Alendronic Acid and Pred

[diana1998]

My friend who's a long term sufferer of pmr (11 years) was down to 2.5mg but after a mishap had to back to 5mg. She had a review with a new young GP who told her that if she went back on Alendronic Acid, this would help her get off pred. Has anyone else been told this? Wouldn't we all be on it if this was the case? She said he actually didn't seem to know much about pmr.

[123-go]

Your friend is correct in her view that the GP doesn't know much about PMR. Other than that, I'm speechless!

[Deyazlex in reply to 123-go]

my doc had to look it up on Google!!

[ChrisinNam in reply to Deyazlex]

At least he did look it up!

[Seacat30]

👀👀👀 Can she change doctor? He might have other mad ideas too.

[MrsNails]

Errrr! No it has no impact on reducing Pred at all……

[Koalajane]

what a strange idea!

[DorsetLady PMRGCAuk volunteer]

No he obviously doesn’t-that’s a new one on me ! 😳

[Kendrew]

Alendronic Acid is a type of medicine called a biphosphonate and is prescribed to help build and maintain bone density, thus strengthening and minimising the damage that may be caused by the long term use of steroids.

However, it will have absolutely no effect whatsoever with regard to helping you taper off prednisolone. There are indeed other medications that are in specific circumstances, prescribed for this purpose, but AA is most definitely not one of them.

I personally would like to ask this young GP if they can show me some evidence to support this claim. I certainly wouldn't be happy for them to prescribe such a toxic medication for myself, based on that particular reason.

AA does not come without the risk of it's own unpleasant side effects and in my opinion should not be prescribed unless absolutely necessary and therefore with appropriate evidence to support this...eg. a DEXA scan to measure bone density/health.

[TheMoaningViolet]

I remember reading of a study that suggested just that, but I suspect that this is one of those results that don't necessarily have a causal relationship. Also, most of the bone loss is likely to happen during the early stages and your friend is on a low dose now. It may be prudent to do a DEXA to check the state of her bones, but at this stage it would only make sense to take the medication if osteoporosis is diagnosed.

[diana1998 in reply to TheMoaningViolet]

Absolutely. She has osteoporosis now but this new Dr never should be telling patients they will be able to get off pred if they take it.

[PMRpro Ambassador in reply to diana1998]

He certainly shouldn't - and should be reported if he really is saying that.

[TheMoaningViolet in reply to diana1998]

Agreed.

[PMRpro Ambassador]

What utter and complete drivel - what on earth gave him that idea? 10 out of 10 to your friend - he doesn't know much.

I can only wonder if he slept through his pharmacology/rheumatology lectures but woke up at some point where methotrexate in PMR was being discussed - and confused it with bisphosphonates or alendronate (another name for AA). Normally drug name endings show what group of drugs they belong to. Just a thought, methotrexate/alendronate???????????

[Suffererc in reply to PMRpro]

if he gets muddled with medicines, what chance have we got!!!!🥹🤓

[PMRpro Ambassador in reply to Suffererc]

We KNOW we don't know, and look it up!

[piglette]

It is not so much knowing about PMR, her GP does not know much about pharmaceutical drugs either. Common sense should have made him realise that statement is total rubbish.

[Sl0th]

my GP said I need to take alendronic acid for as long as I am on prednisolone. Never had a bone scan. I am not happy with it but hard to go against medical advice which I have questioned. I am due to see rheumatologist tomorrow (1st appointment, referred January and been cancelled twice). It is my top question for him. Experience with Rheumatology seems very varied on these pages so not raiding my hopes.

[123-go in reply to Sl0th]

Your GP/rheumatologist should provide evidence for prescribing alendronic acid, i.e. by requesting a dexa scan and scrutinising the results and then discussing with you the need for it (or not) and the risks/benefits. After that conversation you would be able to make an informed decision whether or not to take it - there and then or after you had carefully considered the facts. Remember that it is your right to refuse any medication offered.

Good luck with your appointment tomorrow.

[Sl0th in reply to 123-go]

quick update. Rheumatologist immediately said it isn't PMR (too young, and having stiffness in fingers, toes and knees, was his reason). He didn't offer a different diagnosis but at least has stopped my Alendronic Acid and arranged a bone scan which is in a couple of weeks time. I have to continue reducing pred, which I was anyway. He basically wants to start again with me, which is irritating when the hospital cancelled my appointment twice and I should have seen the Rheumatologist in May. It's like piggy in the middle if consultant and GP are not in agreement but I will try to keep my head.

[PMRpro Ambassador in reply to Sl0th]

Well a world name in the field doesn't argue what I have is PMR - and it started at 51 with foot and hand pain and knee problems. One rheumy said it was OA, she could "feel it". 13 years later there was no sign of OA on an x-ray (fancy that, novel idea to use imaging to identify something that shows up with it!)

You say you are "not yet 50" - but how far from it? It doesn't make you too young - it is just less likely the younger you are - and Prof Sarah Mackie, UK PMR expert in Leeds, says she has several patients in their 40s. No-one tells PMR it has to wait for your 50th birthday ...

[123-go in reply to Sl0th]

Thank you for the update. This is very unsettling for you.

May I suggest that you write a post of your own so that more people are able to read about your issues; that way you will get more relevant responses. At the moment you are getting 'lost' in the original poster's thread. It often happens 🙂. A little more about your initial symptoms and tapering programme (how long between each drop) will be useful and whether or not you have ever been pain free. Did you have a number of blood tests to rule out other conditions before being prescribed Prednisolone?

PMR usually presents with bilateral pain and stiffness-commonly in the upper arm/shoulder area at the beginning but by no means exclusively. This was my own experience and later, before diagnosis, I certainly had painful and swollen fingers and knees.

It is entirely possible that you don't have PMR but your rheumatologist doesn't seem to be basing his opinion on any firm evidence - and 50 is not too young to have PMR!

.

[DorsetLady PMRGCAuk volunteer in reply to Sl0th]

All those things, not a good reason for it not to be PMR - agree with PMRpro on rest

[Bcol in reply to Sl0th]

Had the same conversation with my doctor and when I asked for a DEXA scan she was more than happy to arrange and then make the decision when the results came back. Results were excellent so she was very happy for me not to have AA or similar and for it to be reviewed after another scan in two years time.

[DorsetLady PMRGCAuk volunteer]

From guidelines -

-6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis

. Individuals with high fracture risk, e.g. aged over 65 years or prior fragility fracture

􏰀 Bisphosphonate with calcium and vitamin D supplementation

􏰀 DEXA not required

. Other individuals

􏰀 Calcium and vitamin D supplementation when starting steroid therapy.

􏰀 DEXA scan recommended

􏰀 A bone-sparing agent may be indicated if T-score

is 􏰁1.5 or lower.

. Individuals requiring higher initial steroid dose

􏰀 Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative dose of steroids is likely)

Depending on your circumstances, and how agreeable Rheumy is -might be worth asking for scan.

Some seem to pick & choose what they following from guidelines!