Home Forums General Discussion Low Dose Naltrexone – hope for autoimmune diseases eg RA

This topic contains 48 replies, has 14 voices, and was last updated by  cavalier 6 years, 1 month ago.

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  • #306952
    cookie
    Participant

    My AP has recommended that I try LOW DOSE NALTREXONE capsules at a dosage of 1.5 mg. These are being compounded for me by my pharmacy. Apparently they help a host of illnesses RA being one. See the link http://www.lowdosenaltrexone.org

    Has anyone tried this protocol? Any successes? Thank you for your replies.

    Cookie

    Diagnosed with RA in 2004. Taking minocycline M W F 100mg 2xday. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, kaprex, magnesium taurine, curcumin, msm, GLA, vitamin C. Using topical ointments for pain such as Liv Relief, Croyderm and Voltaren. Eating gluten free bread, lactose free milk, lean meat such as chicken and fruits and veggies. Exercising 5 times a week. My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes.

    #364686
    cavalier
    Participant

    HAVE to make this fast – do a search for this subject of LDN on the forum you will find posts. 1.5 is generally the starting slowly loading dose – most are on 4.5 to get where they find help.

    Everyone is different but I am on LDN 4.5 & it is helpful but i cant answer more than this right now have my hands full.

    Jill SD Lyme & bartonella

    #364687
    Eileen
    Participant

    Hi Cookie,

    If I may ask, how far into AP are you? I didn’t add LDN to the mix until about a yr. into it. I pushed for it, but dr. said she wanted me to go a little longer without it. She agreed. Started at 1.5 and am up to 4.5. It’s been a wonder drug for me. It cleared up my almost 10 yrs. of running to the bathroom every time I ate something. LDN wasn’t easy on my body at first — headaches, jittery. Some people have lucid dreams — me being one of them — I mean crazy dreams that would wake me almost in a panic state, but they subsided over the course of a few weeks. LDN needs to be taken after 9:00 p.m.

    Hope this helps.

    Eileen

    #364688
    cookie
    Participant

    Hi Eileen: I have had RA since 2005. I hope the drug will work for me. I was told that perhaps I may have difficulty sleeping – I hope not. Glad it is working for you. That is very encouraging.

    Thank you

    Cookie

    Diagnosed with RA in 2004. Taking minocycline M W F 100mg 2xday. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, kaprex, magnesium taurine, curcumin, msm, GLA, vitamin C. Using topical ointments for pain such as Liv Relief, Croyderm and Voltaren. Eating gluten free bread, lactose free milk, lean meat such as chicken and fruits and veggies. Exercising 5 times a week. My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes.

    #364689
    dixiegirl
    Participant

    LDN has been amazing for me! It cuts out all of my morning stiffness… instead of limping to my alarm clock, now I can just hop out of bed! I love that stuff. =) No side effects either… it’s such a low dose. I can’t miss it for one day or all my morning swelling from 6 am to noon will come back with vengeance.
    I have learned that I have to take it the same time every evening or it will backfire. If you take it too late, it works the opposite in your body–making you feel worse. So if I’m traveling, I have to adjust for that and make sure I take the LDN at the same time as usual so I don’t get my body out of wack. I always take it right before I go to bed.
    Hope you have luck with it!
    oh–I was taking 3mg and it helped alot. When I raised it to 4.5, my symptoms got so much better.

    #364690
    cookie
    Participant

    Hi Dixie Girl: I just started the LDN at 1.5 mg yesterday. I hope I get the same results that you have experienced. It would be so nice to wake up without aches and pains. How long did it take for you to experience relief from pain while taking the LDN???

    My AP has me on doxycycline along with lots of vitamins and anti inflamatories. Sometimes I feel as though I am taking too much stuff but I guess I need it.

    Thanks for your feedback.

    Cookie

    Diagnosed with RA in 2004. Taking minocycline M W F 100mg 2xday. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, kaprex, magnesium taurine, curcumin, msm, GLA, vitamin C. Using topical ointments for pain such as Liv Relief, Croyderm and Voltaren. Eating gluten free bread, lactose free milk, lean meat such as chicken and fruits and veggies. Exercising 5 times a week. My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes.

    #364691
    dixiegirl
    Participant

    I was on a real rocky road when I started LDN. I was flaring up really bad. Because of that, I’m not sure how soon I started feeling so much better. I think it was within two weeks after I started the LDN. I did start with taking 3mg. If you don’t notice much of a symptom change, maybe you need more… If you think it is helping some, then you can ask your doc to increase the prescription, or try taking two pills at once for a few days to see if it helps more. I raised my own prescription from 3 to 4.5 for a week, just to see what would happen, and I have never gone back. My doc is fine prescribing 4.5mg for me (the maximum dose that can help RA). So maybe that would help too…
    Hope the LDN helps you soon!I think it should…

    #364692
    cookie
    Participant

    Hi Dixiegirl:

    My AP prescribed 1 capsule of 1.5 mg dosage for two weeks, then 2 capsules for 3 weeks then 3 capsules for maintenance which would total 4.5 mg of LDN. I will keep you posted as to the results. Hope it works.

    Cookie

    Diagnosed with RA in 2004. Taking minocycline M W F 100mg 2xday. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, kaprex, magnesium taurine, curcumin, msm, GLA, vitamin C. Using topical ointments for pain such as Liv Relief, Croyderm and Voltaren. Eating gluten free bread, lactose free milk, lean meat such as chicken and fruits and veggies. Exercising 5 times a week. My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes.

    #364693
    Anonymous
    Participant

    Some information on Low Dose Naltrexone (LDN) on Dr. Mercola’s site:

    http://articles.mercola.com/sites/articles/archive/2009/01/13/can-ldn-really-help-multiple-sclerosis-rheumatoid-arthritis-and-other-autoimmune-diseases.aspx

    Dr. Mercola is mentioned in Scammell’s book, Chapter 7 – that’s how I got to his site in the first place. Dr. Mercola was the first (or one of the firsts) to suggest using Minocycline (Minocin in particular) instead of tetracycline.

    Hope this helps.

    #364694
    jaminhealth
    Participant

    I had a really hard time with LDN, gave it a good 6 month run….worst constipation EVER in my life…and then got nasty joint and muscle pains, worse than I have now.

    Never got past 2.5 mg, when I got that high, the joint pains got worse…..started at .5mg and worked up.

    I gave up, but boy did I try…..we are all different for sure.

    I even took in the mornings since it kept me up half the night….I need my sleep.

    The yahoo group was very helpful and kept prodding me on, but it just failed me, or I failed it. I’ll never
    try it again.

    #364695
    vera
    Participant

    LDN has been amazing for me at 4.5 mg. I noticed a difference within 12 hours of taking the first dose. With AS, it has tremendously helped my back pain. There are a couple side effects for me – dreams, and some sleep problems, but in comparison to the horrible pain, I can live with these issues. I take melatonin in divided doses at night, and also l-theanine, and they have helped with sleeping.

    It may have been on the LDN website, not sure, but I read that it can take up to 18 months for LDN to really kick in. And herxing is possible – which I did experience off and on.

    I realize not everyone’s experience is going to be the same, nor can we all tolerate LDN. BTW, it is not an end all for me, and I do many other things, like AP, supplements, no-starch diet, etc. But, LDN is one thing I won’t give up if I can continue to pay for it. Unfortunately, my insurance does not cover LDN anymore since it’s a compounded substance, so instead of paying $4 like I used to, I now pay $30. But, in my experience, it is worth every penny for me.

    Lori

    #364696
    jaminhealth
    Participant

    Lori, I’m so glad LDN really works for you. I sure tried and hoped upon hope that it would work for me, but it didn’t…

    I tried to get my sister who is challenged with MS to get on it, but she didn’t….I understand MS patients do very good with LDN….sad for my sister not doing it…..she’s getting progressively worse with her treatments….jam

    #364697
    vera
    Participant

    Jam, I first heard about LDN when I saw a clip about MS and LDN! After a little research on my own, was convinced to give it a try.

    I certainly understand your frustration about not being able to get someone with MS to at least try it. I have two friends with MS who won’t try it either; and several friends with autoimmune diseases who also won’t go there. Many people I know will only do what a doctor says – period.

    You are to be commended for giving it such a good try!!! And for suggesting it to others, even if it didn’t help you!

    Take care,

    Lori

    #364699
    jaminhealth
    Participant

    Lori, my poor sister went thru $1000’s upon $1000’s of drugs from her NYC MS specialists….and LDN is so inexpensive….she has regressed so badly, but I can do no more….

    I tried so hard to get it to work for me hoping that it would keep me from a hip replacement, but the surgery won out….

    #364700
    Debbie star
    Participant

    Hi to you all…… yes i got excited about LDn too… tried to get my sister in law with Ms to give it a go and others… but they havent…

    It seems to me its only a rare bunch who break out and try and find other avenues!!

    I was trying it out on myself and had hoped i could let them all know from personal experience how great it was…

    I had such a hard and disapointing time on it, I slowly got up to 3mg…. It did give me great sleep (after the initial vivid dreams), but even on .5mg i just felt wierd and not myself.couldnt judge things properly or function..I took it for 3months… I have come off it now and i really dont know if it helped noticeably with the pain… My stiffness and muscle pain seemed to get worse when i was on it..I didnt know if it was the LDN or the scleroderma or herxing, so i wanted to come off and see where i was at…

    I also had increased urination especially at night the more i took… This was hard for me too as i had just had an operation this year to try and stop this, as i had a problem with it for 30years and wondered always if i had affected my sleep (i had the CFS) and knew that the disturbed sleep must be upsetting my sleep and healing pattern at some level!…

    Unfortuanately having practically fixing this situation i still feel just as fatigued (so even though it helped me greatly it didnt seem to change my scleroderma symptoms)……

    So, it may not have been for me, but i have heard so many good stories on it!!

    So good luck and i really hope it works for you

    Debbie

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