Osteoporosis/alendronic acid

[Clarbeston]

I have had a reasonably uneventful PMR journey so far 🤞. Diagnosed April 2020 slow pred reduction from 15mg now reducing 5.5mg/5m. I also take lansoprazole15mg/ vitamin D 800iu as prescribed by my GP since first diagnosis ( she said my diet was high enough in calcium) and following advice on this invaluable forum vitamin K2/ magnesium. I've been taking a multi vitamin and mineral tablet as well to top up B12/ iron (I don't eat meat).

In July 2021 I had a Dexa scan and have been chasing the results ever since although I was not too concerned as I don't drink/ smoke and get plenty of exercise. (And yes, I do count my blessings all you fellow PMR sufferers with co-morbidities).

Long story short, today the Dexa results finally arrived and I have osteoporosis!

T- scores -2 .5 at the spine and hip

FRAX assessment concludes 10 yr risk is 27/of major osteoporotic fracture and 11/ for hip fracture.

I have never had a broken bone still got all my own teeth.

I was so taken aback by the news I didn't think to request another scan to see if things had deteriorated in the 15 months since the first one.

GP advises alendronic acid. Do I need this?

[jinasc]

Go to the Royal Posteoporisis Society and read up on all the different medications, there are alternatives to AA. You can choose once you have all the information.

[Clarbeston in reply to jinasc]

Thank you for the speedy response.

[PMRpro Ambassador]

Here is the link for the ROS website which lists the Helpline number

theros.org.uk/

And I would be making a noise about what happened to that result. It is totally unacceptable that it too 15 months to get information to you that had a clinical implication.

At this stage you probably do need a bisphosphonate though as you have done the other stuff. I disagree with your GP's assessment you had enough calcium in your diet - pred has an effect on calcium absorption and excretion and it is a good idea to have extra floating around in the system, though maybe not as much as usually given with 2 calcium tablets a day. You should have been told to take more vit D though - 800 IU may be what is in the supplement tablets, it isn't really enough though.

However, AA isn't the only option. Do you have any gastric problems or problems with swallowing which are contraindications for the AA tablets?

[Clarbeston in reply to PMRpro]

Thanks for your thoughts as always.I have no gastric issues.

As well as the 800iu of Vitamin D prescribed, my multi vitamin tablet contains 10ug whatever that means.

I can't see much point in following up the delay in getting the Dexa results . I have phoned the hospital department responsible a couple of times only to be told that they are working with an 18 month time lag so I guess my 15 month wait is better than most!🙄

[Clarbeston in reply to PMRpro]

My calcium supplement has 200mg.

[Smithie49 in reply to PMRpro]

Hi PMRpro.Having had a shock after my DEXA scan results showed me to be incthe osteopenia range for my hips and osteoporosis lumber spine, I've been reading all sorts of things. I came across a mention that it's possible to eat too much calcium and it turns out I do - massively - consuming a couple if 500ml pots fat free natural yoghurt daily!! I mailed the ROS as per your link and had a super, very detailed mail in return plus a call from an osteoporosis nurse. Overdoing the Ca can lead to milk alkali syndrome or hypercalcaemia. There is also a Rolaids-yoghurt syndrome and I also take Tums or the USA Equate Ca carbonate indigestion tablets to try to cure my terrible bad breath. So, along with my blood test tomorrow for Vit D she suggested I get my blood Ca level done. Oh dear. Should have listened to my Mum - moderation in all things.

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

You should always listen to your mum! ..thought that was a given 🤔

[Smithie49 in reply to DorsetLady]

Wish my children knew that 😪 😔 !!!

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

..well you haven’t trained them properly then have you! 🤣😂

[Smithie49 in reply to DorsetLady]

😵😕

[PMRpro Ambassador in reply to Smithie49]

I like yoghurt - but I truly can't imagine downing a litre of the stuff every day!! And a lot of calcium in Tums - which are actually the same as the calcium supplements.

And do ask your GP about the halitosis - various reasons for that.

[Smithie49 in reply to PMRpro]

Will do - and thanks

[Exflex]

There’s downsides with a lot of medicine as we all know. Here: AA prescribed after starting Pred 15mg for PMR, developed finger/writs pain about a month later. GP switched me to Risedronate and the pain in hands disappeared. No idea how the confection differs, but there is something.

[PMRpro Ambassador in reply to Exflex]

Just different substances - similar with prednisone, prednisolone and methyl prednisolone. All corticosteroids, slightly different metabolism, different side effects for some people.

[Clarbeston in reply to Exflex]

Thank you for sharing your experience.. I'll keep it in mind.

[Nannie-C]

I had osteoporosis found in hips but spine normal, I then had a REMS scan (ultrasound) which confirmed my suspicions that dxa was wrong (research sadly shows at least 50% contain at least one error). What the REMS did show was that hips normal and spine barely osteopenia but it did show that my fragility/strength results were not so good due to steroid use. I do not n take any op drugs. Sadly dxa scans are rarely able to measure strength only bone density as need additional soft wear to do this and currently uncommon.

I’ve also found that my parathyroid glands are faulty which causes at least 8- 10% of all bone loss.

I’m getting it dealt with and currently seeing surgeon.

Just reneneber it’s not always steroids that can damage bones.

[Clarbeston in reply to Nannie-C]

Really interesting comments.. I will take this up with my GP . Thank you