Alendronic Acid

[prunus]

I have had GCA for ten years now and as the result of the last of three relapses agreed to take 3mg of predisolone for the foreseeable future. When I last saw my Consultant she wanted me to go on Alendronic Acid. As things are at the moment I have a good healthy, natural, milky diet. The last DXA scan on 16th May 2019 diagnosed a little osteopenia. I take two Ad cal D3 tablets a day. From what I have read I don't like the sound of the AA. Is it necessary?

[Koalajane]

I would say that you should have another bone density scan before going on it. If it hasn’t worsened then NO

[prunus in reply to Koalajane]

Thanks for that.

[DorsetLady PMRGCAuk volunteer]

Probably not, if DEXA scan only shows osteopenia…it may never progress to osteoporosis-as it hasn’t done so far.

I took AA for 4years with GCA (and in susceptible bracket -hysterectomy aged 37) with no issues whatsoever, but have been off it now for almost 7 years.

Last scan I had (post Pred) the report suggested I stay on Adcal D3 which I have.

Unless/until further scans prove necessary I would stick with Adcal.

[prunus in reply to DorsetLady]

I don't seem to be very successful at managing to stay off predisolone. Thanks for that.

[SnazzyD]

Hello, without another DEXA to say there had been deterioration, I’d say no, especially with a low dose. However, I would say that bone health is a bit more than eating dairy and being active, especially if you are already osteopaenic. For example I’d take vitamin K2 to aid the calcium going to the bones rather than your arteries. Type of exercise is important too along with other micronutrients. I always bang on about the book Your Bones by Lara Pizzorno which gives very detailed advice.

My bone history shows 10% loss from 2005 when I had my ovaries taken out aged 42 to Feb 2017 but I was found to have very low vitamin D. Steroids for GCA for 3.5 years saw a further loss of just over 3% with supplements. After both Scans I was advised to take AA but refused because I thought my personal risk of the worst side effects to be higher than most. Even so, the FRAX table still advised supplements only, though I’m sufficiently near the red line now that if I go on any appreciable dose of steroids again I may have to reconsider, after a scan of course.

[prunus in reply to SnazzyD]

I have not been offered another Dexa scan. Thanks for info about the book.

[SnazzyD in reply to prunus]

Quite often people have to push for it. I guess it’s an extra cost when they can just prescribe AA and be able to tick the gold standard box in your notes, job done. I have noticed blind faith and underestimation of side effects, with AA in many doctors. It is undoubtedly fine for some and absolutely the only thing that stands between severe osteoporosis and not for many. However, once you get down the osteopaenia risk factor ladder the risk/benefit ratio is less compelling.

[prunus in reply to SnazzyD]

An interesting observation, thanks for that.

[Viveka in reply to SnazzyD]

Please continue banging on. I hadn't heard of that book and will now look it up. 👍

[SnazzyD in reply to Viveka]

At the beginning is a long antiAA section and the history of its place in the drugs market but you can skip that bit and go to the health info part, if you don’t want that bit.

[vvvvv88 in reply to SnazzyD]

Why on earth would u skip the first part of a book or advise orhers to do so? (author obviously rates it as worthy of being at front). Ignoring the negatives is kinda like buryin ur head in sand imo!

[piglette]

Personally I would not take Alendronic Acud unless my GP proved I needed it. That would be if my Dexa scan said I had osteoporosis.

[prunus in reply to piglette]

Noone has proved I needed it!

[piglette in reply to prunus]

My GP goes on and on about me taking Alendronic Acid. I don’t even have osteopenia. He says that you should take it if you are on steroids. We argue about it every time I talk to him.

[prunus in reply to piglette]

My Consultant goes on about it every time I see her.She has worn me down so I have got as far as a prescription, but not been motivated to taking any. The question now will be what do I say to her next time?

[piglette in reply to prunus]

If you don’t need it tell her. Say you are happy to have a Dexascan every so often and when it shows osteoporosis you will then consider it. I also say I would prefer to take it when I really need it!

[prunus in reply to piglette]

That is an excellent answer. She never even suggested a scan this time. I have always thought I had reasonable bones and from what PMRpro says about studies it sounds like at 3mg there is very little effect on the bones.

[PMRpro Ambassador in reply to prunus]

Thinking you have excellent bones doesn't always turn out to be true! You need a scan to show it.

[Dewdrop456 in reply to PMRpro]

Dear PMR pro,please may I jump in here with a question that I would like to ask you? I have gone from Osteopenia to Osteoporosis. Now my spine has at score of -2.6 ,change of - 4.2% femoral neck t score -2.8 total hip - 1.8. I am reluctant to start AA from what I've read on this site but do you think I should give in at this stage and take it. I would really like your option as I respect your knowledge and kindness to us all.I have had PMR for over 6 years now and apart from the odd flare am managing on 1 mg of Prednisone daily. ( this latest flare following another Covid attack has been extremely disappointing as I thought my PMR had gone )! Grateful thanks to you.

[DorsetLady PMRGCAuk volunteer in reply to Dewdrop456]

I’m going to hop in here -there are other options to AA -have a look at ROS site -and contact them for advice -

theros.org.uk/#

But osteoporosis can be very debilitating and painful, so do think seriously about taking medication.

[Dewdrop456 in reply to DorsetLady]

Dear DorsetLady,thank you for your kind advice. I will contact them. I am so disappointed that I had another flare .I really thought the PMR had faded away. I hope all is well with you.

[DorsetLady PMRGCAuk volunteer in reply to Dewdrop456]

Sorry about to hear about recent flare -hopefully you’ve got it back under control…blame the covid this time.

Me -good thanks….

[Dewdrop456 in reply to DorsetLady]

Yes I expect it was.I will carry on with the DSNS reduction method when I'm better. I reduce by 1/4 mg each time.

[DorsetLady PMRGCAuk volunteer in reply to Dewdrop456]

sounds good plan…😊

[PMRpro Ambassador in reply to Dewdrop456]

With those scores I would consider something - but AA is by no means the only option when you DO need something. There are other oral forms and also infusions once a year or injection 2x a year. The ROS helpline will talk you through it,

[Dewdrop456 in reply to PMRpro]

Thank you.I will contact them.Thanks for replying. Hope all is well with you.

[vvvvv88 in reply to piglette]

Well i got a dexa scan sayin i have it..but the proof 4 me is 2 hand fractures in last few months doin things i done all my life. I now need proof that this AA is benifical and worth the negatives. I wont b relyin on any doctor in findin the facts and makin my decision!

[piglette in reply to vvvvv88]

Do you have PMR or GCA? This board is for people who have those diseases. The majority take steroids.

[PMRpro Ambassador]

What was the "a little osteopenia" in 2019? I wouldn't take AA at a dose of 3mg unless a dexascan showed I was almost osteoporitic! Studies have shown that down at 3mg there is very little effect.

[prunus in reply to PMRpro]

I'm going to have to go hunting to find you the answer to be more specific. It is very interesting to read that studies have found that there is very little effect at 3mg. In the light of that I do not see me taking AA. Thanks.

[Exflex in reply to PMRpro]

Do you have a link to any of the studies? I’m on 2mg and have become quite lax taking Risedronate. Now only every 2W.

[prunus in reply to PMRpro]

I have been hunting and found the answer you were asking for. 16May 2019. Scan Type - fLeft Hip T score -1.0. fLumbar Spine Tscore +1.2. In the letter there is recommendation to repeat in 3 to 4 years but nothing was said when I saw her. If there are are other results you'd like let me know.

[PMRpro Ambassador in reply to prunus]

I would refuse to take AA or anything else without an up-to-date dexascan. You seem to have OA in your spine but your hip score is absolutely normal. But it is possible things have changed in the 3 years - only a scan will show.

[prunus in reply to PMRpro]

Thanks - will do.

[Grammy80]

I think everybody has pretty much said the same thing I would. I was on AA for a short while when I was diagnosed and I believe I stopped it like 2 years ago. I'm presently on 5 mg and take vitamin D and have had no issues. Take good care!!💞

[prunus in reply to Grammy80]

Trying to - thanks.

[Viveka]

For info, I asked my consultant if I should have annual dexa scans (I pay for them, they are not expensive) and he said this was too often. Once every two years is sufficient cause changes happen slowly. I was on 7mg when I asked and just take adcal and K.

[vvvvv88 in reply to Viveka]

What is adcal (im from uk). I been taking 5000iu vit d and K2 200mcg for a long time (b4 i knew i had bone prob), but always figured i get enuff calcuim in my food. Now been told i have ost...sis and they want me to take AA. Wanna know my options as i only ocassionally take pred but have steriod inhalor for last 15 yrs..mayb i should give that up!

[MrsNails]

There’s a wealth of information on FAQ’s which you will find helpful - l’ll attach the link….

healthunlocked.com/pmrgcauk...

[Kafkaontheshore]

Hi. Just to say ive been on Pred five years now and apart from a short break have been on AA all the time. It’s has done me no harm and I see it as protective. I know others have different views. All the best 😀

[prunus in reply to Kafkaontheshore]

I'm one of those people who is not very good at having enthusiasm for drugs. They all have side effects. My OH was given statins by Harefield and all they did was affect his muscles. The consequence was he could barely walk. The doctor had me see him one day to try to persuade me to go on them. I would not touch them. Having said that whilst there are many like me there are others who happily take low doses.

[Kafkaontheshore in reply to prunus]

yes individual decision. Good luck

[vvvvv88 in reply to prunus]

Yes im very wary of docs tellin me to take sumfing for nxt 5 yrs.I dont doubt i got ost..sis but been takin all rite vits in high doses 4 long time and anit sure AA is way to go