Need Advice:Diagnosed with AS 10 month ago and doctor hasn't been communicating.

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Hello everyone! I am 21 years old and was diagnosed with AS 10 month ago, at first my doctor believed it to be a minor case of it since the pain wasn't too bad yet and there was only evidence of residual inflammation in my lower spine, nothing too serious yet. I left the country for four month for school and in that time the pain drastically increased and has continued to get worse since then.

When I got back in the country my doctor kept pushing my appointment despite knowing the increase in pain. When I finally saw him, he started me with Humira and after the third injection I realized I was allergic.  He then started me on Cosentyx and after the first injection I could no longer continue using it because of my big fear of needles and the application of it is slightly different. I messaged and left message for my doctor multiple time and he did not get back to me, so i had to wait until my appointment 1 month later. And during these 10 months none of the pain medication I have taken has worked, and I have tried seven different ones, but my doctor continues to prescribe me the same ones but at higher doses and that have strong side affects for me despite knowing this.

Is this a normal route that doctors proceed with? He is a very nice doctor but there has not been any progress in terms of helping my pain, should I consider finding another doctor? I would love to see what you all think, I will really appreciate it.

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  • Posted

    Hi Carla,

    Have you tried a variety of prescription nonsteroidal medications? That was the first line of medicine I was prescribed when I was first diagnosed in my twenties. I take a Voltaren extended release but I also take Cosentyx with it. I just started Cosentyx recently and the needles are scary, I cannot inject myself but I can take it if someone else gives it to me. It has helped a lot with the pain from inflammation. I was allergic to Humira too after taking Remicade for a year. I think those two drugs act on the same pathway. I hope this helps you. Ice helps momentarily but the pain returns.

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  • Posted

    Hi Carla. I was diagnosed 2 yrs ago and started with Naproxen. The pain seems to be constant nowadays. Anyway try yoga and swimming as well. Also walking can help a lot. Check out NASS website if you haven't done it already. Ask for physio appointment as well. My physiotherapist is amazing I must admit a bit better than my rheumatologist.

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  • Posted

    The 1st line of defense is Sulsalene a then methotrexate and then biological's

    Surprised U went to bio. so fast.

    That is good, surprised the insurance co. gave the OK.

    Earlier it is addressed and put into remission the greater quality of life.

    Have U considered remecade? That seems to be the gold treatment for AS sufferers.

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  • Posted

    It took 10 years for my diagnosis and in that time I had alot of different medication till they managed to get the right combo.
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  • Posted

    Hang in there!!

    It seems the rule of thumb for doctors these days is to prescribe the least amount of medication possible.  Long term use of the medications can add more trouble and pain down the road (my stomach is very messed up now from decades of meds.) If you don’t believe he’s taking your pain seriously, get another consultation. Not all rheummys are great with AS. I’ve seen the best and worst of the lot. 

    In my 20’s, I took NSAIDS and a little pain medication.  Exercise and acupuncture  provided a lot more freedom.  Stress reduction, swimming, aqua exercise, non-inflammatory diet, pacing and CBT for chronic pain have been VERY helpful as well. 

    Remember, each of us are unique. What helps one person may not work for you. 

    Wishing you the best of health and patience through the AS journey!!

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