Home Forums General Discussion HI: I need some clarity on my situation

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  • #467740
    hoften
    Participant

    Hi: I have had RA for about a year. Been on Hydroxychloroquin the whole time, 200mg twice a day. I started Minocycline 100mg twice a day since October of 2023. I have not seen any improvement at all since I have been on the Minocycline. The Hydroxy helps to suppress the symptoms so I feel better in that regard. I stopped Hydroxy for about 4 days to see if I needed it and boy the symptoms came roaring back especially my heart rate started racing and I got really scared and I went back on the hydroxy. I am really at a loss and wondering what is going on in my body and why I still have symptoms when I go off the hydroxy. This is such a confusing disease and I just wish there was a switch to turn this off. Can anyone shed some light on what i could be doing to help myself and how to improve my situation. Thank you so much. Heidi

    #467743
    Maz
    Keymaster

    Hi Heidi,

    I think we can all appreciate wishing for that “off-switch!” Sorry to hear you’re having a rough go. Sixth months in is a reasonable time to reassess. We are just patients here so can’t offer medical advice per-se….just some ideas based on personal experiences and what is known about Dr. Brown’s approach and the research.

    Quick question: do you have any recent labs (SED, CRP, RF and anti-CCP) to compare with when you started AP? As Dr. Brown described in the book, sometimes symptoms improve before labs, but also vice-versa. It can be heartening to note labs improving when symptoms are lagging.

    I also started out on the daily protocol, but quickly found it was too much and did much better on 200mg BID M-W-F. The days off allowed hypersensitivity to settle. Brown describes this in his hypersensitivity presentation in the Resources section here (see text in bold in article):

    Presentation by Thomas McPherson Brown, M.D., “Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis

    Another idea to consider: have you been taking the same generic brand since starting? Some folk have found that switching can resolve things.

    #467744
    Linda L
    Participant

    Heidi,
    Please explain to me. You have RA and your heart rate started to race when you stopped Hydroxy… RA affects joints.

    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: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #467746
    PhilC
    Participant

    Hi Linda,

    Heidi probably won’t be able to answer you, so I will tell you what I think. My guess is that she probably has secondary porphyria caused by an intracellular infection. One of the symptoms of porphyria is tachycardia, and one of the treatments for porphyria is a low dose of hydroxychloroquine.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467760
    PhilC
    Participant

    Hi Heidi,

    Which minocycline generic are you taking?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467765
    hoften
    Participant

    HI: Thank you for all your responses. I didn’t know I had any responses. I will look at my labs and see if I see any changes going on. I am taking Torrent Minocycline because I heard it was better than the original one I was taking that started with an A. Also, can you explain more about why my heart racing after stopping hydroxy for 3 or 4 days. You mentioned porphyria. I have never heard of this. This is all so confusing to me. Thank you.

    #467770
    Linda L
    Participant

    Heidi,
    In what way does chloroxyquinine help you with RA? Has your doctor told you why this medication helps with 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: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #467771
    hoften
    Participant

    HI: Sorry for my delay. Hydroxychloroquin helps to suppress the immune function so you do not feel the pain as much. I have been on it for over a year and it has helped me tremendously but I would like to get off of it. I was hoping I could quite it and stay on the Mino but I am not there yet. I am 5 months on Mino. How are you doing with RA? What are you on. Blessings, Heidi

    #467772
    Linda L
    Participant

    Heidi,
    Thank you. I didn’t know its brand name is Plaquenil. I remember it from Dr Brown’s book.
    I am very sensitive to any medications After taking Methotraxate, Naproxen and Zantac for many years. I take Mobic every third day and it is not enough. Long time ago I was considering Hydroxy but I didn’t dare to start it.
    You take 200 mg twice a day. Have you ever tried to decrease it?
    It is so strange that the same medication helps malaria-parasites and an immune disease like RA. From the other point of view I don’t believe that the disease like RA is an immune disease. If my immune system treats me any time when it’s necessary why it would focus on attacking just my joints. I don’t understand it.
    Best wishes to you Heidi.

    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: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

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