Pred alternative for PMR: Having had multiple bad... - PMRGCAuk

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Pred alternative for PMR

yoganan profile image
16 Replies

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.

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yoganan profile image
yoganan
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk 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 profile image
Amkoffee in reply toDorsetLady

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

yoganan profile image
yoganan in reply toAmkoffee

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

PMRpro profile image
PMRproAmbassador

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 profile image
yoganan in reply toPMRpro

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 profile image
PMRproAmbassador in reply toyoganan

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 profile image
jinasc in reply toyoganan

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 profile image
Megams in reply toPMRpro

~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 profile image
PMRproAmbassador in reply toMegams

Oh, two then!!!!

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

Megams profile image
Megams in reply toPMRpro

~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 profile image
PMRproAmbassador in reply toMegams

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 profile image
Megams in reply toPMRpro

~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 profile image
PMRproAmbassador in reply toMegams

healthunlocked.com/pmrgcauk......

powerwalk profile image
powerwalk in reply toPMRpro

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 profile image
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 profile image
PMRproAmbassador in reply toScarter

Did you notice this post is over 2 years old?

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