LDN?

[Julie_R]

Anyone here have experience with LDN without prednisone?

I also have fibromyalgia which reacts violently to pred or anything steroidal (DHEA, licorice, Vitamin D even!) and severe osteoporosis.

I've had symptoms for 7 months. Taking 80 mg aspirin (as 40 mg x 2) daily as there is some evidence that it can control GCA outbreak, and I had some minor sx at first (headache, cough) but they are gone or much reduced. Also various alternative Tx. Legs much better, shoulders worse, but that may have to do with too much sitting at first & too much computer recently.

DMARD's don't have much clinical evidence of effectiveness.

LDN has evidence of effectiveness for fibro, especially cases with elevated sed rate (which I have). So maybe I could hit a two-for-one.

Still waiting for my first rheumy appt (rural USA) for definitive dx. This gives me a chance to research before the appt.

Thanks,

Julie

[Celtic PMRGCAuk volunteer]

Julie, I haven't got any experience with Low Dose Naltrexone although have heard mention of it some time ago. I believe whereas it has been in use for some years in the US in illnesses including MS, it is fairly new here in the UK. I guess that if you are also suffering from Fibromylgia, with evidence of LDN being an effective treatment, then there is no harm in trying it in the hope that it will also help with any PMR pain. On the other hand, you mention GCA and, if your elevated ESR is due to inflammation caused by GCA, then that needs to be addressed and treated urgently to protect your eyesight - Prednisolone is the most tried and tested medication for reducing such inflammation. If you haven't had a CRP blood test (C-reactive protein), then do ask for one as CRP is considered to be a more specific marker of inflammation than ESR.

[jinasc]

Yes, LDN is licensed for use in the UK for addiction and in some cases for MS.

Otherwise you have to talk your GP into agreeing to give you a prescription for one of the few chemists in the Uk who will supply it, with a waiver.

One lady I know did pay for it, but she only had PMR.

Put LDN Stanford University USA into your search engine. They did the research and are still doing research on it.

[Julie_R in reply to jinasc]

Thanks for both your replies. I am an avid web-searcher, mostly in the medical literature (pubmed from US Nat'l Institutes of Health is my main source). I was aware of the Stanford research. There is more information since the posts two years ago on this (pmrgcauk) site. One good reference:

"The Use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain", published in Clinical Rheumatology in 2014. This is where I found the suggestion that LDN should be subjected to clinical trials for polymyalgia, because in the other conditions in which it has been found effective, it was most effective when sed rate is higher. But we are in the beginning stages here, which is why I was looking for anyone with experience.

I'm not a novice at this stuff. My fibro is actually secondary to my MS, which I have been managing relatively successfully for over 30 years (very strict anti-inflammatory and very-low-saturated-fats diet, herbs/supplements, etc). I have rotten genetics, so these are not my only medical issues, but I take no long-term and very rare short-term Rx or even OTC meds. As a biologist, I make sure there is physiological basis for everything I try, as well as theorizing on the probable biological reason for my negative reactions. (We are far more individual than we realize!) I have learned a tremendous amount this way

As to the GCA threat, it is possible to flirt with GCA, which is what I think I did. I realize it can flare and become dangerous at any time, just as my MS can. Hence the low-dose aspirin, which I found in the medical lit, although they admit that the evidence is solely anecdotal. But this is not my first experience with neuro-immune vascular dysfunction, so I'm not in the dark.

Yes, I have been tested not only for sed rate, but CRP (both twice, both high, and both increasing the second test), and other differential dx blood tests (for RA, myositis, etc). I took a medical journal article to my GP (a nurse) to figure out which tests she should order. But she is retiring and I've been transferred to the clinic doc who is not happy we did this. (I will have to find a new GP!) I get no more tests until I see the rheumatologist. But as I said, I'm used to managing my conditions, and this gives me a chance to experiment and research options.

Oh, and I'm in California. So my access to LDN will have to be a bit different...if I do decide to try it.

Thanks to both of you for your info and concern. I never know where I'll find that key that opens the next door.

[jinasc]

PMRpro is currently in China I will email her this link to your query for when she returns.

I and another lady who lived in the States did a whole load of research into LDN over 7 years ago. Unfortunately there have been no clinical trials for PMR and probably won't be. LDN will not be profitable for big pharma, so not trials unless they think there is money to be made.

[Julie_R]

Update: The rheumy said PMR, but no dx without 2 weeks on pred; I said no. He said I should go back to my GP until I got bad enough to change my mind! But he did re-run my blood tests.

My anti-CCP (also called ACPA) was weak positive in March (still compatible with PMR), but is now moderate (almost high) positive. So it looks like I have polymyalgic-onset rheumatoid arthritis. Rats! The rheumy's nurse said I'd be put on pred for sure if I came back (due to high ESR & CRP), so I won't.

I found a naturopath here who is going to evaluate me and does rx LDN. So I'm most likely going to try that first. (Plus I'm doing various foods & tweaked my diet overall--seems to be helping a little.)

In the US, naturopaths are covered by virtually no insurance, but I'm ready to put my $ where my beliefs are. The journal article I mentioned above recommended trying LDN on both PMR and RA. So wish me luck!