Low Dose Naltrexone

[PaulinaCanada]

Wondering if anyone has had experiences using LDN for PMR ? I was recommended to check into this with my GP and Rheumatologist by a Geneticist friend who has Grave's disorder and this has done wonders for her. For more info ncbi.nlm.nih.gov/pubmed/298...

[Hidden]

Hi LDN comes up once in a while....here's the last discussion..🌻

healthunlocked.com/pmrgcauk...

[jinasc]

Hi Poopadoop..............

For me, I first came across this one 18 months into GCA, that is June 2009 this keeps on popping up. Hope she follows the link.

The more I read up on it, it looks to me like a miracle cure all.

"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."

Stanford University developed it when they were looking for medicines for Aids.

On the LDN thread their are 6,331 posts about it.

[Hidden in reply to jinasc]

They do seem to be testing it on GCA in California but inconclusive. It would probably be more useful for my fibro!

[jinasc in reply to Hidden]

I actually think fibro is worse than PMR and all I would say to you.........is be careful.

[Hidden in reply to jinasc]

Happy as I am.so not ready to add something else to the drug mix just yet!🌻

[Chrob in reply to Hidden]

Nor me .

[KellyInTexas in reply to jinasc]

Quite often ,” fibromyalgia “ can be an easy catch all for Sjögren’s syndrome, another autoimmune disease that causes all the aches and pains.

It can start as ,”sicca syndrome “ and does not always have to be antibody positive.

Do you know if your Rheumatoligist has mentioned sicca syndrome to you, or Sjögren’s syndrome?

Is there is fine line between fibromyalgia and Sjögren’s syndrome with PMR, or is it very clear that the two are completely different entities?

The reason I ask is because if it’s Sjögren’s syndrome, perhaps a tiny bit of hydroxychloroquine might help with aches and pains, and keep a bit of joint deterioration from encroaching? Even if it’s just by a small margin?

( I’m still on a very big learning curve with PMR so I may be very off base with this question- but there may be a slight overlap here...)

[PaulinaCanada in reply to KellyInTexas]

I have not discussed this yet with my Rheumatologist, but will with my next appointment in August.

[KellyInTexas]

youtube.com/watch?v=Rkshs4A...(Not working as expected?)

You might have a look at this, from Dr Chris Steele Steele. I know several women with Sjögren’s, RA and APS/ Lupus as a trio diagnosis who are prescribed LDN with success. ( they are on other blood thinning medications as well, but are also prescribed LDN as an boost to the hydroxychloroquine .)

***edit: sorry, I see the video is unavailable. If you google Dr Chris Steele with the search word LDN you will see the videos pop up.

[PaulinaCanada]

thank you for this ... yes if you go to You tube directly it can be viewed there.

[PMRpro Ambassador]

I know it is sometimes used in mainstream medicine in Scandinavia and a patient there did try it but never came back as promised to say how it turned out. Which I suspect means it didn't make much difference - because if I found a good option for PMR I'd be shouting it from the rooftops!

Prof Sarah Mackie said at one point they had read all the available literature and found nothing compelling. That link is new work I suppose in 2018.

[lemarie1]

I have been on LDN for about 2 weeks now. I am not sure if it has helped but I think that perhaps it is along with the other things I am trying.

I developed disabling PMR in late March of this year (2019). Started on 20 mgs Pred and now down to 6 mg. So that is 4 months to 6 mg. My blood tests for CPR and ESR were high when my PMR was diagnosed. When I got my tests just 3 days ago, they were now both normal.

I also took high dose Acyclovir for a month at the beginning of this journey after reading an article about Shingles and PMR. I did get the Shingles vaccine about a year ago.

I did both of these things on my own without Doctors approval and all I can say is I think this has been a pretty rapid improvement for this disease.

One other thing that I will mention but that I don't know whether it might have made a difference is I have been a Migraine sufferer my whole life. Recently I also was given a prescription for a once a month shot of AIMOVIG which I took about 2 weeks ago. Maybe it is helping also. This is all I can tell you about AIMOVIG;

Calcitow does Aimovig work?

In your body you have CGRP (calcitonin gene-related peptide) and CGRP receptors

CGRP attaches to and activates the receptor, which may play a key role in migraine

Aimovig blocks the CGRP receptor so CGRP cannot attach to it

Aimovig is the first and only migraine preventive treatment designed to block the CGRP receptor.

So basically I think it blocks Calcitonin reception.

Because I am taking so many things it is hard to know what is and isn't helping.

I am waiting to see if the migraines come on less often. So far it seems so!!!!

And lastly more than anything else. I pray for healing often. God is our healer.

[PaulinaCanada in reply to lemarie1]

Thank you for the info ... I have had PMR since March 2018, surprised at the quick reduction on Pred for you , as I am back on 5 mg. How did you manage to go on the Acyclovir without the Doc knowing , didn't you need a prescription for this? My Rheumy recommended both Shingrix and Prevnar 13, which I had last year June.

[lemarie1 in reply to PaulinaCanada]

I got the Acyclover from my mom which got it when she had shingles. She had a large quantity. I got the LDN from an online pharmacy. Yes, I am gutsy or dumb but it was an American made product.

[PMRpro Ambassador in reply to lemarie1]

They claimed ...

[lemarie1 in reply to PMRpro]

Yes, you never know what you are getting really.

Thanks for all your well taken comments of help on this site. So glad we have this blogsite.

[Linny3]

I have tried this twice. Once years ago for fibromyalgia and about a year ago for PMR. I did not find that it helped in either case. Everyone is different, might work for you.

Good Luck

[daworm]

I researched it and I saw nothing conclusive one way or the other for PMR so I stuck with pred...