Home Forums General Discussion High dose of Mino, please help

This topic contains 13 replies, has 6 voices, and was last updated by  Linda L 3 years, 6 months ago.

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  • #307080
    Linda L
    Participant

    I have been advised to increase a dose of Mino to 100mg twice a day every day for RA /from 100mg M/W/F/
    I remember that last year when I tried the same dose I couldn’t do it due to gastro, ulcers etc. I take good probiotics.
    How to survive with a higher dose? What to do and eat?
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #365588
    m.
    Participant

    What’s the context of the recommendation to go to daily dosing from pulsing?

    #365589
    Lynne G.SD
    Participant

    Hi Linda;
    When I started AP I took mino 2 hours away from food and had terrible throat and stomach pain from doing so.Taking it with some food works just as well provided there is not much iron or calcium in it.The problem stopped immediately

    #365590
    lynnie_sydney
    Participant

    Hi Linda
    Yes it would be helpful to understand the reason you’ve been advised to move from pulsing to twice daily dosing. Was pulsing not working? What was the Doctor’s rationale for this?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #365591
    Linda L
    Participant

    Yes, it is a huge difference between 300 mg and 1400 mg per week. I think the reason is that I have been 9 months on Mino and I am still in pain and walk with a frame. Now I need help with washing and dressing, so generally I am worse. A month ago I stopped taking Methotraxate, very slowly reducing it. I didn’t do it because I felt better, but because I really wanted to stop it and give a better chance to Mino. After I stopped it I haven’t noticed any rapid change in my condition. I am now on Prednisone 2-3mg a day, Naprosyn, Zantac, Oroxine plus supplements.
    Yesterday was the second day on a higher dose of Mino. This morning when I woke up I couldn’t move at all. The pain all over my body was much bigger. I took additionally some painkillers and it helped just a little. Is it possible that I am experiencing Herx so soon ? It is so difficult and I worry about my stomach also because I must take 3-4 tablets of iron per day due to anemia and very low iron /iron level was 3 only on 7th February and a minimum is 7/ HB was 8.5, RCC 3.3. I have refused an iron transfusion, so a doctor has given me three weeks to try tablets. If it doesn’t work I will have a transfusion. A new test is due on Monday.
    I really intend to keep taking a higher dose of Mino. Maybe it is this long-awaited Herx and after that I will feel better?. I believe in AP and don’t want to go back to MTX.
    Thank you to all who have replied. I appreciate it so much. I really try to be patient.
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #365592
    m.
    Participant

    Hi Linda L,

    I’m so sorry to hear about the pain you’re in! You have RA, yes? Someone please correct me if I’m wrong, but my understanding is higher doses and/or daily dosing can really aggravate the inflammatory reaction in those with RA.

    In general, you see people with RA on pulsing doses (MWF) and those with Scleroderma on daily dosing.

    You wrote: A month ago I stopped taking Methotraxate, very slowly reducing it. I didn’t do it because I felt better, but because I really wanted to stop it and give a better chance to Mino.

    That’s a couple big changes in a relatively short time frame. You weaned off Methotrexate, and switched from pulsing to daily dosing.

    Tell us more about the stomach problems. Did they find occult bleeding? Why is your iron in the basement?

    What’s your doctor like? Experienced with AP? Somewhat cooperative?

    #365593
    Linda L
    Participant

    M.,
    The doctor is a very experienced in AP, good doctor. I have RA. I used to have my signature, but it was deleted. I will write it again.

    Why is your iron in the basement?
    – Sorry, I don’t understand this question. What do you mean?
    With stomach problems, it is mostly pain and I think acidic reaction.
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #365594
    m.
    Participant

    @linda L wrote:

    M.,
    The doctor is a very experienced in AP, good doctor. I have RA. I used to have my signature, but it was deleted. I will write it again.

    Why is your iron in the basement?
    – Sorry, I don’t understand this question. What do you mean?
    With stomach problems, it is mostly pain and I think acidic reaction.
    Linda L.

    My apologies, Linda L., why is your iron so low? What is the doctors guess?

    #365595
    PhilC
    Participant

    Hi Linda,
    @linda L wrote:

    I have been advised to increase a dose of Mino to 100mg twice a day every day for RA /from 100mg M/W/F/
    I remember that last year when I tried the same dose I couldn’t do it due to gastro, ulcers etc. I take good probiotics.
    How to survive with a higher dose? What to do and eat?

    That is a big jump in your mino dose. Ask your doctor if you can take 100 mg a day instead, with the idea of eventually working your way up to 100 mg twice a day.

    @linda L wrote:

    Yesterday was the second day on a higher dose of Mino. This morning when I woke up I couldn’t move at all. The pain all over my body was much bigger. I took additionally some painkillers and it helped just a little. Is it possible that I am experiencing Herx so soon ?

    Yes, definitely.

    @linda L wrote:

    I am now on Prednisone 2-3mg a day, Naprosyn, Zantac, Oroxine plus supplements.

    It is so difficult and I worry about my stomach also because I must take 3-4 tablets of iron per day due to anemia and very low iron /iron level was 3 only on 7th February and a minimum is 7/ HB was 8.5, RCC 3.3. I have refused an iron transfusion, so a doctor has given me three weeks to try tablets. If it doesn’t work I will have a transfusion.

    I strongly suspect that the naproxen (Naprosyn) you are taking is a major contributor to some of the problems that you have been experiencing. Naproxen is very hard on the stomach. And it’s quite possible that the naproxen is making you bleed internally (i.e., bleeding ulcers), and that is the reason why you are anemic.

    I’m a little surprised that you are still taking naproxen, since you seemed so determined to get off of it. You told me you were going to ask your doctor for a prescription for Celebrex. Did you do that?

    Phil

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

    #365596
    Linda L
    Participant

    Phil,
    Yes, I spoke to my GP that time and he told me that Celebrex is more dangerous for a heart than Naprosyn and he suggested that I increase Nexium and keep taking Naprosyn. I agree with you. I think that Naprosyn might be the main problem. I don’t want to go to my rheumy /I left him more than a year ago/, so I will have to go to any GP on the street and ask for Celebrex. Unfortunately I couldn’t get Relafen.
    OK, I will ask the doctor.
    Thank you,
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #365587
    Linda L
    Participant

    M.,Phil, other friends,
    The doctor advised me to lower a dose to 100mg twice a day M/W/F. Unfortunately it looks that I must go to the hospital for the iron transfusion, I think today. Now it is 2. They don’t know the reason. Probably they will do gastroscopy and colonoscopy again and won’t find anything. I suspect and tell them that it could be B12 deficiency being masked by folic acid, which I take with iron, but doctors ignore it. It is in my family for generations /grandma from my mother’s side and my mother/
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #365597
    PhilC
    Participant

    Hi Linda,
    @linda L wrote:

    I suspect and tell them that it could be B12 deficiency being masked by folic acid, which I take with iron, but doctors ignore it. It is in my family for generations /grandma from my mother’s side and my mother/

    Are you taking a vitamin B12 supplement?

    Phil

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

    #365598
    A Friend
    Participant

    @linda L wrote:

    M.,Phil, other friends,
    The doctor advised me to lower a dose to 100mg twice a day M/W/F. Unfortunately it looks that I must go to the hospital for the iron transfusion, I think today. Now it is 2. They don’t know the reason. Probably they will do gastroscopy and colonoscopy again and won’t find anything. I suspect and tell them that it could be B12 deficiency being masked by folic acid, which I take with iron, but doctors ignore it. It is in my family for generations /grandma from my mother’s side and my mother/
    Linda L.

    Linda L.
    So sorry you are having such a difficult time. Keep the faith! Sometimes it takes a while to figure everything out, but I believe you will, and hopefully soon. I read something recently about the reason many patients have low iron. Just did a search to find the information about unfriendly organisms eating it… and found the following quoted material from Science Daily report that may (or may not) help your physician or others advising you about the iron problem. Wondering if infusion of iron might just feed more bad bacteria??? This sounds like it needs to be figured out. Maybe Phil will know about this:

    http://www.sciencedaily.com/releases/2008/07/080731140223.htm
    Quoted from link just above:
    Summary:
    While humans obtain iron primarily through the food they eat, bacteria have evolved complex and diverse mechanisms to allow them access to iron. Scientists have discovered that some bacteria are equipped with a gene that enables them to harvest iron from their environment or human host in a unique and energy efficient manner.This discovery could provide researchers with new ways to target such diseases as tuberculosis.
    The research will be published in the August issue (volume 190, issue 16) of the Journal of Bacteriology, published by the American Society for Microbiology.
    “Iron is the single most important micronutrient bacteria need to survive,” Doyle says. “Understanding how these bacteria thrive within us is a critical element of learning how to defeat them.”

    Best to you,
    AF

    #365599
    Linda L
    Participant

    A Friend,
    Very interesting article. Thank you.
    Phil,
    Yes, I take B12 methocobalamin sublingual. Unfortunately My B12 hadn’t been tested before I started taking it, So now the serum B12 results would be invalid. Also folic acid /which my rheumy always prescribed with MTX/ can mask B12 deficiency.
    I’ve read a book “Could it be B12?” by Sally Pacholok and I think it is one of the best medical books I’ve had in my hands. They write about an invisible epidemic in B12 deficiency, not only among older people and people with neurological problems. So many diseases /including autoimmune diseases, MS, dementia, depression, osteoporosis, Alzheimer, diabetes etc are misdiagnosed and after a few days on B12 injections people’s life is saved. For many it is too late though. There is list of symptoms in the book that can stem from B12 deficiency. Not only neurological problems and anemia, but also numbness, tingling, burning sensation in arms or legs, headaches, vision disturbances, vascular problems including DVT and others.
    I spoke to the chemical pathologist working in the lab /like Dr Clarke for Dr Brown/. So kind and clever person. I had no idea that I could even speak to such a person. He didn’t rush. He looked at my results on the computer and told me to do two tests next time: active B12 and a level of homocysteine.
    Linda L.

    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, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

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