Holistic medicine approach to PMR

Hello @pargeo47, Welcome to Connect. My PMR is currently in remission. I've had 2 occurrences of PMR. The first time it was debilitating and I could barely move. I saw a Mayo rheumatologist and was diagnosed with PMR after some blood tests (ESR and CRP) along with a physical exam. The treatment for me was starting on 20 mg prednisone both times. The first time was the most difficult tapering off of the prednisone and took 3 and half years. The second time 6 years later it only took me 1 and half years to taper off and I think I owe most of that to healthier diet - less inflammatory and processed foods and eliminating most of my sugar intake. I do think diet and exercise can help but I'm not sure I would want to rely totally on a holistic medicine approach if it were to come back, but that's just my personal opinion. Hopefully others who may have some experience with a holistic medicine approach to PMR can share their experience with you. There are a few discussions that you might find helpful while you wait for responses.

-- Diet & PMR.: https://connect.mayoclinic.org/discussion/diet-pmr/
-- PMR and herbs, dietary supplements: https://connect.mayoclinic.org/discussion/pmr-and-herbs-dietary-supplements/
-- Curcumin (turmeric) for reducing inflammation: https://connect.mayoclinic.org/discussion/curcumin-turmeric-for-reducing-inflammation/

Do you keep a daily log with your level of pain when you wake up along with your dosage to help with your tapering?

I think both those things play a huge roll. If you are what you eat or lets say eat - think - and breathe. But that might not catch genetic. You could do everything and still have a genetic predisposition. I was born with Asthma . I gave it to my daughter. On the other side who doesnt think what we eat plays an important roll. Obesity in this country is huge problem. I was on the keto diet when I got PMR. It wasnt 100%. I couldnt go into keto. I couldnt survive on the number of carbs. I got PMR 2 weeks after my 2nd covid booster. Coincidence? I also was under a huge amount of stress? I have seen 100's of these posts wondering what caused it. Type A personality? OCD type person? One person was convinced it was exactly 1 week after a heavy workout.? All maybes? Maybe its in the jet trails.? Medically you would be Jonas Salk if you figured it out. But, I agree, I think we can make a difference in how it affects our bodies. Those that dont get it are they doing something different. On one of the facebook sites a guy has started his own facebook page on diet and PMR. He uses the Keto diet with no sugars and limited carbs. I have genetic cholesterol. It raised my cholesterol. But so has everything else. Its an interesting discussion but I dont know how you get to an answer that you can also live by. At least PMR is manageable unlike some of the others. But I am sure we can make it less potent by doing some smart things. Just my opinion.

John...thank you for your reply. Mine started in the right hip that wasn't relieved for more than 6 days with a cortisone shot and gradually spread to the other hip and down to the left knee, then both shoulders and, finally to both shoulders. Having had ruptured L4 and L5 discs and having had shingles, my pain tolerance is pretty high "for a guy", but this was something else. I was afraid to go to bed! My fa2nd "family doc prescribed the 6,5,4,3, etc pack with 2 refills and referred me to a rheumatologist...3 weeks to see him. At the end of the 2nd "pack" the pain was back at peak, so I evened out the 3rd pack...etc..until I saw the rheumatologist. No, I don't presently log my pain level in the morning. And, I'll start woking on low inflamatory foods.

@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.

Thanks for your thorough and thoughtful reply. I have a friend who had GCA, so I was aware of the PMR relationship. The rheumatologist has me on Caltrate Plus, 2 in the a.m. and 1 in the pm, He said Caltrate is the only one that doesn't cause kidney stones. Additionally, he prescribed once a week 35mg of Alendronate Sodium (generic for Fosamax) to address the osteoporosis risk of the long term prednisone. That med must be taken on an empty stomach with water, followed by at least 30 minutes of being erect and no other meds, liquids, or food. I live in a community of up to 150,000 "over 50's" so my assumption is that the doc is quite familiar with PMR. Further, he monitors my magnesium levels, sediment, and CRP. My wife and I, too, eat pretty healthy. My largest daily dosage on prednisone as 24 mg (6 4mg) only twice when I had the "packs" mentioned in my initial post. Other than that, I "maxed" at 17 mg and am down to 12 mg and still experiencing good symptomatic relief.

@pargeo47
Thanks for your response. How great that your doctor is on top of this and has you taking Fosamax early on to avoid getting osteoporosis. I only wish someone had told us! Some doctors leave me scratching my head at times, especially the first rheumatologist we had. She didn't even believe me when I told her I thought he had GCA. He was so sick that I had to insist on the biopsy, hoping and praying I wasn't putting my husband through that for nothing. Turns out it was severe and so disappointing. She never once mentioned the bone issues with taking prednisone. I would have been all over it had I known. Ugh! Now it's too late for Fosamax as a starting drug and we're looking at Forteo. His new endocrinologist is on it now and seems very knowledgeable. Once we get some results back we'll know if he can take it. If yes, he'll be on it for a couple years followed by a couple years on Fosimax.

Thanks for the info on calcium - no one told us about the Caltrate Plus either. Nice to know it won't cause kidney stones. Since he's getting 1200 mg in his diet, do you think he should also be taking the Caltrate Plus? How many mg are you taking in the morning and the evening?

I'm going to be sure that he's being tested for magnesium levels. They are routinely testing sediment and CRP. That is fortunate you haven't needed higher doses of prednisone. He's been on such high doses and unless I had noticed the compression fracture that showed up since last May, we would still not be addressing osteoporosis with his lumbar t-score being -3.4. Which is really bad.

Thanks again for the info.

@pargeo47
One more thing. I went back and checked and they have not tested his magnesium levels. Can I ask why they're checking yours and if you think it's important his be checked? I can ask for it. One thing they're now good about is doing pretty much anything I ask. After what we've been through.

Also, these are the tests they've given him since he developed GCA in Feb 2024 - anything jump out at you?:
2/13/2024 –
comprehensive metabolic panel (no magnesium) – BUN a little high
Vit D level – normal
Phosphate – normal
Serum protein electrophoresis – Alpha 2 a little high (normal .50-.90 – his result .97)
Urinalysis – RBC/HPF said value 4-10 abnormal (no one said anything about this)
ANCA panel – normal

4/6/2024 – thyroid ultrasound – found 2 thyroid nodules, will get biopsy in August (2.0x1.8x2.5cm) (1.1x0.8x1.1 cm)

5/6/2024 – white blood cell differential – cholesterol is up some, per dr, good HDL is up also. Platelets a little low, not worrisome (per doctor) – repeat in 2 weeks
In reading labs, Myeloid Precursors Abs Auto high at 0.19 (normal 0.01-0.07)

6/11/2024 – white blood cell differential – note from doctor labs overall stable.

6/11/2024 – complete blood count – RDW, CV high 16.0 (normal 11-14.5%); RDW, SD 57.7 high (normal 36-50); Platelet count a little low at 134 (normal 140-375.

We’ve had ESR and CRP tests done every two weeks, then tapering down the prednisone as levels remain stable.

Isabelle...I told you incorrectly! It's Citracal Maximum Plus and NOT Caltrate! Citracal Max Plus has 650 mg of Calcium Citrate and it has 1000 IU of vitamin D3 as well. I found it on sale at wither Sam's or Costco and bought 3 bottles since I take 3/day.

Frankly, I don't know why he has me on a magnesium supplement (2 200mg/day, 1 morning, 1 at night) nor why he seems fixated on my "tight" iliotibial muscles (may have something to do with sciatica?).

@pargeo47
Thanks for clarifying!! One question - do you take this in addition to getting calcium in your foods? They told us either 1200 mg through foods or supplement. We do supplement D, 1,000 mg per day.