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Autoimmune disease

Ankylosing Spondylitis - awaiting diagnosis

4 replies

AC2022 · 08/06/2021 22:50

Hi

Just what it says really. I’m 44 and awaiting results for a test for the genetic marker but all of the other symptoms are there. I’m panicking slightly because I have no idea at all how this might change my life. I’m quite active and run a few times a week with no other health problems. My only symptom is back pain that wakes me up in the early morning but it doesn’t last for long.

Thank you.

OP posts:
RobinNest2820 · 08/06/2021 23:21

My DF has AS. It took 5 years to finally get a diagnosis when he was in his twenties. He is 73 now so I'm sure more is now known.

Does anyone else in your family have AS?

AC2022 · 08/06/2021 23:24

Hi!

Thank you so much for replying. No one in my family has it, although my dad’s side of the family all have some sort of arthritis. Is your dad mobile and active at 73? Has it stopped him doing anything he wanted?

OP posts:
M0rT · 08/06/2021 23:34

Hi, I have Ank Spond. Have been diagnosed 10 years now (at 30) but started having symptoms in my teens. Was misdiagnosed when I had my first MRI as bloods came back free from the marker. Only 70% have it apparently.
Second time damage was so clearly Ank Spond on the MRI that I was diagnosed and started on a biologic medication that basically took all the pain away! So diagnosis changed my life for the better.
But if your symptoms are manageable now there is no reason diagnosis should change your life much if at all.
Treatment is usually Nsaids, progressing to biologics if you worsen enough to need them.
If you get prescribed Nsaids make sure they prescribe you something like pantium at the same time to protect your stomach.
Yoga/Pilates/bodyweight exercises are strongly recommended to keep it under control/slow progression and you shouldn't have to stop running if you don't want to.
Ank Spond is living proof of "move it or lose it" the rheumatologist I see is very encouraging about exercise.
Best of luck and pm if you have any questions.
I am in Ireland but I think treatment/disease management is pretty similar.
Be careful if you Google because they are much more interventionist in the States and a lot of the information online is from there.

RobinNest2820 · 08/06/2021 23:35

He has always been fairly active in the sense that he worked hard until retirement age and loves DIY and gardening etc. We used to go swimming every week as that was recommended as the best exercise to do. He used to do some stretches on the floor every day but that was about it. It sounds like you're already fit from your running so that's good! He has got less mobile and more stiff as he's got older but every case is quite different I believe. One thing he didn't realise is that you can be more prone to fractures later on in life.

I'm not sure why but he hasn't been seen by a professional for many years, apparently he should have been under review? He's just always taken the same medication. There are possibly new treatments available nowadays. He is currently being assessed for biological treatments.

What are your symptoms OP?

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