Does anyone have any experience of this? A friend with ME has sent me a bit of information/links for this drug so I have had a bit of a read. It is suggested for PMR but there appears to be only anecdotal evidence. I’m unsure whether it is a treatment instead of prednisolone or alongside? Is it worth discussing with my rheumatologist ?
Thanks
There is an ongoing study for gca along with other conditions in the usa.
clinicaltrials.gov/ct2/show...
It is contraindicated for steroids/opioids etc so it would be an unproven treatment for pmr and no pred or dmards.
I think the evidence is not supportive just yet and it looks like it comes with its own side effects which have not been tested at low dose.
I have discussed it with Sarah Mackie who said they have read the stuff about and can find no good reason to support its use.
It’s an interesting approach isn’t it? I’d probably be willing to try something like that. Maybe at the end of tapering Pred at low doses. Give me those endorphins ! 🤗
Been taking LDN for about a year while on prednisone. Has not seemed to make any difference in the PMR.
Hope springs eternal! 🌸
By confidence, I was begging my GP to start me on this before I was diagnosed with PMR. I had heard it being used for fibromyalgia. I thought my issues were the fibro getting worse at the time. I was desperate to try it. Then all hell broke loose and it turned out to be PMR. My husband had gone down to her for the prescription and reiterated the awful state I was in - then she got blood tests done. I had been in her office crying a few days before as I couldn't use my arms and could barely walk. He came back that evening to find me stuck in the bath, I couldn't use my arms to get out. Charming!! I was only thinking the other day would it be any use at some stage. Don't know if it would be any good for inflammation as such, more for pain maybe?
I suspect it would give you a boost post pred. Certainly used for fibromylgia so would help that. There seem to be more options for fibro nowadays. It was amitryptiline or nothing when I was dx.
Pain,in this day and age sometimes I just wonder why it's so hard to find a pain treatment that doesn't give you other problems. I know my usual "looking for the magic pill". !!!
When pain is overwhelming magic seems the only way out. Have they ever bunged you back up to 10mg pred for a couple of days to see what happens? At least that would help you see if PMR keeping you down. If no improvement after a day or two the a 10, 9,8, down to current dose can be done. It seems like it's been such a battle with your drs. I took accidental double dose twice, once was significant at 8mg. I went back up with Dr approval.
Yes I put it up when I had that "crash" there when I finished work. I put it up to 10. Got pain in arms under control then took it back down in stages. Yes true re my so called docs. Between the gp and the rotten rheumy she sent me to!! I know I'll end up back at another rheumy cos the gp won't keep giving me the Pred after her last lecture! I had a magic morning a couple of weeks ago - really weird - I got up and felt no pain, stiffness, heaviness. All very odd and sooooooo lovely. That's what normal people feel like. How nice. Course it didn't last. But it was magic. That's what normal people feel like!! And this wasn't at the night level of Pred.
If you can have one good day you can have more. I often wish I could swap a body with a healthy person for a day just to see the difference.
I have just started splitting my dose. 5mg coated at about 10pm and 1mg uncoated in the morning. Time can vary in the morning but usually within 90mins of waking. It seems to at least give me decent mornings now.
Oh that's good. Interesting! We will take any little bit of good we can get!!!
~Yes I did give this a try as it was a buzz word here in NZ.
Capsules upset tum so had a cream made to apply topically.
In the end did not really notice any remarkable difference so decided to discontinue skin application of cream.
My integrative GP commented recently that she has patients who didn't experience success either - I do not know what their respective conditions are/were .
I do think it is worth a try to ascertain for yourself and have read it appears to work for some other medical conditions.
Good luck ~
In answer to your question re Rheumatologist...........I would say it was a waste of yours and his time, however, as always the decision is yours.
LDN keeps on popping up on and off since I first was made aware of it in June 2009.
I also agree with the post made by PMRpro referring to Sarah Mackie.
Here is some history you might just want to take a look at.
Extract from an article in the Daily Express October 2009:
If you want to read the whole article use the link at the end of this post.
"LDN is Low Dose Naltrexone. Naltrexone was developed to help heroin addicts break their habit. It was while working with heroin users who also had HIV that a New York doctor noticed low doses seemed to boost their failing immune systems."
In August 2009, we asked an MP to make enquiries of the then DHS Secretary of State.
An on-line petition for LDN to be licenced for use in the UK to be allowed was in action at that time.
A good starting point for find out about it all is to put Glasgow University+Low Dose Nalrexone in your search engine and you will find loads of information to look at.
Why we were interested in it was it had been licenced for use in the USA for over 20 years at that time and people in the States with PMR with whom we were in contact had been using LDN for some time. Some said it helped, others said it was useless.
I do know two patients, in the UK, who spent quite a bit of time and money etc who tried it. One said it worked, the other said it did nothing. C'est la Vie.
Daily Express October 2009:
express.co.uk/life-style/he...
Hope this helps.
Thanks for all your helpful responses. I knew there would be some history to it. Will read all the material and might ask for my rheumatologist opinion anyway. It would be useful to hear current thoughts.
I am I am getting ready to start LDN 4 long-standing fibromyalgia. I have been on Prednisone since October 2017 for PMR age 56. Being familiar with the side effects is important and having discussed it with my rheumatologist and PCP decided to give it a try as none of the other fibro medicines have ever helped and have had significant side effects. LDN here in the US is very cheap $5 for the month capsule that is mixed in water. I am currently alternating 8 and 7 mg prednisone trying to get back down to 7 which is where I had my flare at the lowest back in March.
Just an update to my new experience with LDN. Today is day 8. I seem to be experiencing headache / migraine type and nausea each day. It's relatively severe. I've talked with the pharmacist hoping that I can last long enough for it to dissipate. So far I don't feel any benefit but I'm not a ready to abandon yet. Janet
Hi Janet, it is hard to know when to throw the towel in. The dmard I take took 6 to 8 weeks to get to full power as the dose increased. I had terrible nausea and felt bleurghhhhh. 8weeks and 2 days in I suddenly felt ok.
I just read online that the initial release of endorphins can cause nausea etc until your body adapts but it didn't say how long...just initial. Hope it settled soon.
Good morning poopadoop,
Thank you for your encouragement. In case it wasn't clear from my updated post the LDN is for my Fibro which seems to be coming back to life as I have gotten down to 7 mg of prednisone. I have been through I'll fibro RX over the years as I have had those for 25 years but now it seems to be speaking a little more loudly. Dealing with it and PMR I can see from this point on is going to be more challenging. I will hang in absolutely as long as I can hoping that it begins to help and the side effects which there are many subside. Have a great day. Janet
I will be interested to keep hearing updates. I have fibro too (20yrs thereabout). I have a fibro flare but fortunately I have it just about under control at the moment. It would be good if there was something that helps manage it. Good luck!
Did pharmacy not recommend anti nausea meds?
No they didn't but they know me well. In the past they have never done the job and only made me exceptionally sleepy. There's always Ginger capsules and ginger tea.
Good call. Helps mine.
LDN and PMR
Managing Prednisone dose with PMR
Surgery and PMR dose 
PMR with low sed rate
PMR update on the 20 mg dose.
