I was worried about this unsolicited review by my surgery as was expecting a hassle about the steroid dose and a push to reduce faster, a recent flare made me anxious. There was no need to be concerned as a different Dr to my named GP called. It appears that they were concerned that I was taking all the protective meds including biphosphonate for bones. On advising them of my reluctance re the latter they informed me that they also have/had PMR, diagnosed at an unusually young age and also had a similar plan re having a Dexa scan prior to making the decision re bone protector. Unfortunately, it showed good bone density, 2 years later osteopina, now osteoporosis. They were concerned that I didn't make the same mistake.
This confirms for me the advice given by the professor (of bones!) at our AGM. I know that others may feel differently for good reasons but just wanted to share this. I have seen on the forum comments related to Dexa scans being a rather crude and not necessarily robust measure of bone density? Did the professor talk about this at the AGM?
How lucky am I to have someone in my practice who understands this condition but sad that such a young person (49 when diagnosed) has had this outcome. I wanted to ask them so much more but the occasion did not seem appropriate.
One question was the amount of calcium to take, atm I take 500mgs as have a lot of milk and yoghurt in my diet. I think there is a warning not to overdose?
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Fatsiajaponica
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I will try to when the next review is due. He is happy to arrange the blood tests I asked for to see how I am doing with the low carb diet etc...also when I want them.
What do you think about the Calcium question? Would appreciate your input
I have had good dexa results - but they also found a possible spinal compression fracture. I'd say if you have plenty of dietary calcium, then 500mg is fine. Dietary is always preferable.
At the risk of telling you something you may already know, it isn't only calcium and Vitamin D you need for healthy bones. Along with appropriate weighbearing exercise (as simple as regular walk, totally what you can manage, not to over do things) you need several micronutrients. Vitamin K2 is very lacking in the modern Western diet so a supplement is advised. Also magnesium. These two nutrients in particular are important to make sure the calcium not needed for regular life processes makes its way into the bones, rather than floating around and eventually settling into organs or onto the walls of blood vessels. It's not so much "too much calcium" as too little of what makes the calcium do its job properly!
Very helpful, thank you. I take K2 but was using magnesium to help with cramps when on 60mgs, stopped that now but trying to achieve from diet. Struggling with the exercise, motivation mostly. Have purchased resistance bands, weights and walking poles...still in the box. I've been breathless since covid which has put me off walking far, went into town for necessary shopping and needed to sit down twice, totally alien for me. I had had my flu jab that morning though.
I did some research recently, and I take 1200 mg of calcium and 15 micrograms of vitamin D. I dring a cup at last of milk also. I am overwight, and do as much walking as I can. I do not take bone protection medication as my DEXA scan was "fine," with slight osteopenia in selected joints even after 4 years on pred. My doctor would like me to start now that I have gone over 10 mg for a longer period, but he is not pushing it. He said that most bone loss is seen in the first 3 months after starting pred. I simply do not want to add another medication that ruins my stomach (I take MTX) and has side effects that resemble PMR symptoms.
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Well worth a Dexa Scan to see if Bisphosphontes are essential!
Do I agree to take AA?
Update on Life, tooth infection, antibiotics and tapering.
Bone Scintigraphy Scan
