Alondronic Acid with PMR

[Cler]

Hello everyone, just wanted to ask if anyone is taking alondronic acid and what are your experiences of it? I am bit worried about taking it as pharmacist has called me twice asking me if I have had any side effects then listed what I could get and it has put me off taking it; is it a newish drug? I feel like I am a guinea pig and they are testing it? any comments greatly appreciated

[jinasc]

Have you had a Dexa Scan to see if your bones need protection? If not then ask for the scan and explain to your medics, not until I have a scan to see if I need it.

If you do then check out the Royal National Osteo website as there are other types you can take . If you do end up taking AA make sure you have any dental work done before you start.

I had GCA for 5 years, scan after 6 months, then every 2 years, bones never moved. (&% at first and at the end still 97%.

I call AA, Adcal - PPI's 'just in cases' - if you need them then yes. You will probably need Vit D, but Calcium, ask for a 'full spectrum blood test' to see if your minerals are depleted. If so, then take the stuff required.

[Cler in reply to jinasc]

Thank you jinasc x

[DorsetLady PMRGCAuk volunteer]

Alendronic Acid - not new...I was on it for over 4 years (2012-2016) with no issues whatsoever, but it doesn't suit all.

I would question, do you really need to be on it, have you had a DEXA scan or or are you already suffering from osteopenia or in a susceptible category for osteoporosis?

If you haven't had DEXA scan, ask for one, and if you can answer NO to other two points, you may find that a Calcium/VitaminD supplement is enough to protect your bones -

There are plenty of posts in FAQs on subject - look under Bone health or DEXA scans and even more under related posts.

healthunlocked.com/pmrgcauk...

[Cler in reply to DorsetLady]

Thank you so much for your fast response, this is all pretty new to me, recently diagnosed with pmr, this forum is absolutely fantastic, I have learned so much from you all, I have not had a dexa scan but will be asking for one at my next Drs appointment on 10th Jan so thank you, I would not otherwise have known about such a thing XX

[DorsetLady PMRGCAuk volunteer in reply to Cler]

As you are new, you might like to have a read of this then -healthunlocked.com/pmrgcauk...

..and do browse through the FAQs... they'll tell you more than you ever wanted to know! ..but there's always someone about to answer queries etc..

[SnazzyD]

I refused until I had a DEXA scan and it turned out that although I had some osteopaenia (not osteoporosis) before starting Pred for GCA, AA wasn’t needed. After 4.5 years, 3.5 years of which was on Pred starting at 60mg, I lost 3% bone mass. Some lose none. My reason for resisting it was a long history of gastric reflux (now cured after GCA in remission), a cancer gene that caused another relative with it to get oesophageal cancer, plus some big dental problems waiting in the wings. They still wanted me to have it, poo pooing these this as “rare”. What I would say is that bone health is more than drinking more milk, popping calcium and vit D and taking a hike every day. There is much more you can do. I read Lara Pizzorno’s book about Bone Health. She is very against AA and spends a lot of time talking about its history, but you can skip that bit and still get much from it.

[Cler in reply to SnazzyD]

Thanks Snazzy, your response and experience is really appreciated and I take note of everything everybody has to say about this whole PMR and associated issues

[PMRpro Ambassador]

It is certainly not new - been in use since the late 1990s - but particularly well marketed so doctors who grew up with it think it is the best thing since sliced bread. Not necessarily ...

My view is no dexascan, no AA! I started, took 4 tablets and then discussed it with a different GP who agreed with my assessment so I stopped. The dexascan came back as perfectly OK - slight osteopenia which is normal after about 40, no treatment required. I took calcium and vit D for some years, have not taken calcium for the last 4 years because I had bladder problems, but still take 4000 IU vit D and lots of calcium in my diet. Seems to still work fine. After 12 years on pred, much of it above 10mg/day, my bone density hasn't changed a lot, it is lower but still in the range that doesn't need more than calcium and vit D.

It does need to be monitored - but not everyone loses bone density and it may not be needed. It does have adverse effects after long term use - and I know people who took it for years and then either had problems or their bone density had still gone down and they had fractures. So why use it until you need it?

[Cler in reply to PMRpro]

Thank you for taking time out of your day to respond, I am so appreciative of all the knowledge on here about a condition that I knew nothing about until a couple of months ago and now feel like I have some control as I learn how to manage it Fantastic forum, people are so kind to spend the time sharing information

[Kendrew]

Hi Cler.Immediately after diagnosis I was routinely going to be prescribed AA but refused it until I'd had a DEXA scan. Unfortunately it revealed that I really needed to take it but I was reluctant to do so and very anxious about it.

Almost three years down the line, another DEXA scan showed significant improvement...so much so that the specialist thought it quite remarkable. I asked him if my Calcium rich diet, daily yoga for osteoporosis and regular daily walks would have contributed to the improvement and he was in no doubt whatsoever that it most definitely would have.

I'll be indicating at my next specialist appointment a strong desire to stop taking AA now. (You have to have a break from them after 3-5yrs anyway as the AA itself can cause damage to the bones!) I've been fortunate to not experience any side effects from the AA, but I wish to see if my healthier bones can be maintained in a more natural and gentle way.

I have never agreed to take any of my medication without evidence of actually requiring it! If I had, I'd now be on omeprazole, amitriptyline and pregabalin!...none of which I've needed during the past 3yrs!

If you do indeed need AA then you really don't need to be scared of it, but you do need to respect it (as with any medication).... Always take it with lots of water to wash it right down into the stomach. Don't lie down after taking it and keep your teeth and gums as healthy as possible with regular flossing & brushing and have regular dental inspections if possible...I go every 6mths.

Obviously everyone is different and experiences will differ, but try and think positive and if you can be proactive in working to minimise any potential problems then you have every chance of managing the AA successfully.

[Cler in reply to Kendrew]

Thank you so much Kendrew for your considered response, really appreciate you taking the time to respond

[piglette]

My GPis always going on about me taking Alendronic Acid even though my bone density is pretty good. As the others say get a Dexascan before you even contemplate taking Alendronic Acid. You will find a lot of dentists are very wary of AA. Are you taking calcium with vitamin D? That really is a must with steroids for your bone density. Checking your diet is a good idea too.

[Cler in reply to piglette]

Another important tip here thank you piglette. I am taking extra Vit D but am not taking any Calcium, I need to get on this fast. Thank you so much for your response, really really appreciate it

[piglette in reply to Cler]

You should be prescribed the vitamin D with calcium by your GP.

[DorsetLady PMRGCAuk volunteer in reply to Cler]

Apropos VitD/Calcium supplement, many also take VitaminK2 to aid the absorption of the calcium..and maybe look at this advice as well - healthunlocked.com/pmrgcauk...

[Bcol]

Morning Cler, my thoughts are similar to the others. My doctor mentioned it to me last year and I asked if I could have a DEXA scan first and then we could discuss it. The scan came back absolutely fine and the matter wasn't mentioned again. I don't take extra Calcium but do take Vits D and K2.

[cmToddy]

Cler I have been taking it weekly for nearly two years with no side effects that I know of.

[Olympian]

Hi Cler I have been taking Alendronic Acid for nearly three years no issues then diagnosed with PMR almost one year ago and still no issues on medication for this. I hope this helps and good luck.

[LMali]

Hi, I was diagnosed in July 2020 with PMR and put on Prednisolone (daily 15mg, now down to 5 mg), daily Calcium and Vit D, and weekly AA. I didn't know there were any issues with it so just took it! I have had no side effects. I recently had a bone density scan and have osteopenia. I was already on Omeprazole so this may have mitigated what I understand is one of the side effects of AA - reflux.

[Diyfan]

Hi Cler. I’ve been taking it for 7 years and get no side effects at all as long as I take it with a full glass of water first thing before breakfast and sit up for half an hour. I must confess I forget to take it and probably only take it once every two weeks but I’m fine with it. My nails seem stronger now. Good luck with it.

[Cler]

Thank you all for your responses, couldn't have asked for more support

[DianeMills]

I was taking alondronic acid years ago. When I had PMR I was absolutely fine. I was frightened at first, I took it for about 3 years and am fine. I’m glad I did because when I had a dexa scan my bone density was good.

[Cler in reply to DianeMills]

TY Diane really appreciate your comment

[seamaid]

Hi ,and welcome to the board. I do take AA as I am dairy intolerant which can be a problem ! I have had no side effects at all and am happy with it. it is essential to take it with a full glass of water and stay vertical ( sit stand walkabout, no going back to bed ) for an hour before you eat or drink anything else - I take mine first thing in the morning, wait, then take my preds and breakfast - Sunday morning routine. All best wishes

[DianeMills in reply to seamaid]

That’s exactly how i took mine

[Exflex]

I’ve been on biphosphenates for 2 years, starting with AA but had hand issues and the doctor switched me to Risedronate 35mg.Now I’m on 5mg of Pred I’m thinking maybe I should take the tablet one a fortnight instead of weekly. I’m taking Calichew twice daily. Dexa scan was normal 18 months ago.

[Broseley]

I was told to stand for half an hour, not an hour. I have had no noticeable side effects but it's a pain having to get up extra early and take it before breakfast and all my other meds. It upsets my routine so that I sometimes forget my other meds! Also drinking all that water brings on a bowel movement, which means sitting down, so I have to drink the water first, go to the loo then take the AA - with more water!

[PMRpro Ambassador in reply to Broseley]

The large amount of water is to wash it down - so drinking before isn't too helpful or much point. But you don't need to stand - it is bending over that you mustn't do, Water and tablet, loo stop and a shower or check your forum - half an hour is soon gone.

[Broseley in reply to PMRpro]

Ok that's useful to know. My pack leaflet says to stand. I've always been scared to sit down, even upright. Btw, I know someone else on AA who has had major dental work with no issues. This is another of my worries, so it's good to hear.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

I usually had a shower or sat down and read emails …just don’t lie down or bend over ..although my hubby did call it my “standdy uppy tablet ”!

[Broseley in reply to DorsetLady]

I call it that too! Just checked my leaflet, and it does say you can sit, it was my GP who told me to stand. I prefer not to sit as I tend to slouch. Also how do you wash your legs and feet in the shower without bending over?!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Got long arms😂🤣…..and with GCA legs aren’t affected, so could lift them high enough . Because of late hubby’s issues we had grab rails installed in shower on 2 walls.

[PMRpro Ambassador in reply to Broseley]

Not being personal - but how often do you shower? We really don't get dirty these days - one morning a week without scrubbing your feet won;t hurt!

[Broseley in reply to PMRpro]

I was just playing devil's advocate. I shower once a week!

[PMRpro Ambassador in reply to Broseley]

Then it's easy - change the day for one or the other