@pargeo47

I can only speak from our experience - my husband is the one with PMR. He got it May 2023, was on 30 mg prednisone, tapered to 12.5 mg by Feb 2024 when he developed a host of new symptoms. Long story short, he was diagnosed with GCA (giant cell arteritis - something about 25% of PMR patients get.)

My husband says while prednisone has its nasty side-effects, he's thankful for it and feels it literally saved his life. Especially with the GCA which can become life-threatening left untreated (stroke, loss of vision, aneurism, etc.)

I'm into holistic and alternative medicine so my immediate thought with PMR was to treat it as naturally as we could. However, at the same time realizing he needed help immediately due to his pain level. Prednisone offered him that and gave me time to research other things that might help him. I'm still researching.

One thing to know about prednisone that they didn't tell us - if you're on any amount over 7.5 mg (some say 2.5 mg) for 3 months or more you should absolutely get a DEXA bone scan to check for signs of osteoporosis. No one told us this. Now a year into taking prednisone, with doses at 80 mg per day starting in Feb 2024 tapering now to 20 (also taking Actemra injections for GCA) he has bad osteoporosis. Something that was definitely caused by the prednisone. I've also read it's important to start on a medication like Fonanax after 3 months but that's something to be discussed with a doctor. Osteoporosis has been the most complex and difficult part of all of this so I'd say avoid it at all cost. If possible.

As far as what you can do to help yourself naturally. I've cleaned up our already quite healthy diet. We've reduced sugars greatly, make sure he's getting plenty of protein and calcium-rich foods. You should be getting 1200 mg of calcium per day, through foods is best but if you're not getting that much, supplement it. But don't go over 1200 mg per day, it could have a negative affect. Also, have 1/2 of your calcium in the morning, 1/2 of it in the evening. We've managed to work out a plan where he's getting it all through his food through cheese, almond milk (high in calcium), Greek yogurt and greens. He drinks no alcohol and stopped chewing tobacco. Just live the cleanest life you can and it definitely helps.

I read that exercise is important too. My husband's situation is a bit more complex with the added GCA and osteoporosis. He has developed a compression fracture in his spine from the osteoporosis (found in a Feb 2024 xray that wasn't there in a May 2023 xray). Which is why I warn to keep an eye on your bone health.

I'm not sure if any of this helped. I hope it did. Summing it up. I think if a person has a more mild case of PMR with manageable pain that they could try a very clean diet, fresh air, meditation, breathing exercises etc (while working with a naturopath) and see if they can get relief. I don't think it would have worked for my husband, not with the PMR and certainly not for the GCA. Prednisone literally did save his life. He also had to have three 1200 mg infusions in Feb 2024, he was that bad.

I wish you the very best and hope you can get yourself off prednisone sooner rather than later. That's the goal here, and the Actemra is given to help him lower his doses of prednisone more quickly. All these drugs, including Actemra (recently FDA approved for GCA), come with potential side effects. It's all about weighing the benefits vs. the harm they might cause. In our case, the benefits have far outweighed the harm. Though my husband has definitely suffered from nasty side effects. They're getting better as he reduces his dose.

Also. I read that people who do develop steroid-induced osteoporosis have a better chance to reverse it, but they have to take bone building drugs (like Forteo) followed by something like Fosamax.