Connect
Low Dose Naltrexone and Prednisone for PMR?
My doctor has prescribed LDN and I will be receiving it soon from a compounding pharmacy. I am tapering prednisone, now at 12.5 (from 20 over 4 months) with no pain, although I can feel that PMR is still active. From what I have read, I plan to take 1.25mg of LDN at night, and 10 mg prednisone in the morning, slowly working the LDN up to 4.5 and the prednisone down as reasonably quickly as I can without a flare. Has anyone tried a similar formula? Any advice would be welcome, and of course I will report developments.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I tried it for 4 mo. 2 years ago. It did not help me. I hope you find something that works for you.
-
Like -
Helpful -
Hug
4 ReactionsHi there- I am a caregiver for my father who has PMR. He’s been taking LDN 4.75mg (it’s an unusual dose, I know) for over a year. I also take it, but I have a different inflammatory arthritis.
In both our cases, it does more for fatigue. It’s hard to tell the effect on inflammation, though my current rheumatologist does prescribe it to her patients who are interested.
In my father’s case, he still gets flares with tapering—I feel the flares are more a result of the speed of the taper, than influenced by things that could be done to prevent it. But for what it’s worth, his flares have been less severe—whether it’s due to the LDN or our adaptations to adjust the taper, it’s hard to know. We do feel it improves fatigue for us though.
I think it’s worth a try if you’re willing and also can stomach the price. Side effects and risks are very low (and I’m very leery of side effects and struggle to tolerate many medications). We use CareFirst Specialty Pharmacy in New Jersey, and they have the best rates we’ve come across.
-
Like -
Helpful -
Hug
4 ReactionsHello! My rheumatologist has recommended it. I am down to 3.5 mg of prednisone, tapering by 1/2 mg monthly. We tried reducing by 1 mg and I kept flaring. I have also gone gluten-free, which has helped and have added 1tbsp flaxseed oil daily. Trying all the things! lol. Thanks to everyone sharing their experiences. It’s truly helpful to know others who are experiencing PMR.
-
Like -
Helpful -
Hug
3 ReactionsI am considering trying ldn if I can get someone to prescribe it and no prednisone.
Did you ever do that route? If so, how is ldn working for you? I am very med sensitive and def looking at micro dosing.
Hope you are doing well...I know this is an old post.
I have been on 15 mg. of Prednisone for a few months. I take 7.5 AM & 7.5 at dinnertime. Unlike most PMR patients my pain is more severe at night. Due to other health issues I had to start on very low doses of Prednisone & work my way up. My pain is better, but not gone, I do suffer flares and currently am. Having labs drawn tomorrow.
I started taking LDN a couple of months ago. At first I couldn't find a doc to prescribe, just outside of NYC, but switched to one in the city & she had no issues. I started with 1 mg. for 1 month, then 2 mg. for a month, just started 3 mg. I can't say if it's working or not, but willing to try anything. My doc sends the script to a pharmacy in Brooklyn that mails it to me.
Both my father (the one with PMR) and I use LDN in conjunction with other medication for our inflammatory/autoimmune arthritis. It’s meant as an adjunct to prednisone in his case (and mine, though I have a different condition), not a replacement for it.
I actually requested it for him not for the PMR (because the evidence about how anti-inflammatory it may or may not be seemed a little fuzzy to me, and it’s not a risk we could take) but because he was having extreme fatigue even as the PMR improved.
I had come across LDN with my care team because I have central sensitivity syndrome and POTS, which both cause chronic pain, fatigue and brain fog. I also have an inflammatory arthritis. For me, the LDN has been more effective for fatigue, not pain. Because my dad started taking it to target fatigue also, and not as a replacement for prednisone, we can’t really say if it’s helping his pain.
It can be a bit challenging to find a physician to prescribe it, although my new rheumatologist does. But I don’t think it’s likely to find a rheumatologist who would prescribe it instead of prednisone or other approved medications for PMR. My PCP regularly prescribes it because she works with a lot of chronic pain patients like me, and my dad’s neurologist prescribes his because he has a more integrative approach and was aware of it.
Oops I forgot to say that my father and I are also very sensitive to medications. We both started at a very low dose (.25 mg) and increased by that amount every two weeks until we got to our eventual doses. He stopped at 4.75 mg and I take 6 mg.