Anyone tried LDN to taper?: Hello Has anyone tried... - PMRGCAuk

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Anyone tried LDN to taper?

MalloryMoss profile image
16 Replies

Hello

Has anyone tried Low Dose Naltroxene (LDN) to taper off Pred? I have tried searching and can find info on LDN on Health Unlocked generally, but wondered if anyone has used it on this forum. Thanks

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MalloryMoss profile image
MalloryMoss
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Now you have asked, you can see related posts. Top on list from papadapadoo is quite interesting

MalloryMoss profile image
MalloryMoss in reply toDorsetLady

thank you!

SnazzyD profile image
SnazzyD

Now you’ve put it in your title, you should now see other posts about using LDN. As you can see it has come up before, happy reading!

MalloryMoss profile image
MalloryMoss in reply toSnazzyD

thank you!

PMRpro profile image
PMRproAmbassador

Been discussed a few times - and my daughter who uses it (not for PMR) says there are loads of PMR patients on her forums.

MalloryMoss profile image
MalloryMoss in reply toPMRpro

thank you :-)

Hopeful424 profile image
Hopeful424

Actually, I did try it and did not get a significant response. I may not have used it long enough. As each person is different, I would give it a try. Very little, if any ,side effects to this usage at low dose.

MalloryMoss profile image
MalloryMoss in reply toHopeful424

Thanks, I’m going to give it a go. Will report back

Catsrcool profile image
Catsrcool

I did try Naltrexone 1.5mg then was to increase until I reached 4.5mg but it made my fatigue worse, so I didn’t continue using it.

MalloryMoss profile image
MalloryMoss in reply toCatsrcool

That’s interesting thank you, I have no fatigue at all so will see how it goes.

Wizards profile image
Wizards

There were a couple of us 7-8 yrs back going to try it. I gave my GP the information and he gave me a prescription however was trying another new drug which worked so never started it.The other 2 I believe ended up starting it and dropped it because it didn't make a difference.

We are all of prednisone now.

MalloryMoss profile image
MalloryMoss in reply toWizards

ok thank you, good to hear you're off Pred now!

Altpmr profile image
Altpmr

I take 4.5 mg LDN nightly, and tapered methyl pred extremely slowly. No longer on steroids. I also receive 25g vitamin C and 2 g Magnesium via IV weekly. Sed rate and CRP are nearly undetectable. Took a couple of years to taper, but no longer dependent on steroids. Note that LDN may cause you to have vivid dreams at the beginning.

MalloryMoss profile image
MalloryMoss in reply toAltpmr

thank you for this, very interesting. How long have you been free from Pred? and what did your taper look like i.e. 1mg each month or slower? thank you

tracesoflove profile image
tracesoflove

Yes, I used LDN while tapering and it worked for me--worth the try.

MalloryMoss profile image
MalloryMoss in reply totracesoflove

That's great to hear! how long did it take and what dosage Pred were you when you started taking LDN?

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