I'm a hypochondriac with AS

Posted , 8 users are following.

Hi, I'm from Croatia and I've been diagnosed with AS when I was 11 years old, I've been through a lot, we've all been. But, right now I show no symptoms, 3-4 years ago I was on a medicine called "remicade" and that basically "cured" me. I have had no symptoms ever since and I was wondering is there anyone in the same boat as me?

As I grew older (am 17, almost 18 now) I've become more adn more scared because I realized that I can experience symptoms again literally any second. (I'm also kind of a hypochondriac) I literally get a bit of back pain and I'm terrified to say the least!

Can anyone help me out with this? Give me a tip or something? Cheers!

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5 Replies

  • Posted

    Hi Roko,

    ​   Fantastic to hear that Remicade has put you in remission.  That is unusual although it did the exact same thing for my wife who has rheumatoid arthritis.  For over 13 years she has been in remission and she was in terrible shape before starting Remicade.  Truly a gift from God for her and now apparently for you.

    ​  As for your fear, only you can fix that.  I think you have to start with reasonable expectations.  My wife has not been cured of her RA and you have not been cured of your AS.  There are still times when she has a temporary flare and requires a dose pack of prednisone to put the fire out.  But these are rare and temporary.  And there are times when she is getting close to time for her next dose of Remicade and she gets achy and sore.  You cannot assume that you will never have pain again.  Until something radically changes in medicine there is no cure for these autoimmune diseases.  There are only treatments. 

    ​So...... enjoy the remission while you are in remission and deal with the flares.  In the meantime, pray for medicine to start understanding autoimmune diseases better.  Anyone who has been through the process of getting a good and accurate diagnosis in rheumatology understands just how limited our understanding of the underlying processes really is.  Now it is as much an art as it is a science and it has to get better. 

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  • Posted

    Your diet can have a big influence on your health.  Going dairy, sugar and gluten free can help reduce inflammation.  Also, keeping active......exercising.  However, listen to your body.  High impact exercises may be harmful to the joints.  Good luck.
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  • Posted

    Roko, I am in the same exact boat!! I was diagnosed with AS when I was 11 as well. Had a very hard time in high school etc, and was put on remicade when I was 18. I have been pain-free for about 7 or 8 years now!

    I also have Crohn's disease which has not flared in about 6 or 7 years. This past spring I got a colonoscopy with upper GI scope which showed "no signs" of Crohn's disease.

    I too am also a hypochondriac lol. I've learned reading more about the disease is worse for me lol. The truth is, we are the new generation that was put on remicade young, and many of those prognoses from the internet don't apply to us. We're lucky! And hey, if the remicade stops working, there are other drugs out there that do the same thing that our bodies don't know about yet.

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    • Posted

      Another thing Roko, there's an old saying, "the devil you know is better than the devil you don't know". We know what we have and so we know how to treat it. The truth is, anyone can be diagnosed  with anything at anytime! You're in remission, probably indefinitely. You may flare or you may never hear from it again. Don't sweat it. 

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  • Posted

    Hi! I am interested in the different anti tnf treatments.  My daughter is 27 and has very bad pain and no quality of life for the last 12 months. She has been prescribed benepali and is in the 7th week without results. Remicade/infliximab is difficult to get on nhs, maybe it is more risky but I am interested in what is going to be the most effective to give her quality of life back to any extent. Thank you for your post and hope you manage to stay in remission. They say Vitamin D3 and good gut health as I am sure you know! Enjoy.  
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