Home Forums General Discussion Question about labs and new symptom

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  • #462437
    redrock
    Participant

    After three months on Minomycin from New Zealand, I had my labs done for the anti-Centromere antibody, only this time the lab did not run the standard test where you get a ratio, i.e., 1:1280. Instead it just says “Anti-Centromere B Antibodies >8.” This does not tell me much, as it does not have a range, except to say that normal is under .9. What I’d like to know is how bad is “>8”? If the upper limit was like 100 I would think it’s not so bad but without that info I don’t know how it compares to a previous ratio esult of 1:1280.

    As I’ve posted in the past I have been struggling with Minocin brand substitutes since it became unavailable a few years ago. I’ve tried generic, going overseas, etc. and am about to just let nature take its course as I’ve exhausted all options.

    I would be okay with that but for the fact I’ve developed an annoying new symptom of waking up every day with fingers and toes numbs. Initially I thought diabetes but glucose and HBA1C have thankfully come back normal. So my question is whether numb extremities upon waking is related to CREST or scleroderma in general?

    #462441
    Pinkmoth
    Keymaster

    Redrock,
    One of my major symptoms was waking up with numb hands. I realized that severe inflammation was putting pressure on my nerves and causing it. I don’t know what else to say about it other than when I got the inflammation under control and began to really heal it slowly abated.

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #462442
    redrock
    Participant

    Thanks for that, Pinkmoth. How did you know you had inflammation? Did you have a high SED rate number? All my tests are normal except the AntiCentromere, although I did not have the SED rate taken. I don’t have any visible symptoms of inflammation at this time and I’m wondering if there is a way to measure this diagnostically through a blood test.

    #462443
    Maz
    Keymaster

    As I’ve posted in the past I have been struggling with Minocin brand substitutes since it became unavailable a few years ago. I’ve tried generic, going overseas, etc. and am about to just let nature take its course as I’ve exhausted all options.

    I would be okay with that but for the fact I’ve developed an annoying new symptom of waking up every day with fingers and toes numbs. Initially I thought diabetes but glucose and HBA1C have thankfully come back normal. So my question is whether numb extremities upon waking is related to CREST or scleroderma in general?

    Hi Redrock,

    Did you see this discussion thread about brand Minocin now being available in 50mg caps?

    Minocin and generic minocycline

    Quick additional thought that came to mind, if you have CREST there may be some calcium dysregulstion going on and I’m wondering if this could cause numbness (tetany) in extremities? Calcium labs might look normal on paper but when calcium is binding in deposits (calcinosis) around the body, perhaps it is more bound than in free form? Just an idea for you to research. Also, mino binds to minerals, like calcium, in the body due to its chelative properties, which is why it’s been studied for CREST and found to be helpful for clearing these deposits.

    Another thought is that scleroderma tightens dermal layers, restricting blood flow and must be a pretty common symptom to experience these parathesias in extremities. Raynauds can also make fingers feel numb with abnormal blood flow.

    Hope you find your answers, Redrock, and now that original brand Minocin is available again, at a reasonable cost, it might be worth looking into trying to get your local Mom & Pop pharmacist to stock it specially for you?

    #462446
    redrock
    Participant

    Thanks Maz.

    I’ve just started Aknemin. Does anyone know if this should be taken the same as Minocin, i.e. several hour apart, away from dairy and thyroid? It’s really hard for me to space all my medications/food. Is the standard doze 100 mg twice a day, every other day, like it was with Minocin? I will check calcium numbers, thanks. If this doesn’t work I will check out the 50 mg Mino but I’m pretty sure that will be cost prohibitive for me.

    #462460
    Maz
    Keymaster

    Hi Redrock, hopefully you will receive a patient instructions leaflet with your prescription. If not, you can always look it up online. Below is one UK link to help and it actually recommends taking Aknemin at mealtimes to remember to take it. However, like all tetras, you may want to ask your doc about keeping it away from foods with high mineral content (e.g., calcium, iron, etc.). You aren’t taking it for acne and likely want full absorption. I take the first generation tetra, which def needs to be on an empty stomach and I keep a two-hr window for any supps in case they have any fillers that might affect absorption. It’s very tricky to time when to take things, but I recall someone here who actually drew up a chart to fit everything in on schedule every day. I also use my iPad or iPhone alarm for reminders throughout the day.

    Aknemin Patient Leaflet

    Good luck!

    #462466
    whaleharbor
    Keymaster

    I’ve had numb fingers from carpal tunnel…related to RA damage and excessive typing that is the result of the work that I do. Whatever. I’ve talked to my doctor. I don’t worry about it. Many people with and without RA have carpal tunnel…especially if they spend their life typing as much as I do. Hang in there…and mention it to your doc. My 2 cents…

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

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