osteoporosis threat
Posted , 6 users are following.
Thanks to this great forum which has sustained me in many a dark hour.
I have had PMR and been on preds since January 2011. Now down to 5/4mg a day and reducing slowly. My bone scan showed I have some osteopaenia though my GP thinks it's OK for my age (66). He offered me bisphosphate medication. After he explained it and I read a bit about it I have strong doubts about putting this in my system. I am quite an active woman or as much as I can be. Any views on this?
0 likes, 14 replies
pat38625 Miu
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EileenH Miu
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I had a bone scan 3 months into pred and then again three and a half years later, for most of that time my dose was over 10mg. The scan was essentially unchanged with low level of osteopenia just like you probably. No medication was insisted on either time. Had either shown anything nearing osteoporosis I would have considered the bisphosphonate but as it is I've got through well over 5 years so far on just calcium and vit D. I suppose I need another scan soon.
Some one on one of the forums wrote recently she had contacted the National Osteoporosis Society and spoke to a specialist nurse who explained the scan results to her and the implications.
My main concern with regard to these drugs is firstly the "polypharmacy", all the different drugs we are shoved onto when PMR is diagnosed. Polypharmacy increases the risks of side effects and no-one knows how all the drugs interact anyway (it isn't the same as 1 to 1) and definitely not in the longterm. And bisphosphonates should not be used for more than 5years - so I'd rather save them in case I need them much later in life. I'm far from convinced by the "prevention" concept since I know a few people who've taken them for years and they did nothing. Have you had your calcium and vit D levels checked first of all? Because they don't work if they aren't adequate.
pauline36422 Miu
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calcios and bisphate. does it do the same thing i have never seen a rhumi
either. so i am supposing i am not as bad as some people
EileenH pauline36422
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The bisphosphonates are subastances that slow down the rate at which bone is broken down while allowing the formation of new bone so the density shouldn't reduce and may even increase.
This explains it all:
https://patient.info/health/bisphosphonates
pauline36422 EileenH
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EileenH pauline36422
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I've had PMR myself for over 10 years. I've been closely involved with the support groups and a research group as an expert patient for some years - and have answered hundreds of questions in that time as well as writing articles for newletters about various aspects of PMR and its treatment. I suppose you could say it's my hobby!
pauline36422 EileenH
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EileenH pauline36422
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Have you ever had a vit D test done? Having a low vit D level can cause symptoms very like PMR and it should really be checked when they are making the PMR diagnosis.
pauline36422 EileenH
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EileenH pauline36422
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pauline36422 EileenH
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rita38591 Miu
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pat38625 rita38591
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EileenH rita38591
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In the UK risendronate sodium is used as second line for patients who can't tolerate alendronic acid since it costs slightly more. It is very unlikely that Atelvia is used in the UK as it costs probably 10 times as much as the generic substance!