Hi all anyone heard of LDN or low dose Naltrexone? There seem to be good results for ms sufferers and other autoimmune disorders although there is no mention of PMR specifically.
It is an opiate antagonistic was was originally put on the market to help addicts but there is growing interest in it to treat autoimmune. Seems to be remarkably low in side effects too.
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blackstone1
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I've been looking into it and last visit to GP left some material for her to read....there are groups online that you can learn from too.....I am looking into it for chronic pain control....
I am in the states and my Rhuemy totally freaked out when I mentioned this drug, told me to see a pain Dr .....that was out of his field. Not going to be an option around here, i wasn't looking for pain control but better quality of life. I am feeling better now so not an issue. I am taking plaquenil and I think it's helping.
As PMRPro says this subject comes up every so often and we hear how wonderful it is (or not). So far no one has come up waving the flags and saying it is a real must. It just simply fades away until the next person mentions it!
I am taking 13.5 going to 13. The plaquenil is supposed to help reduce inflammation and is sometimes used as a steroid sparer. I don't notice any side effects. I have been on steroids since February of last year.
Every few months this question comes up. There are one or two people who are on it that I know of - one was put on it by her GP in Norway but I don't know how she is doing. One of the top PMR rheumies in the UK has investigated the claims - but thinks there are more claims than substance to them.
As far as I know you need a prescription to get it - and so you need a doctor to agree to give you the private prescription.
I used it and for the first two days it was fantastic then my pain actually got worse. but then I have not been officially diagnosed with PMR but have many of the symptoms. And my system responds a lot differently to medications than most people's
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