one to need support.

      Seems myAS wants to go to my feet now and Achilles' tendons !

      Hopefully I never have Iritis. It's sounds so painful. Think good thoughts.

      Courtney

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