Pred alternative for PMR

[yoganan]

Having had multiple bad reactions on Pred I was directed by a naturopath to LDN. It has been two months - first on 1.5 @ day & now on 3.0-with the option to up to 4.5. This along with restorative yoga, low weights & a stationary recumbent bike seems to be working. My right shoulder does have some limitations: however, it had atrophied prior to diagnosis and may never come back all the way although definitely useable.

[DorsetLady PMRGCAuk volunteer]

If LDN is working at the moment for you, then fine, but do please be aware that if it’s not controlling the inflammation caused by your underlying PMR - which is very likely - you maybe be building up problems for the future.

The blurb says it helps a dysfunctional immune system - well PMR is more serious than just dysfunctional.

Left untreated it can cause lots of issues, not least it’s very close friend GCA, and that left untreated can result in blindness (partial or complete). I know through personal experience (untreated because undiagnosed, not because I didn't want to take steroids).

I hope it works, and please keep us informed of how things go for you. If you do need to return to steroids, we can advise on side effects as well.

[Amkoffee in reply to DorsetLady]

Low-dose naltrexone can cause stomach problems isn't that right? What other side effects does it have?

[yoganan in reply to Amkoffee]

Not with any one I know taking it. Pres did for me-big time

[PMRpro Ambassador]

There is no evidence that LDN works for PMR and we have had a few people in the past who have tried it or intended to try it. It it had worked so well for them I would have expected them to come back and spread the word. In fact, only one person ever returned to say it didn't work after all.

I wish you all the best with it though.

[yoganan in reply to PMRpro]

3 months in & good. Pred reactions untenable. Will post as I go along. Rheumatologist not happy with me but internists & allergist delighted with turn around.

[PMRpro Ambassador in reply to yoganan]

But please do watch out for signs of GCA. Because I wouldn't wish anyone to risk that on anything except pred - because no side effects of pred (except psychosis and that CAN be managed when the docs are on top of their game) are worse than irreversible loss of sight.

[jinasc in reply to yoganan]

I was altered to many years ago by a lady in the USA who used another forum in regard to LDN.

As is was not licensed for use in the UK for PMR or GCA .

I got my MP involved at the beginning to see if we get get it trialed in the UK.

It was originally developed for HIV. Stanford University was involved with the development.

I know the two people who tried it in the UK they both managed to get special permission and find a pharmacist who would then fulfill the private prescription.

As far as I remember there were only about a dozen who would fulfill the private prescription. It did not work for either.

As PMRpro says, please let us know how you get on, but watch like a hawk for the GCA symptoms.

[Megams in reply to PMRpro]

~PMRpro - think that person may have been me who started with high expectations of LDN - as originally reported here starting my steroids ulcerated gut lining as colonoscopy revealed.

With history of GI issues became desperate to try LDN despite there not being a lot of evidence (research wise) indicating any success for PMR directly.

Sadly my two week or so intake of LDN proved fruitless. In saying that well worth trying despite it all.

PMR is not a simple illness nor a walk in the park - steroids a must to keep inflammation under control.

Good luck yoganan - wish I could have reported more positively in favor of LDN- please keep us posted ~

[PMRpro Ambassador in reply to Megams]

Oh, two then!!!!

Did you have any problems with it? Maybe 2 weeks wasn't long enough ...

[Megams in reply to PMRpro]

~Memory in detail hopeless unless I go & dig out diary in attic & its 10pm so too dark to go hunting. It may have been fraction longer than 2 weeks with oral dosage. Nausea main issue thus affecting intake of food & fluids as always case with me.

Next best solution to sort nausea issue was a prx'd LDN cream which I was told used for children satisfactorily for other medical issues. Had this made up but I didn't notice any difference plus with the change of delivery system made it too difficult to ascertain exactly how effective it was or could be!! At time (abt 2016/2017) it was pretty new here in NZ.

Alongside the LDN I was taking a low dose steroid (hydrocortisone) made up in acid resist capsule to leave gut alone (my expense) and where I still remain taking 5.5 years on but now on a higher level. I do wish the LDN had worked, would have answered my prayers

When sharing the LDN story with my GP (young switched on German lady) she commented that LDN had not been successful with PMR. I switched to her 3 years ago as she is an Intergrated Dr who speaks my lingo in the holistic sense

[PMRpro Ambassador in reply to Megams]

Have you commented on my post about capsules?

Could you ask her if there is a study on the LDN or is that anecdotal? Sarah Mackie said she'd read a lot about it and come to the conclusion it was unlikely to be useful but never mentioned any studies.

[Megams in reply to PMRpro]

~Can you lead me to your post PMRpro on the capsules? I obviously didn't see.

The Dr I originally consulted was recommended to me by another Intergrated Dr. who has since retired. I travelled way out of Auckland to see this man who was absolutely excited re LDN & gave me a newsletter at the time on lots of factual info which I will need to scratch my brain in remembering if I have filed this somewhere in my med files & look tomorrow for you.

I may be seeing my lady Dr this coming week (if poss) as we are in lockdown COVID-3 presently. I need to see her so will make a note if she can give me any further research and/or anecdotal info.

The LDN capsules were especially made up for me by the same Pharmaceutical compounding co. who make up present meds for me.

[PMRpro Ambassador in reply to Megams]

healthunlocked.com/pmrgcauk......

[powerwalk in reply to PMRpro]

I couldnt get on with it at all. Tried it a couple of different times, my new rheumy prescribed if to try mainly for the fibro pain moreso than the pmr.

[Scarter]

Stay with the LDN as it works ! I’m on 4 mg nightly. It helps sleep which helps the body. Been taking it for 6 months and sleep all night now. I had shoulder pain that woke me up but LDN allows me to sleep now.

[PMRpro Ambassador in reply to Scarter]

Did you notice this post is over 2 years old?