rheumatology.medicinematter...
Thought you might be interested in this - can we expect a greater drive on biphosphonates? I see they mention HRT as an alternative. There is an incorrect statement in it though - high dose pred shouldn't be used for PMR - although they do acknowledge that it lasts more than 2 years.
Guess I'll wait for the phone call from the Doc then, wonder if she'll get grumpy even though my DEXA was good!!! Perhaps she doesn't read these thing!! Didn't see the bit about high does Pred though. What does count as high dose, anything over 20mg?
" said that although PMR treatment guidelines recommend high-dose glucocorticoids followed by a tapering regimen over 2 years, “evidence shows that in the majority of cases, treatment for PMR goes beyond 2 years,” leading to an increased risk for osteoporosis."
Over 20mg is regarded as high dose but you shouldn't be on over 20mg for long and if you are in PMR it must call the diagnosis into question.
I do note that this treatment includes as first line calcium and Vitamin D supplementation. It is concerning that fewer than half of patients are recommended to take this level of protection. There should be a recommendation for baseline DXA scan, not global recommendation to prescribe medication as routine. Also, have I read it right that most of the people who fractured during first two years of pred treatment had already fractured "at baseline" i.e. before taking pred?
It does say in the PMR management what medication for bones should be considered - with age recommendations. And there is a baseline of calcium plus vit D. Dexa is mentioned - but a primary problem is lack of dexascanners in the UK. Someone got excited once as I had had a previous fracture - in a high speed skiing accident, hardly a fragility fracture!!!!
Fragility wasn't once mentioned when I had the tibial plateau fracture, not until I had the DXA scan after starting pred! As I was 66 when I had the fracture you'd think someone might have mentioned it- although it certainly wasn't a "spontaneous" fracture. And perhaps it's just as well. If medication had been recommended then I might well have taken it, not knowing what I know now.
I wasn't offered any of those, had to request them after help from here
The only bone health advice I've been offered was being urged to take AA after I started pred. I took it on myself at menopause to start taking D and calcium. I took up walking then and was lucky enough to work at a job which required a certain amount of physical activity, including lifting, bending. I asked for the DXA scan. I read up on bone meds and found other ways to preserve and even improve my bone density. I'd say the medical profession in general fails women when it comes to helping us avoid some of the pitfalls of aging, preferring instead to pick up the pieces once we've fallen. And even the fact than most men don't know that when they reach a certain age they too become more vulnerable to bone thinning means that the skeleton itself is ignored until it gives us problems, unlike heart, brain , lungs, etc., which we do get some advice on how to care for.
Speaking of bone health....I have resisted my rheumies efforts to get me on biphosphonates even though my last scan seems to indicate that I now have osteopenia. I asked about taking calcium supplements but upon reviewing my diet the doc felt I was getting enough calcium through diet as I drink 3 glasses of milk a day plus eat yogurt. Today I was listening to a podcast about autoimmune disorders and the specialist shared how a vegan diet could reverse autoimmune disorders and really advocated eliminating dairy from diet.Wondering if anyone has experienced symptom relief through big dietary changes?
Lord only knows where they got that gem from - since dietary trials are next to impossible as they generally are observational studies, you can't force people to eat in a very controlled manner. Except there was one controlled study some years ago that found a strict vegan diet relieved joint pain in half of the RA patients in the trial. Any reintroduction of animal protein resulted in a return of pain. However - it was only successful for half and most of those patients didn't continue past the trial period of a year because they found the diet was too restrictive and complicated /expensive once it was no longer laid on for the subjects. Might be a bit different now vegan alternatives are much easier to obtain.
If it were really the case, there would be no vegan patients with autoimmune disorders - and there have been vegans on this forum. We have vegetarians, vegans, paleo - no-one has shown such extreme diets "cure" PMR at least. What is a benefit is to cut carbs a lot, especially processed ones and added sugar which reduces the likelihood of weight gain and developing steroid-induced diabetes. Most people who eat low carb find that if they stray and eat more simple carbs/sugar than usual then their symptoms are worse.
Nearly forgot - at our age it is very unlikely we haven't achieved at least a degree of osteopenia as that starts with almost normal and has a wide range to the start of what is classed as osteoporosis. It is the t-scores that matter - do you know yours? I have osteopenia, already had it after 2 months of pred and it hasn't really changed significantly despite being on pred for another 11 years! No bisphosphonates, just calcium and vit D
I have done a lot of research on calcium, milk etc. There is a lot of info on how milk may actually work against bone growth. Sorry, I don't have any links as I just wander all over the net and pick up what I can. Just google milk and bones and see what you think.Good Luck
I think the fermented forms of dairy - yoghurt, kefir, some cheeses - are beneficial. But plain old liquid milk can have a detrimental effect because of too much of some element, sorry I can't remember right now which it is. Phosphorus? Recommendation is about one cup of milk a day for adults.
I was put on bisphosphonates ten years ago. Tried them all but they made my bones hurt so stopped them. Decades scan two years later was good. Two years ago slight osteopenia. I now have to take the chemo drug Letrozole for next 5years. This depletes oestrogen from your body, but oncologist has got me a dexa scan for next week before she puts me on bone meds. I told here my experience and how I still have muscle and fatigue problems from gca and pmr. Also Letrozole can cause similar pain.
She was a really greatDoctor who listened and advised me with wisdom and kindness.
Breast cancer nurse huffed and puffed when I said what Doc had said.
I may still have to take them so is there any type which may cause me less problems. Jen
Impossible to say - because bone and joint pain is a very common adverse effect of almost all drugs used in "bone protection" for some people. Not everyone gets it though.
ROS has a helpline who will take you through the options suitable for you - and may well be less judgemental than your BC nurse.
Thank you, I will read info and then maybe ring them when Dexa scan results are back. Jen
Update on pmr and osteoporosis 
Osteoporosis GCA and PMR
Osteoporosis/PMR treatment
Lack of understanding of PMR and prescribing Prednisolone
PMR and Osteoporosis
