Osteoporosis : I had PMR from 2016-2019. Took... - PMRGCAuk

PMRGCAuk

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Osteoporosis

Urtica profile image
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I had PMR from 2016-2019. Took Alendronic Acic for about 6 weeks but stopped because it was affecting my throat. Had bone density scan around 2017 which showed some osteoporosis and some osteopenia (record has been lost due to GP/house move). I was offered an Infusion of AA which I had in 2017/2018. Slowly reduced pred and stopped in September 2019.

In February 2020 I had further 3 year bone scan which looked about the same to me (I had a paper copy of 2017 scan).

In 2023 I started with pain in my arms which I suspected was PMR. Didn’t show on blood test but didn’t show previously. Started pred in May 2023, 10 days 20mg, 7 days 15mg, 2 weeks 10mg and then DSNS reduction and I am now on .5mg.

No Alendronic Acid since infusion in 2017/2018. Just one Adcal-D3 chewable tablet plus K2 Mk-7 vitamin which I read helped absorb the calcium and take it to the correct place.

In November 2023 I had 3 year bone scan which showed deterioration.

AP Spine( L1-L4). T-score 2023 -2.8 2020 -2.6

Total hip (left) 2023 -2.0. 2020 -1.9

I read recently that PMR Pro takes 4000IU Vitamin D3 and calcium. My question is - Adcal-D3 has vitamin D3 400 IU which would make it 4,400 IU D3 per day. Is this amount ok to take? Should I stop taking Adcal and find a another source of Calcium, if so which is best?

I am 75, quite active - walking 3-6 miles per day including hill walking, gardening etc. Balance a bit off so I am thinking of taking a course of Tai Chi to help.

Sorry this is so long.

Any suggestions or information appreciated.

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Urtica
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PMRpro profile image
PMRproAmbassador

Do you have the numbers from the 2020 scan? Whether it is the same as the original or not is less important than the deterioration since then.

I don't take AdCal as it causes bladder problems and I eventually stopped it, getting my calcium from diet. I don't think that 4,400 IU vit is likely to be a problem unless you have sarcoidosis which leads to an exceptionally high vit D level, it also affects calcium I believe. But it is a good idea to check your vit D level before deciding how much to take.

Given your current t-scores, I think you need to discuss what you do with an expert. You haven't improved your bone density by your own efforts really and if it hasn't happened so far, I doubt that will change. ROS has an excellent helpline which quite a few on the forum have consulted.

theros.org.uk/

Urtica profile image
Urtica in reply toPMRpro

Thanks for your quick reply. I can’t find the the 2020 scan but will try to get a copy. I have a GP appointment next week so will ask about getting my vitamin D levels checked and contact ROS for further info.

Thanks again

Oh-my profile image
Oh-my

I emailed the ROS about vit D supplements as I was worried if I was taking too much or too little (I decided to get calcium from my diet rather than the supplements). They replied a few days later with reassurance in my case. It’s worth contacting them for their advice.

From what I can gather the exercise needs to be weight bearing and/or resistance training to maintain (or improve) your bone density. I love walking but my recent DEXA scan has shown it has not been enough for me and I have now invested in a weighted vest for my walks. I’m hoping it will help. I have also started Alendronic acid.

Urtica profile image
Urtica in reply toOh-my

Thanks for your quick reply. I will contact ROS and see what they say. 😁

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