Newly diagnosed with pmr and Gp has suggested ale... - PMRGCAuk

PMRGCAuk

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Newly diagnosed with pmr and Gp has suggested alendronate to preserve bone density while taking prednisone. Would prefer diet & excercise.

Ann-1 profile image
16 Replies

Having read all I can on the topic it seems the research points to biphosphonates as being superior to diet (including extra calcium & vit D) & excercise for preventing bone loss in post menopausal women. Would love to know if anyone can show evidence this may not be true as would much prefer to try the natural way.

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Ann-1
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16 Replies
Soraya_PMR profile image
Soraya_PMR

But what is your bone density? Have you had a dexa scan?

PMRpro profile image
PMRproAmbassador

The first question is what your bone density actually IS. For that you need a dexascan. And when you know what your t-scores are you can make an informed decision.

I have been on pred for well over 9 years. I had a dexascan within 2 months of starting on 15mg pred which showed I had very slight osteopenia - essentially normal bone density. I discussed the bisphosphonate question with a different GP who agreed with my result results that there were already considerable questions developing about their indiscriminate use. I had taken 4 tablets, I took no more. After 4 years I had another dexascan, on a different machine so not directly comparable, but to all intents and purposes the same readings. Another 3 years later I had another, in the same unit as the second, and my bone density had gone down very slightly but was still in a range where no treatment should be initiated. I have only ever taken calcium and vit D supplements.

It is however possible to improve bone density even when it is relatively low. Here is a link to a member of this forum's story?

healthunlocked.com/pmrgcauk...

Ann-1 profile image
Ann-1 in reply to PMRpro

Thank you for the informative reply. As I have to wait for 3 months before a bone scan will be done (nhs) I can’t really make an informed choice until then unless my Gp agrees to do it earlier or I go private. As I have no family history of osteoporosis I’m erring on the side of diet & excercise.

PMRpro profile image
PMRproAmbassador in reply to Ann-1

You won't crumble in 3 months! Whatever scare tactics may say ...

bakingD profile image
bakingD

Also with Dexa scan ask to see the Z score which compares your bone density to the normal for your age group, whereas the T scores compares tom a 30 year old !!

PMRpro profile image
PMRproAmbassador in reply to bakingD

It doesn't mean much though - comparing poor with poor is still poor...

jinasc profile image
jinasc

I have sent you a PM as the information is too lengthy for a post.

It is on AA.

Ann-1 profile image
Ann-1 in reply to jinasc

Sound advice, much appreciated

YuliK profile image
YuliK

My rheumatologist advised me to get extra calcium from milk products. I eat plenty of yogurts, low fat cottage cheese etc. also vitamin D supplements

so far so good.

I have no problems with osteoporosis ...

Until now, nearly 12 months on Prednisone ( 25mg started, now 6mg-6:5mg )👍

Sunnyspells profile image
Sunnyspells

Hi Ann, I thought I could manage without the extra calcium and Vit. D. Had my levels checked by my GP who said I wasn't at all deficient in either, my DEXA only showed slight osteopenia, so I ignored the advice. 4 vertebral fractures later I wish I had followed the rheumatologists advice! I now have electronic acid by infusion every year.

Sunnyspells profile image
Sunnyspells in reply to Sunnyspells

Sorry, Zolendronic aid!

PMRpro profile image
PMRproAmbassador in reply to Sunnyspells

Dunno - like the sound of electronic acid!!

It isn't the fact you are not depleted - it is so there is plenty sloshing around.

Sunnyspells profile image
Sunnyspells in reply to PMRpro

Wish they had explained that properly!

sennetta profile image
sennetta

Get hold of a copy of "Your Bones" by Lara Pizzorno. It tells you all you need to know about your gut reaction to alendronic acid and how to go about your preferred route which can be very successful.

ClarkB profile image
ClarkB in reply to sennetta

Well worth reading. I refused Alendronic acid prior to getting the book, which I found an eye opener!

I was prescribed Alendronate in January when I contracted along with Predisone and Evacal calcium and D3 chewable tablets. After a month on the Alendronate I contracted carpal tunnel syndrome and there are several studies showing that Alendronate can cause this. I have stopped taking them and now just take the Evacal and a magnesium supplement and the carpal tunnel is improving.

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