Alendronic Acid. Making my own choices.

[Doraflora]

Just an offload really:

I woke up today (AA day) and decided not to take it.

I’ve just been reading previous posts on here and ive found it pretty scary to read that once stopping taking it, it can stay in your system for 10 yrs. That’s frightening stuff.

I was diagnosed over the phone withPMR in March 2020 by my then GP who just sent me a link to read about it! She immediately put me on Pred, AA, Adcal & Omeprazole.

Since being at the new surgery 3 years now, I’ve not once had a conversation with any doctor about my meds, so I just do my own thing.

After my imminent holiday to Rhodes I’m going to ask for an appointment to talk about all my meds - hopefully F2F for the first time.

Without taking the AA I’ll just up my calcium intake and do more bone building exercises.

If something can stay in your system for 10 years, it’s an eye opener to really think about the implications it could have on long-term health.

[Fatsiajaponica]

Hi Doraflora, I have also chosen not to take AA until I have a dexa scan to assess where my bones are. I take calcium ,vit D with K2 and have stayed on HRT throughout which I hope has helped my bone mass. Have you had a dexa scan yet? Perhaps when you finally get to see your GP you could ask for a referral to help you make a fully informed decision. Good luck with it all,I see you are down to 3mgs which is amazing.

[Doraflora in reply to Fatsiajaponica]

Yes, I’ve had two dexa scans in my 4.5 years, the last one earlier this year. I can’t remember the score, I need to phone the surgery & ask. I do have osteopenia but eat lots of oily fish etc & do exercise regularly to look after my bones.

I’ve now actually got down to 2.5 mg and so far so good.

[PMRpro Ambassador]

At 3mg it probably is no longer required. Used properly the bisphosphinates have their benefits. Without them there is an increased risk of fractures due to reduced bone density - spinal compression fractures or due to a fall can be extremely painful and both they and hip fractures can be life-changing and even life-ending. You do have to balance the risks if the pred leads to reduced bone density.

[Doraflora in reply to PMRpro]

I know, but I’m hoping that as I eat lots of the right foods and exercise then that will hopefully help.

I’m actually down to 2.5 mg now and the thought of the AA staying in the system for years is a bit overwhelming.

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

I was on AA for 4 years, stopped when I got to around same dose as you [with GP's agreement].

Been off it now since 2016... had three joint replacements - in 2018, 2019 & 2020 - so guess it was still in my body for those - no issues whatsoever with surgeries - or since.

Think you may be getting in state unnecessarily... so maybe contact the ROS and discuss with one of their nurses - sure they can give better advice -

theros.org.uk/information-a...

[Doraflora in reply to DorsetLady]

Thanks, DL. You’re probably spot on about worrying unnecessarily.

I worry about everything - but then again I don’t want to be taking any meds I don’t have to any more.

It wouldn’t be so bad if we had a surgery where you felt supported. . Our surgery is an all-singing/dancing centre, where you’re just a “patient”. The same with most medical centres these days I guess.

I’ll definitely contact the ROS thanks.

[PMRpro Ambassador in reply to Doraflora]

I don't worry about much and certainly not about medical stuff. I work on the assumption I got to this age, compare myself with my family at this age over the years and think I have done not too badly - and it's all a bonus from here on!

[Doraflora in reply to PMRpro]

Love your mindset Pro. You are so right. Live for the now!

My hubby says I worry too much🤣

I blame it on my dear old dad, who was way, way worse than me. But he was not far off 101 when he passed away so he did exceptionally well.

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Nobody wants to take meds they don't need... and to be honest no point worrying about what's happened in past -can't do owt about it!

easier said than done I know..

[Doraflora in reply to DorsetLady]

Oh, wise one

[Rubha in reply to Doraflora]

Like PMR Pro, I take a bisohosphonate. I have had 2 dexascans and have established osteoporosis. Like all drugs they have their side effects (just look at Prednisolone) . Re exercise , I was a long distance runner ….plenty of impact exercise there. It’s a balance and if you need it…..you need it. Better than compression fractures. But you are now on a low dose as the others say and not good that your practice has not done a review of your medication. Good luck with your tapering.😄

[Gimme]

Lucy you, if you managed to get DEXA results. 5 months later and still waiting for my results.

[Doraflora in reply to Gimme]

Have you chased it up?

[Gimme in reply to Doraflora]

Repeatedly! In fact, I am considering going to have it done again privately. Just so that I can get some results. I'm a bit peed off about it, tbh. The radiologist did tell me that my bones look really good, but couldn't give me the numbers. I need a baseline so that I can know if it is getting worse from the pred, as I really don't feel very confident that I will ever manage to get off pred and AA is a last resort, as far as I am concerned.

[PMRpro Ambassador in reply to Gimme]

Twice I was shown the computer screen and analysis - basically the pretty print outs that should come with the report. So knew the results unofficially. At my last dexa I could have accessed the online report the same day - didn't since it was all in Italian and wouldn't have helped me much!!!

[Doraflora in reply to Gimme]

Guess you’ve tried speaking to the relevant department directly?

What a sad situation that you have to consider having another one done privately - especially for such a routine thing.

Can’t see the NHS improving with this latest government shower….

[Gimme in reply to Doraflora]

Unfortunately, the NHS has already been privatised and this is one of the major problems with outsourcing all your services. I've seen all this in consulting when I was working. These companies are paid a lot of money to deliver a service and they just aren't delivering. They simply aren't accountable to anyone. It's what happens when you don't have strong project management of third party service providers.

It's not just the difficulty of getting my scan results, I also had a sleep study done months ago and I have never been able to get the results of that either, so I have no idea if I have sleep apnea, or not, which could have consequences for the health of my heart. The problem as a patient is that you have no leverage whatsoever, because you are not the customer. The contract lies between the NHS and the third party contractor and what there is left of the actual NHS is so stretched that there aren't enough people to keep on top of it.

[Paulx222 in reply to Gimme]

How much is a private dexa scan if you don't mind me asking?

[PMRpro Ambassador in reply to Paulx222]

Depends where you get it done. It can be anything from £100 at Southampton

uhs.nhs.uk/departments/rheu...

£115 in some London clinics and

£125 at the uni of South Wales

southwales.ac.uk/services/c...

to over £250 at some other private providers.

[Paulx222 in reply to PMRpro]

Oh.

Thanks ❤️

I might go for that

[Doraflora in reply to PMRpro]

That doesn’t sound as expensive as I thought it would be…

[PMRpro Ambassador in reply to Doraflora]

Really does depend where you go. In some cases an overnight somewhere is cheaper than locally. You have to shop around!

[Oh-my in reply to Gimme]

Do you have the NHS app? Results were posted on mine within a week. It was way much longer wait before my GP contacted me about it. I think I had to initiate it in the end. I had already been prescribed preventative AA which I was holding off taking until a discussion of the results.

[Gimme in reply to Oh-my]

yep, done that, got the T shirt lol And still no results.

[Lottieandlola in reply to Gimme]

I was 8 months waiting for my results and I chased constantly and checked weekly on my NHS app. When I eventually got the results I had developed osteoporosis but I wonder if my scores are even worst now due to the lengthy delay. Still waiting to see a rheumatologist .

[PMRpro Ambassador in reply to Lottieandlola]

It doesn't change very quickly, that is why you are never likely to get annual scans.

[Lottieandlola in reply to PMRpro]

That's reassuring to know 😊

[Viv54]

Hi Doraflora , i agree with you , my GP wanted me to take it due to spinal/ hip problems even before ihad a Dexa scan ! Anyway i read up on it and it was not for me, my scan results were normal! I just added to my vitamins and am happy with that.I have enough meds to take without anymore !

[Zappata in reply to Viv54]

Did your spinal/hip problems resolve themselves?

[Viv54 in reply to Zappata]

Sadly no to the spine, as for the hips, had one done waiting for my other hip to be done.My spine was already really bad and so we're my hips.This is to do with Arthritis as you can imagine having PMR on top of this can be more than challenging. I sometimes don't know what part of my body the pains in.I have days when I can get really down then think there are a lot of people worse off than me.Hope this makes sense not wanting to take AA.

[Doraflora in reply to Viv54]

My argument now is that I’m currently on a low dose (2.5mg) and I eat plenty of calcium as well as looking after my bone health (well I was doing until I recently acquired Covid. Thankfully tested negative today - yay)

[Viv54 in reply to Doraflora]

Great, we had it about a month ago!Good luck with your decision, my consultant did say I may never get lower than 3, like you I look after my bone health where ever possible, I have calcium/magnesium so I'm just plodding on .Will see what happens .😊

[Pollyone]

hi there. Just taken my first AA today after putting off due to dental treatment. I’m 8 months on Pred currently 8.5mg from 30 mg. However had results of a Dexa scan the other day and am still reeling from it as thought I was fit after 30 years of regular exercise but am in danger of fracture -47% so have no option but to take.

I rang the Royal Osteoporosis Society for advice and they have a really good website. There was a webinair I listened to yesterday and at the end a Professor explains how AA works and in fact keeps working if stopped after 10 years. Not sure how l will get on with AA and would rather not take it but after being told not to lift my young grand children up but get down to their level due to the state of my bones - wondering if I will be able to get up from doing that with the PMR. And I thought I was a young 70 year old.! Professor David Armstrong was the rheumatologist at the end of the webinair. Not up to doing links I’m afraid. but it was part of Bonematters events in May 2022 on ROS website. would definitely say have a DEXA scan if you can.

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

I have have already linked the ROS site in my reply -and agree they are very good.

Hope all goes well with AA

[Smellydog9]

Another way of thinking about it could be that because AA stays in your system for so long it continues to protect your bones.

[Exflex]

I was informed by a Maxilofacial Dr that Bisphosphonates have a half life of 10years, meaning after 10 years the effect has only reduced by 50%.

[Oh-my in reply to Exflex]

But as most of your adult skeleton is replaced every 10 years I’m guessing it’ll be sooner rather than later.

[Exflex in reply to Oh-my]

I was working on that premise too, but I only listened but not question the Max Fax guy who at the time had a scalpel at my neck (BBC removal).

[Holidaytime89]

Same thing for me - I just woke up and decided not to take it. (The AA)

I’d taken 2 months in total - but have just had my DEXA results which showed no change (from osteopenia previously) I’m now on 5mg pred. I take calcium supplements and eat healthily and am also continuing with HRT.

The potential side effects of AA worry me, but if the DEXA had been worse, I would have carried on taking it.

But it seems crazy to me that they prescribe omeprazole so readily when long term use can cause bone deterioration? I’ve always had problems with Restless Legs and found that magnesium citrate relieves it - but it’s got much worse recently and I think it’s due to the omeprazole- which I’ve now been taking for 8 months to protect my stomach whilst taking pred. I’m having blood tests next week - GP has agreed I can reduce the omeprazole from 20mg to 10mg but not to stop taking it. I’d like to stop it altogether (I know some other folk here manage without it)

I didn’t tell him about stopping the AA 😳

[Doraflora in reply to Holidaytime89]

I’ve had PMR 4.5 years and not once has a medic done a review of my meds. After my imminent holiday I’m going to rattle a cage…..(tactfully of course 😉)

[sidra1968]

I also chose not to take mine.

[Poshcards]

AA made me ill, so I stopped taking it about 8 years ago, even though my dexa scan wasn't good and today without it I am still fine!

[Doraflora in reply to Poshcards]

That says it all! Good for you