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This topic contains 5 replies, has 3 voices, and was last updated by  whaleharbor 9 months, 4 weeks ago.

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  • #458687
    Linda L
    Participant

    I met a lady with RA yesterday. All fingers of her hands were deformed but she could move them without any problems. My fingers are straight but stiff and I cannot bend them. Why is it so different? Is it a different type of RA?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia Very low iron Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, Panadol Osteo, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #458688
    whaleharbor
    Moderator

    Hi Linda, I’m just a patient like you and therefore I know nothing. But here’s what I know about me. I’ve had RA for almost 30 years now. I have one finger that is deformed from the RA but unless you know it, or I show it to you you’d likely never really notice the deformity. Anyhow when I was in complete remission that finger worked just fine and didn’t hurt…but the deformity was still there. Right now, I’m getting over a flare and going back to remission but that finger now hurts and is still deformed. For me the deformity happened early on and quickly…it will never go away. Frankly, I don’t care as long as it works and doesn’t hurt. BTW it’s the “bird finger” on my right hand…and the deformity causes it to not bend down completely any longer…so I used to tease that I was in perpetual “flipping of the bird status.” (humor, even off-color humor helps me to cope)…

    And for those wondering…minocycline put me into remission and halted the progression of deformity in my hands and feet…I’m working my way back there after a switch in generics which coincided with a severe life-stress event.

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

    #458716
    Linda L
    Participant

    Thank you whale, interesting. How long have you been taking minocycline?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia Very low iron Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, Panadol Osteo, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #458722
    whaleharbor
    Moderator

    Linda, I started in 2008 with the minocycline and it took a year(ish) I think to go into full remission. I went out of remission in Feb of this year after a horrible traumatic stressful life event that coincided with a change in generics. Prior to minocycline I was on prednisone and anti-inflammatories.

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

    #458731
    Spiffy1
    Participant

    When you say it took about a year, did that reflect in your labs as well? I have been on antibiotics about 2.5 years. I am doing very well at the moment but my RA factor still hovers. Makes me wonder if I need to do something in addition or different. I do plan on going up to 4.0 milligrams on LDN. Hmmmm.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458750
    whaleharbor
    Moderator

    Yes, my labs were all excellent. As far as what it did to my RA factor I have no clue. My doc and I have this unspoken agreement…he worries about the numbers and I don’t. I know it’s stupid not to know, but it’s what I have to do to survive. He tells me I was in complete remission (based on lab results) and he was NOT a believer. So…sorry I can’t help you on the RA factor.

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

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