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  • CRMO "Chronic Recurrent Multifocal Osteomyelitis"

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    Old 03-31-2014, 04:22 PM   #1
    PJCRMO
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    CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Our 11 year old daughter was diagnosed with CRMO this past October. It started out in her knees and has spread to new places. She's been on Methotrexate since last year and started Enbrel injections in February with no luck. She just started the Humira injections, that were so painful, nothing like the Enbrel. Since this is a rare condition there isn't many people to talk to about this.

    Does anyone have any information on CRMO and HUMIRA? or have a child that has CRMO?

     
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    Old 03-31-2014, 05:51 PM   #2
    anonyyou
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    Re: CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Quote:
    Originally Posted by PJCRMO View Post
    Our 11 year old daughter was diagnosed with CRMO this past October. It started out in her knees and has spread to new places. She's been on Methotrexate since last year and started Enbrel injections in February with no luck. She just started the Humira injections, that were so painful, nothing like the Enbrel. Since this is a rare condition there isn't many people to talk to about this.

    Does anyone have any information on CRMO and HUMIRA? or have a child that has CRMO?
    Were they able to find out what caused it? My mom has Spinal Osteomyelitis, but was so misdiagnosed that by the time it was caught and they did bone biopsies to try to identify the cause, but weren't able to find it.

    I empathize with you a lot. I've done a lot of research on it, so much that I was making suggestions to the doctors (and you know they love that ) because all they kept telling my mom is this is really weird. That didn't help much!

    I think Osteomyelitis is probably a lot more common than the doctors think, but because it can present in different ways, parts of the body, age groups, etc., I think the docs miss it or if they catch it they don't follow the treatment protocol.

    One test is called MELISA. It's a blood test where they isolate some white blood cells and introduce different metals to see if your body is hypersensitive (aka allergic). I had the test done because I have had 2 cervical fusions, the 2nd they put a plate in my neck. Well, 14 years later, because they tested me for allergies to common implant metals, I found out I'm allergic to aluminum. Never would've guessed that one, and aluminum is in so many things, so my body is constantly being immunologically attacked and it's not wonder I have chronic pain, weird reactions to meds, and generally feel crappy.

    Good luck.

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    Old 05-31-2014, 01:08 PM   #3
    marykins2004
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    Re: CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Sorry to hear about your daughter, and sorry to hear that methotrexate wasn't effective.
    My grandson has just been diagnosed, at 10 years old. He takes his first dose of 'MTX' today. Hate to have him on this, but the painful hips for the past 3 months, necessitate something be done! Thanks for your post, and hope you've had some luck!

     
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    Old 08-01-2014, 11:44 AM   #4
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    Re: CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Our daughter has now been on HUMIRA since the end of March. She started feeling better within a by the second injection. She takes the injections every two weeks!

    The pain has subsided and she no longer needs to take steriods or extra pain medication. We are very pleased with the results, just hope it last!

     
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    Old 08-01-2014, 11:53 AM   #5
    PJCRMO
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    Re: CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Quote:
    Originally Posted by anonyyou View Post
    Were they able to find out what caused it? My mom has Spinal Osteomyelitis, but was so misdiagnosed that by the time it was caught and they did bone biopsies to try to identify the cause, but weren't able to find it.

    I empathize with you a lot. I've done a lot of research on it, so much that I was making suggestions to the doctors (and you know they love that ) because all they kept telling my mom is this is really weird. That didn't help much!

    I think Osteomyelitis is probably a lot more common than the doctors think, but because it can present in different ways, parts of the body, age groups, etc., I think the docs miss it or if they catch it they don't follow the treatment protocol.

    One test is called MELISA. It's a blood test where they isolate some white blood cells and introduce different metals to see if your body is hypersensitive (aka allergic). I had the test done because I have had 2 cervical fusions, the 2nd they put a plate in my neck. Well, 14 years later, because they tested me for allergies to common implant metals, I found out I'm allergic to aluminum. Never would've guessed that one, and aluminum is in so many things, so my body is constantly being immunologically attacked and it's not wonder I have chronic pain, weird reactions to meds, and generally feel crappy.

    Good luck.

    Thank you for your message, and wishing you good luck. I do hope you feel start to feel better soon. PJCRMO

     
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    Old 11-04-2014, 11:19 AM   #6
    angelrobert
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    Re: CRMO "Chronic Recurrent Multifocal Osteomyelitis"

    Congratz that now you are feeling better now, Hope all pain will relieve soon, Just take rest.

     
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    crmo, humira, rheumatoid arthritis (ra)



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