PMR: Hydroxychloroquine or low dose naltrexone

Hello @ekolodziej.

I'd like to invite @pkalkstein @suetex to share their experiences with low dose naltrexone. You can read all of @pkalkstein's experiences in the Low Dose Naltrexone and Prednisone for PMR discussion: https://connect.mayoclinic.org/discussion/ldn-and-prednisone.

@cherrill53, @wilckdds, @joeblo746, and @jfannarbor may be able to share their experiences with hydroxychloroquine (Plaquenil) for PMR.

@ekolodziej, have you been prescribed either one of these treatments in addition to your prednisone, or are you exploring options because of your concern with long term use of prednisone and methotrexate?

Thx. Have not yet been prescribed either yet. On third month of methotrexate. I see my rheumatologist at John's Hopkins in 6 weeks. So I wanted to prepare for a discussion of alternatives. The hydroxychloroquine and naltrexone were suggested by a retired MD friend. Doing my homework. Your suggested links are greatly appreciated.

I was having two kinds of pain, one when I was using my muscles and one when I was just lying there. LDN removed the nonmoving pain in less than 2 days without side effects. And kept it away. I take plaquenil for Sjogrens sicca also and has lessened the dry mouth. But it takes its time. Was on it at least 2 months before I noticed a difference. I say give LDN a try. I'm only on 2 mg.

Thanks. For me, at this time, the non-movenent pain is more of a stiffness and discomfort. Right now, the non-movement pain is the most annoying. Also, the continual fatigue while on the methotrexate really wears me down physically and emotionally. Appreciated your post. Thanks

I’ve been on hydroxychloroquine and sulfacalzine for about a year now, also 25 mg of methotrexate injection weekly . They have allowed me to reduce the prednisone to 2 mg and I hope in a month to be completely off it. This said however , the swelling and stiffness have not gone away and continue to plague me…I start Actemra next month in hopes of reliving these symptoms …

Thanks, Ed

Hi,
I'm on Plaquenil 200-400 since April and now Low Dose Naltrexone, a week tapered up for 2 months into the 4.5mg daily dose. I will not take methotrexate and can't see a rheumatologist here anyway. They do not want PMR Medicare patients and send us to Internists. (Not officially diagnosed!!!)
Symptoms started with a hamstring sprain in Dec 2022, and suddenly progressed into severe bilateral, hip and shoulder pain in February. Textbook, 70 yo female, N European, even family history of PMR.
I started 5mg pred, hubby is an internist so we always have it on hand, and I couldn't get a "real" doctor appointment on short notice before a long, solitary, trip. By the time I got home, I had figured out it was PMR and had to up the dose to 20mg to function at all.
Labs were normal by the time I got them, a week into 20mg and symptoms gone. So my new PCP was nervous about my self diagnosis and wanted me to taper too fast which I refused to do. So I also self started Plaquenil in April, also on hand at home, with hubby's blessing.
I'm only down to 12mg after 7 months with one flare after another, labs rising, so I am not pushing the taper. The LDN was recommended by many in the PMR Facebook group. I do not want to bring on GCA!
In our small rural area we found a pain clinic CRNA who was eager to start using LDN. We found a compounding pharmacy and now my husband is also starting on it for a nerve pain syndrome.
I have no side effects from either Plaquenil or LDN. I do seem to have realistic dreams that confuse me, like dreaming that I took out the trash when I didn't. No nightmares. Of course, I can't really tell that either drug is working. LDN is innocuous and I intend to stay on it at least 6 months, expecting that it will help me taper faster. I stopped pickleball for now but otherwise I've been very productive and active.
Good luck!

Hi, I am 53 and on 200 Hydroxycloroquine aka Plaquenil in the am and pm for PMR. 5 mg prednisone. Tapering from 5 m brings a flare. I'm in no major pain unless I try to lower the doses of either. My Rheumatologist said that I can stay on these doses without any issues. It's been 3 years. I guess time will tell. Hope that helps and I'd love any thoughts.