Update on LDN: A while back I posted that I would... - PMRGCAuk

PMRGCAuk

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Update on LDN

papadapadoo profile image
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A while back I posted that I would be trying low-dose naltrexone and would report the results. Here is an update after one month of LDN.

I began taking 1.1mg of LDN in addition to my regular dose of prednisone. I had just tapered slowly to 12 1/2mg, taking 5mg at 2 AM. After a week I noticed no effect of the LDN and began taking 2.2mg of it. After another week, still no perceived effect, so went to 4.5mg, which was one tablet of LDN. After trying various time and dose combinations, I decided to try to taper the prednisone to 10mg. I took the prednisone, one 10mg tablet, at noon, and 4.5mg LDN at 11:30PM. For the first two days I woke with a feeling of mild euphoria, but still could feel the PMR in my left bicep and shoulder. On the next day there was almost no pain or stiffness, and for the last two days I have felt like there was no PMR at all. I plan to keep to this regimen for another week and then try to continue the prednisone taper, slowly. It is early days and who knows if this success will hold. My hope is that the LDN will help me taper more easily than I could without it. My second hope is that I can eventually stay on a maintenance dose of LDN instead of prednisone. Whereas prednisone does the job on PMR, it suppresses the immune system and comes with negative side effects. LDN, on the other hand, works by bolstering the immune system and should have some power to bypass or mitigate disease. I have done a great deal of reading about LDN and recommend the several books and many pages of web material. So far, LDN looks promising, but we have a mystery disease and the future is unclear.

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winfong profile image
winfong

Good to know. Here's a medical article on it:

ncbi.nlm.nih.gov/pmc/articl...

papadapadoo profile image
papadapadoo in reply to winfong

That's the article that I gave to my doctor. On the basis of that information--that it would not harm me, and might help, I think--he wrote me the script that I sent to CareFirst in NJ.

Sunnyday365 profile image
Sunnyday365

Thank you for the update. Please let us know. Glad it seems to be working for you.

Chiqui1950 profile image
Chiqui1950

I am also on prednisone at 5 mg now-- after 3 1/2 years and several mishaps. I continue to taper 1/2 ml per month approximately with no symptoms and I take nothing else. When I was at 12mg, my doctor urged me to taper about 1 mg per month depending on symptoms. If you can tolerate going down to 10 mg. even better --- after that I went one mg. down per month. When I got to 5, tapering 1/2 mg per month seems to be working for me.

I am happy for you that you are having success tapering your prednisone dosis with the help of LDN. Tapering predinsone is important because of the side effects especially in your bones--- I wish you all the best as you continue to recover and health one day at a time.

Pondhopper profile image
Pondhopper

I am glad to hear it was helping. Any updates?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pondhopper

Maybe have a look at poster's profile -

healthunlocked.com/user/pap...

papadapadoo profile image
papadapadoo in reply to Pondhopper

LDN hasn't done much for my PMR, at least as far as I can tell. But it is a mood elevator and since I began taking it, my annoying neuropathy is totally gone. So I love it.

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