A.S. Face 0837: John Lathrop

Face 837Yesterday I scaled mountain passes and explored high sierra cross-country routes.  At one time I powered my bicycle to 40 mph in a sprint and over many hill climbs.  Today I’m a lot less adventurous but not out.  It’s not just from aging…I have Ankylosing Spondylitis and I HATE IT!
I was very active and so very thankful that this AS didn’t attack until I neared the age of 50.  I did have several issues with lower back pain, but the doc said it was a disc issue. That went away each time.  But then I started having reoccurring iritis (this got so bad causing edema in the back of the eye that made me blind in the one eye for a few months several times).  Then a little later my PSA shot up to levels that caused the doctor to scare the heck out of me (several sets of biopsy…OUCH…came back negative each time).   And, I started to get body pains all over the place along my spine and ribs.  My primary care doc was totally useless.  I did my own research and suggested to him that I may have AS and he laughed.  It was only because he sent me to get a colonoscopy normal for my age that I started to get answers.
The gastroenterologist doing the colonoscopy told me I have ulcerative colitis and he told me that I had to stop taking ibuprofen that I self prescribed for body ache.  It didn’t matter because about this time body pains were erupting and ibuprofen was less and less effective.  My pelvic area would kill me in the middle of the night causing me to rock back and forth.  My neck got more and more stiff.  I had no faith in my primary care doc and talked about these pains with my gastroenterologist who suggested a particular rheumatologist.
When I waddled into the rheumatologist’s office the pain and stiffness was at its worst.  I could barely turn my head.  I was in sad shape.  She prescribed prednisone and tramadol while she reviewed xrays.  On the very next visit this angel of a rheumatologist said, “You have Ankylosing Spondylitis.”  AH HA…I was right!  Oddly I was happy and relieved…I finally knew what was going on.  She prescribed the miracle drug Humira.  Immediately after that shot (about 15 minutes) I could touch my toes instead of just my knees.  Eventually the Humira stopped working and we switched to Simponi which is even better.
Today my spine and ribs are not painful thanks mostly to Simponi.  There is some irreversible damage in the neck and upper back.  And, my ribs must be fused because my chest doesn’t expand.  My greatest loss is that I can’t look up.  I can look straight ahead and turn left and right.  I can’t look up.  It upsets me that I can’t ride my racing style road bike or lay in a prone position to shoot…this really bugs me.

California United States of America

12 Responses to “A.S. Face 0837: John Lathrop”

  1. Dear John,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Welcome to Faces, John!! Thanks for sharing your story!

    • LOL…I waited for 666 to be taken…then procrastinated…got into a hurry when I saw 1000 around the corner.

  3. WOW!!!! Congratulations. Thank you for sharing this accomplishment as well as your A.S. journey.

    Face 377

  4. John,

    Thanks so much for sharing your story. It sounds familiar !!

    • Yes, don’t many of these stories sound so familiar! One thing I think I’m seeing is that some doctors are quick to diagnose and others so very slow…

  5. Glad you finely put your story on Faces John,welcome to the club,stay well my Brother in arms.

  6. Thanks for sharing your story John. Keeping docs aware of AS is so important and a never ending task. I can relate to modifying how we do the things that bring us joy. Take care

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