A.S. Face 1587: Melody

Face 1587

I was diagnosed with Ankylosing spondylitis after a year of testing when I started having joint issue immediately following the birth of my son. Enbrel worked for a while. I was put on prednisone and gained 75 pounds in 7 months. I was taken off prednisone and put on Humira which broke me out in shingles on my face and 0 relief. Remicade was my saving grace but after growing a tumor, the FDA will not allow me to continue tnf blockers. I am now on methotrexate while I deal with the rumor growing in my neck. It’s 1ml a week. My hair is falling out and I’m constantly sick. But this is all I have.

California, United States of America


13 Responses to “A.S. Face 1587: Melody”

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

  2. Many prayers your way.

  3. I’m so sorry, this is such a terrible disease. I’m in the same spot. (No tumors, though)

    You are not alone. Sending you support and love!

  4. Enbral messed with me too. Methotrexate is a chemo med. that crap isn’t good for you either. Good luck. I only take Ibprophen and some pain meds. It’s the only thing that helps. The rest is worse than the AS. It sucks. Thank God I have a great family that puts up with my moan and groans. Chronic pain 24/7 with very little sleep. I nap when Im finally exhausted. It’s not an easy life. Just count your blessings.

    • They took me off the methotrexate as my hair was breaking apart and coming out in clips. I was also constantly ill. I now have no maintenance for this disease until my tumor removal in March. Hopefully, life can re-start after that.

  5. Welcome to the group Melody!

  6. Such a sad story, and I truly feel your pain. I too take methotrexate, and have sacrificed my beautiful long hair. Mine is now brittle and thin and breaks apart. I take Enbrel 2x per week, and have had very little improvement Humira did nothing for me, prednisone made me gain weight and gave me terrible headaches. Since my diagnosis my life has changed drastically. I too found out I had AS after pregnancy. It’s been a tough road, and I’m hoping that when I start Remicade in two weeks it will be the answer. Best of luck to you.

    • Off of methotrexate. Hair is coming back to life but I had to cut is almost to saved to get rid of the “dead” hair. Ironically, I’m still incredibly nauseas. Maybe it’s my tumor causing a biological reaction. I guess I’ll know soon as I have tumor removal surgery March 11th.

  7. Hi. Sorry to hear. I have been on methotrexate for more than a year now. In the beginning i used to get nauseous and sick up to 3 times a day. This lasted for at least 10 months before it subsided. I hardly get nauseous from the medicine anymore. i am still battling with pain though. at this moment i dont know if any medication will relieve one from pain entirely. i think we all are doing the best we can by just coping and hanging on.
    all the best further and i pray for more painfree days.

    • Yes! Praying for you to have pain free days. We all deserve this. Thank you for your comment. I feel better knowing it’s not just me and methotrexate was a struggle for most. I wish I could have stayed on to see if it worked. I mean, I already lost my hair.

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