Just diagnosed with PMR. What can I expect?

You are an inspiration to me! I am 2 months into PMR. I am becoming more active with exercise but going slowly. Only lifting 3 pound weights because I have tendinitis in my wrist and still have some shoulder pain which varies in intensity. I have incorporated Tai Chi, Quigong, physical therapy and just entered a wellness program to work on lower body strength to improve balance which has gotten worse with Pred.  I had osteoporosis prior to PMR, improved on Prolio but now Doc will only do Reclast because I'm on Pred. I am surprised your doc gave Prolio. I'm in NJ and NY.

Sandy,

Humm, I saw nothing about Prolia with PMR online to keep me from taking it. I will contact my Rhumy and double check since I'm due for my second Prolia shot in Nov. I have had no side effects as yet. What have you heard about mixing the two? 

Nefret on this forum has been on Prolia for the last 4 years or so and she is on pred for life for PMR and adrenal failure. Her bone density has been classified as normal now and she has had no problems at all. I know of others on it too. 

If a doctor refuses to put pred patients on Prolia it must be a personal prejudice.

I have also checked the manufacturer's website about the trials etc - no mention is made of not using Prolia with pred. But the potential interactions will be the same for all the bisphosphonates.

I had a short phone conversation with my Endocrinologist to report my PMR diagnosis. At that time, she said patients on Pred should take Reclast not Prolio. I will get more info since I need treatment  soon. To be continued.

 

Thanks for doing the research! I will speak to my Dr. and ask for details regarding her recommendation.

By the way, my second taper is going better than the first. Going from 24mg to 23 mg every other day starting this past Wed. created no additional pain. I think adding physical therapy, Tai Chi, Qigong and light exercise added to improvement.  Starting today, I will try to stay on just the lower dose for the next 10 days before next decrease. I am grateful for you and the others on this forum for giving me the courage to experiment with dosage.

Then maybe they need to tell the rest of the world! In the UK at least Prolia is a long way down the list but I can't see why zolendronic acid is better!

I think Prolia is denosumab, which is even harder on the body than bisphosphonates as it actually poisons the osteoclasts.  As these cells are part of the immune system it seems like a rather dire treatment for anyone.  Osteoclasts are part of the "bone remodelling" which happens throughout life as osteoblasts make new bone and osteoclasts take away the old.  Bisphosphonates retard the action of the osteoclasts so theoretically bone density increases.  Unfortunately after a couple of years it means new bone is being built on an aging and increasingly brittle structure, hence the new recommendations that people only take bisphosphonates for two or three years.  And I would add "if at all" but that's just my opinion.

Thanks for your knowledgeable information. I have had osteoporosis for many years and took every medicine imaginable. Two years ago my doctor gave me a rest year with nothing. Last year I had Prolio and had 10% improvement on Dexa Scan. My doc will not give Prolio since I'm on Pred and recommends Reclast. I am 5'2" and weigh 102 pounds. My balance is off since PMR so I take Tai Chi, Quigong, lift 3 pound weights (wrist tendinitis), exercises for lower body strength, Zumba, walk 2-3 miles, eat lots of dairy, Calcim supplements leak from my urine, was on diuretic to help with absorption and developed hyponatremia. 

Any suggestions? Sounds like you know more than my doctor! Thanks.

No, I have no medical training, But I have done a lot of reading and thanks to years working in a library am fairly good at recognizing good research.  My only suggestions beyond what you are already doing - well done with the exercise! - if you aren't already doing so, add a Vitamin K2 supplement to your regimen.  That helps the calcium go into the bones where you want it.  Magnesium is also important for that and sometimes if we are taking calcium supplements which don't include magnesium the two elements can go out of balance in the body and you may need to take a bit of extra magnesium for a while.  You can get that through Epsom salt baths, even a foot bath will work, if you don't want to add another pill.  Because magnesium is readily available in the diet it should be quite easy to sort out any possible deficiency an excess of calcium might have caused.  If you look in on the osteoporosis forum on this website you'll find lots of discussions about whether to take OP medications, diet, etc, although it's certainly not as active a forum as the PMR one!

I did add magnesium (500 mg per day) along with Tumeric tablets, cod liver oil tablets, vit. D. Since I don't take calcium pills do you still recommend K12?

It's K2, not K12.  Yes, this vitamin is essential and is usually lacking in the modern industrial diet.  On the other hand if you consume meat and dairy from completely grass fed animals (not even "finished" with grain) you may be getting enough in your diet.  Unfortunately not many of us have that luxury any more.  It works differently from K1 which is readily available in our leafy greens, and as you want calcium to get into your bones whether from food or supplements it's still going to be useful to you.  The supplement is made from a Japanese fermented soybean called natto, and if you can get that you could eat it instead, although I've heard it's as an acquired taste.   Eating other fermented foods also supplies us with some K2.  Grass fed animals are able to convert K into the K2 form for us, but when fed grain or other foods not natural to them they can't.

I had to stop the cod liver oil as I ended up getting too much Vitamin D so after a while you might consider having a test done to make sure your D level is optimum, neither too low not too high.  

Thanks for the information. I will be adding K2 to my arsenal of supplements! The problem with all this is knowing what works and what doesn't. I will definitely have my Vit D level checked at next appointment 9/25. 

Thanks for all your help.

There's some good information online about Vitamin K2.  Google authority nutrition vitamin K2.

Will do. Thanks so much. You are def an expert!

  I just read a lot!