Low Dose Naltrexone and Prednisone for PMR?

My doctor suggested jumping from 10 to 7.5mg of prednisone. That didn't work and I had a flare. I don't think LDN has enough anti-inflammatory action to replace prednisone until, perhaps, 5mg of prednisone. Meanwhile, the LDN is doing lots of good.

I also am tapering down.
From 20 ml prednisone with LDN
Am sitting/staying at 12.5 (back up from 10) for a month or two or 3.
Thankyou for sharing that in England they allow/recommend splitting the dose so that upon waking there is less pain.
Right now I'm taking 10 ml Pred+LDN after breakfast.
Then 2.5 bf bed.

I was diagnosed with PMR in early February 2023. I was struggling with it probably only 3-4 months bf hand.
I consider myself fortunate that my young PCP nailed it. My last SED rate level went from 77 to 34 ...still high but going in right direction. ✅️
CRP almost in normal range.
I do want to find out it I have GCA without getting that biopsy....is there another way?

When my PMR was active, my primary care doc was always asking me about my symptoms and watching for GCA. I think you only have to worry about GCA if you start having any of the symptoms.

"What are the warning signs of temporal arteritis?
The main symptoms are:
-- frequent, severe headaches.
-- pain and tenderness over the temples.
-- jaw pain while eating or talking.
-- vision problems, such as double vision or loss of vision in 1 or both eyes."
--- Temporal arteritis - NHS: https://www.nhs.uk/conditions/temporal-arteritis/

I'm just thinking about all the headaches I had when trigeminal neuralgia was diagnosed. My headaches were "electrical headaches." They were sporadic until they progressed and happened all the time.

Eating, talking, brushing my teeth, a mild breeze on my face were enough to cause a jolt of electrical pain but it was nerve pain. People with trigeminal neuralgia are known to get teeth pulled and root canals because of jaw pain that they think is a tooth ache.

When uveitis was causing eye inflammation along with visual disturbances with the potential for going blind --- I don't know why GCA wasn't ever diagnosed. Fortunately, my ophthalmologist could tell it wasn't GCA by looking inside my eye and he could see my optic nerve. He would tell me often that he didn't see any signs of GCA.

Now I have glaucoma related to prednisone use. My optic nerve is showing some changes from ocular hypertension. My visual fields are okay but not the best so I do cosopt eye drops for that problem. My ophthalmologist wants to keep me off prednisone if at all possible.

I'm glad to hear the LDN is helping, even if it's not enough to completely replace the prednisone. I'm just seeing this now; otherwise I would have chimed in... Maybe this will help someone else: My dad has PMR (and is recovering from a severe stroke). I actually have chronic pain and learned about LDN from my own physician, mainly for fatigue, but we hoped to see if it would have a positive effect on some of my other symptoms (GI, central sensitivity). It's helped with the fatigue, but I haven't really noticed other benefits. Anyway, because it's so low risk, I talked to my dad's doctors about prescribing LDN and fought the usual battle of questioning its safety, what is it, how do they order it from a compounding pharmacy, etc. Thankfully, someone was willing to prescribe it, and we started noticing a difference in his energy when we got to 3 mg. His stable dose is 4.75 (as high as we could get without it being too activating). I'd like to think as he continues to taper prednisone it'll continue to help him. Fingers x'd.

Good luck.
I had ringing in my ears too plus a tipsy feeling and thinning of the skin.

Has anyone been prescribed low dose naltrexone?

Yes, I asked the CRNA at our pain clinic for it last summer, his first patient to use it. On 4.5 mg now for the next few months. I can't tell is it's helping as I flare regularly trying to taper.

Hello @cgm. I combined your discussion with an existing discussion titled "Low Does Naltrexone and Prednisone" - https://connect.mayoclinic.org/discussion/ldn-and-prednisone.

I did this so you can meet the many members who have been prescribed low dose naltrexone, like @sandmason, @emo, and @janielou56 have shared their LDN experiences.

@cgm, if you are comfortable sharing, has this treatment regimen been prescribed for you? Have you tried other treatments in the past?

I’ve been taking it for three month but not noticed any difference. I was so hopeful…..