Anyone tried LDN for PMR?
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I've recently stumbled across some information on something called LDN (low dose naltrexone) which seems to be positive for the treatment of a whole host of autoimmune conditions, PMR possibly being one of them. Naltrexone apparently is a medication used in opioid and alcohol addiction treatment but in high doses, 50mg or thereabouts whereas the dosage for autoimmune conditions is anywhere from 1.5 to 4mgs. While not widely studied, there's success in the groups that have tried it and from medical research papers that I've read and postings from people that are taking it, it's very encouraging. The side effects are minimal - vivid dreams when first taking it (better than osteoperosis, cataracts, etc.) and some people get nauseous if they drink alcohol (bummer) although many don't. You can stop taking it abruptly with no adverse effects. I've been off the prednisone for a month or so but still have some aches and stiffness and I really don't want to return to steroids. I'm thinking about asking (coercing probably) my rheumatolgist to let me try it if my discomfort continues. I haven't seen anyone on this forum mention it. Just curious if anyone has tried it. Thanks, All.
3 likes, 39 replies
sandra28555 diane67131
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diane67131 sandra28555
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FlipDover_Aust sandra28555
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If you are still in the first week, it's no surprise you feel dreadful!
I hate to say this, but PMR is not going to go away by taking a few pills. It's a real roller coaster..... you will come to terms with it, but don't beat yourself up if you feel sorry for yourself - ok?
We are here when you need us.
sandra28555 diane67131
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diane67131 sandra28555
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christine_fay diane67131
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christine_fay
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diane67131 christine_fay
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Anhaga diane67131
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diane67131 Anhaga
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christine_fay Anhaga
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lodgerUK_NE diane67131
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3 people I know tried it - 1 in the USA and 2 on UK.
It worked for 1 in USA and I in the UK. It did nothing for the 3rd person.
diane67131 lodgerUK_NE
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lodgerUK_NE diane67131
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We had a tremendous discussion about it with people in the USA, people with AIDS, drug addiction et al. My MP wrote to the Secretary of State for Health at the time for clarification as to why it was used for specific purposes only. The reply was that a person could ask their GP for use for a non-specific illness, but they would have to sign that it was their decision and if anything untoward occurred, neither the GP or Pharmacists were in any way responsible.
It is licensed for use in the UK for specific purposes only.
What finally made me make that decision was I had previously decided to stick with pred, no steroid sparing agents, no ' just in case stuff.'
I reckoned my body had enough to deal with, GCA and Pred (and the possible 82 side effects and has it had been around a long long time all the side effects were well known) Pred is and still is currently the only drug that stopped me from losing partial or total vision permanently.
If anything else came along, ie kidney infection, pseudo gout etc, we would deal with them as it would have been dealt with taking into account I was on long term pred.
That course of action was and is a very personal decision. My medics were not happy, but eventually they respected my decision, when I pointed out, politely, it is my life, my body and after listening and taking in all they had to say - ultimately it is my choice.
I had GCA for 5 years and have been in remission now in 6th year.
Research is currently being undertaken on new drugs to see if they will work. The result to date is ' steroid ' sparing yes, replacing steroids, not yet. It will come one day - but it takes time.
diane67131 lodgerUK_NE
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lodgerUK_NE diane67131
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diane67131 lodgerUK_NE
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