NRAS
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Ra sufferer

Has anyone tried low dose naltrexone I have done a lot of research utube and read the ldn book and honest medicine by Julia schopik worth reading and researching I approached my senior rheumatologist she showed no interest which I expected through my research they seem more interested in giving you all the toxic drugs ldn is non toxic and only side effect is vivid dreams which is temporary sounds very promising I am definitely looking into when I get out of rehsb

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Good to hear Rocky.

How is the rehab going for you, in terms of you're knees?

Good luck with things .

Marie

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As I said in previous post they don't do much except for physio so going home I feel much better having my own freedom and concentrate on getting myself better in my own environment I am loosing energy here not my weight is up and down my emotions are everywhere please don't tell me any different I know my own mind

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Hello Rocky. Ask your senior Rheumatologist again & demand an answer. Maybe a family member can be with you when you ask again? It's always good to have a second pair of ears. She needs to explain to you why she isn't interested in LDN. You do deserve an answer from your rheumatologist, otherwise you are left searching the web....and there are people out there willing to take your money as you suffer.

Sending you a big Canadian hug :)

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Canada I wish I could come there I am a big arrow fan have wrote to Stephen amell with a replied paid stamp no reply

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Hi Rocky - I have done a lot of research and think it is absolutely a viable way to go... Search on here and you will find a lot of information from others about it

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I was on low dose naltrexone for 3 months with no success. I had to stop because I was experiencing bone damage from my RA and was forced to go on Methotrexate, etc.

It seems a lot of people do have success with LDN. There is a good facebook group with many users of LDN. I think the group is called something like "LDN got endorphines". If you search facebook you'll find it.

Some say it can take around 6 months for LDN to work, so maybe I didn't give it enough time. I would have stuck with it if it wasn't for the bone damage. I didn't have any side effects from the LDN though, and I like that it helps regulate your immune system rather than suppressing it. It also seems to be not as taxing on the body, liver, etc.

I say give it a try. My RA doctors wouldn't prescribe it because of the lack of FDA approval for RA, and because there hasn't been enough studies done. I ended up having to find an online doctor to prescribe it. Good luck.

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I remember you were reluctant to take MTX... Has it been ok, and more importantly is it working?

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Hey Helixhelix. Good memory :) Yes, I've been on methotrexate for almost 4 months now. No major obvious side effects or benefits. My ankles and knees are starting to feel better, but my neck and back are constantly hurting. Mornings are bad too. Constantly stiff and achy. I guess this is as good at it gets.

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No! Never think like that....if MTX doesn't do it for you soon then you have to keep pushing your rheumy to find the best drug for you.

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I hear what you're saying. I think the only reason we're giving MTX more time is because I'm starting to see less pain in the ankles and knees. I'm also wondering if there's a possibility that maybe the MTX is helping some, and that my neck and back pain could be non RA related. If I stop the MTX and start on something new, any possible progress will be lost. I've read that it can take up to 6 months for MTX to work. Maybe the 6 month mark will be time to re-asses and consider a biologic or something. Same with the naltrexone... I wish I could have given it 6 months, as some people don't feel the benefits until 6 month to a year. Though the bone damage I was experiencing resulted in me having to go on MTX and quite the LDN. I suggest to anyone going on LDN to get periodic xrays to make sure they don't end up with permanent bone damage to their joints like I did. No one in the LDN community told me to get this done. If I had known it could have prevented me the damage.

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Hello Needleform,

Sorry that you gave up on LDN. Many take Mtx with LDN with good results. Seems that LDN is seldom enough alone. Elimination diet and LDN together has been a better choice. How is it with Mtx has it stopped bone damage? This is also a relevant question since this is not always the case. All the best.

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Hi Simba1992. Thanks for the reply. You've been very helpful in these forums. The reason I gave up on the LDN is because of the bone damage showing on x-rays. My doctor advised against the LDN + Methotrexate because there are no long term or extensive studies done based on this combo. I have thought about giving it another try though. I also tried LDN + diet restrictions with no success. Regarding the MTX and if it has stopped the bone damage, I'm not sure, as I've yet to get any new x-rays. I hope to get some soon though. Thanks!

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