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 5 years, 8 months ago.

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  • #364702
    cookie
    Participant

    Hi Everyone: Thank you for all of your comments and positive/negative experiences with LDN. I am just in the beginning stages of taking it so I have no real side effects – yet.

    My drug plan does not pay for this drug as it is compounded. I paid $98,00 for 100 pills here in Ontario. It may seem like a lot but my vitamins etc. cost much more and if it will help then it’s worth it.

    Keep well.

    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.

    #364703
    jaminhealth
    Participant

    On the cost of LDN, when I started with it, I learned from the yahoo group how make up the liquid solution….which I did.

    Got a script for the 25mg Naltrexone and split the tab as I made up the solution with distilled water…worked for me and really inexpensive….I don’t remember the 1/4mg tab to water dilution…many others made up their solutions….jam

    BTW: The first dose made me feel INCREDIBLE, and it was all downhill from there.

    #364698
    cavalier
    Participant

    Hi – I just wanted to mention that some folks who are on a LDN FB forum are getting prescribed 9.0 mg’s yep twice the amt. of the 4.5 mg’s – some take it twice a day 12 hr’s apart & others take the 9.0 mg’s all at once. Which raises the question if some folks could benefit from a trial under a Doc’s OK for a bit to see – obviously, this is not a one size fits all – but for progressive diseases there can be a benefit as in what are called autoimmune or Rheumatic diseases – there is often the findings of low endorphins which intitially LDN lowers but the body then reacts in making more – so the logic is that some may need to stimulate even more due to being deficient.

    Logically, one should be at 4.5 mg’s 1st and be tolerating LDN well – which initially LDN at 4.5 can cause symptoms to become worse which is why some titrate up but even so some can expect reactions. Some folks have stated that they got some relief at 4.5 but at 9.0 really makes a difference for them.

    I am one who is now trying to get my doc to OK 9.0 as i tried it split apart after learning of this – you will know if it is of help for me the help is what the 4.5 intially gave me was increase in circulation. This was just this week I tried this & put a call into my doc to ask if he will approve this. I am hoping he my doc will OK this if not, then I have no choice but to stay at 4.5. I also felt more relief from aches & had more energy felt more old self which to me all of this was interesting i would have never thought to try this amt. However in weight a 20 lb dog can take 1.5 mg’s & a heavier dog can take 3.0 like 40 lb’s or slightly more and trials of 50 mg’s were used in animals mostly canines to test toxcidity ahead of them using 50 mg’s for drug abusers with no reports of toxicidity so I do feel the 9.0 in that respect …
    I am hoping my doc will allow me to do this.

    Best – Jill SD, Lyme & bartonella

    #364704
    vera
    Participant

    Hi Jill,

    I just sent you a PM to get the website you found the new info about 9.0 mg on. That is fascinating and I thank you so much for posting that.

    Lori (Vera)

    #364705
    cavalier
    Participant

    I replied via PM.

    No website although literature is sent to you in general about LDN if you request it upon joining. It is a Facebook page – 2 sites maybe more but the 2 I am on – one is Low dose naltrexone for auto immune … and the other is LDN Research Trust.
    The subject was mentioned by some members & their experience –

    Jill

    #364706
    vera
    Participant

    Thanks Jill! I sure appreciate your quick response, too.

    Lori

    #364707
    cavalier
    Participant

    As a FYI got word today that my doc OKed the 9.0 mg’s for me for LDN to take twice a day.

    Am awaiting word for when the MRI for my heart is going to be scheduled. Hoping this will give them good information.

    Jill

    #364708
    vera
    Participant

    Jill,

    Keep us posted on how the 9.0 mg of LDN goes. I am anxious to hear how you do on it!

    Lori

    #364709
    cavalier
    Participant

    So far been a few days is helpful for pain & for more energy which i need help with – Jill

    #364710
    Kalinda
    Participant

    My sister is taking 4.5 mg of LDN. It seems to help her with herxheimer reactions.

    Kalinda

    #364701
    Rosey UK
    Participant

    Hi,
    I am very grateful to the posts on LDN, I’d never heard about it before. Thanks to the lady that started this debate I’ve research to know more. I’ve written to MPs as that’s what we’re asked to do on the http://www.ldnnow.com. I’m seeing my GP on Monday to see how my livers doing and to start the minocycline if it’s gone better, and now will beg for the Neltrexone.
    Are we ok to take other meds with LDN I take prednisolone and so need to get off them I’m so I’ll when I reduce them
    Keep up the good work all!
    Rosemary

    #364711
    Rosey UK
    Participant

    Is Naltrexone ok to take with Prednisolone ?

    Thanks
    rosemary

    #364713
    vera
    Participant

    Rosemary,

    I take LDN and wondered about drug interactions myself before I started. Here is a link I use to check for drug interactions. I ran prednisolone and naltrexone and found none, but you should run it past your doctor of course.

    http://www.drugs.com then click on ‘Interactions’

    Hope you are successful at getting a scrip and that it works for you! 😆

    Lori

    #364712
    lynnie_sydney
    Moderator

    Rosemary this is from the site that has the most useful information about LDN

    Are there any side effects or cautionary warnings?

    Side effects:

    LDN has virtually no side effects. Occasionally, during the first week’s use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

    Cautionary warnings:

    Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. 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 caps + Progesterone caps

    #364714
    Maz
    Keymaster

    @lynnie_sydney wrote:

    Cautionary warnings:

    Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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