Some advise please

[Choosepink]

Just been prescribed Alondronic acid what do you people think about this drug do you think it's a good idea I have got a Brocken arm so consultant advised me to take them . Not sure

[Koalajane]

Hi, I don’t take it as it gave me heartburn. My doctor prescribed it and then rang to say not to take it until going to the dentist. I did some research and didn’t take it again. My bone density is now normal. Have you had a bone density scan. I also take calcium and vitamin d3.

[DorsetLady PMRGCAuk volunteer]

You really need to check if you need it- with a DEXA scan if you don't already know that you have osteoporosis, or are susceptible to getting it. I was, and took it no problem, but it's not a drug to take if not required. Most people find a Calcium/VitaminD supplement sufficient to protect bones.

A broken arm doesn't necessarily mean to you have osteoporosis!

[SnazzyD]

How was your arm broken?

[PMRpro Ambassador]

How did you break your arm? Is it a typical low bone density fracture - no particular force but still a break?

Have you had a dexascan? Do you have low bone density? My mantra is no dexascan, no AA! In the meantime, get any potential invasive dental work done as dentists are very wary of treating patients on such drugs.

I took 4 tablets, hated it and discussed it with a different GP. He agreed with my reservations and we agreed I would wait for my dexascan result which was good so I took no more. I have been on pred for 11+ years and my bone density has barely changed in that time, it is still at a level that doesn't require anything more than a good calcium/vit supplement. Had I taken it without question I would have been taking it for no good reason for a long time which isn't recommended - max 3 to 5 years without taking a drug holiday.

Have a read of HeronNS's story:

healthunlocked.com/pmrgcauk...

[DogAgilityObsessed]

I’ve been taking AA for 6 weeks without obvious side effects. But I didn’t start until a dexa scan showed I needed it.

[Kendrew]

I've been on AA for 18mths following a DEXA scan that showed I had osteoporosis. So far it doesn't appear to have caused me any serious side effects that I'm yet aware of, but it's not a medication I would be on unless I absolutely had to be. I'll be having another DEXA scan later in the year and a reassessment of the situation.

[Bcol]

My doc has talked about it with me but has agreed to me having a DEXA scan first. Not got a scan date yet though, guess, given the present situation it could be a while.

[Janstr]

I had osteoporosis for many years pre PMR/ GCA & resisted taking AA, instead increasing my dietary intake of calcium, walking 40 to 50 km a week & doing vibration training which was developed for astronauts who lost bone density in space. I also took another drug which much fewer side effects than AA. For many years my bone density slowly increased until a test a couple of months after the onset of pmR symptoms ( but not diagnosis) showed a huge drop. I decided to I take AA after pMR/GCA diagnosis a few months later. My bone density has increased considerably as a result if this. I did break a bone in my foot over a year ago which has only 50% bonded ( possibly due to the pred). I am wearing special elephant feet like shoes & will be re x-rayed in Feb, when if there is no further bonding, I may have to have pins put in to hold the break. With this there is a risk of the bone shattering. I don’t appear to have any side effects from the AA.

If you do have osteoporosis i recommend taking the AA. You don’t want to end up like me, or like my mother who had considerable pain from osteoporosis.

[Daffodilia]

I take it as prescribed

[Abbey17]

I was prescribed it but my dexi scan quite good - I researched it and was concerned about the side effects particularly dental so have never taken it and won’t. Eating for my bones and exercising as much as possible when fit enough to keep bones strong - also take calcium tablets.

[Golf123]

If you contact the National Osteoporosis Society they will explain why it's important to take AA if you have this condition. Diet alone will not reverse any bone loss as researched and backed by scientific research. I was wary to take AA but with a lumbar DEXA score of -4 decided to take. 6 weeks as so far ok. You must take with plenty of water and try to stand for 30 minutes to prevent any reflux.

[PMRpro Ambassador in reply to Golf123]

Not entirely true:

healthunlocked.com/pmrgcauk...

HeronNS improved her t-score from -2.1 to -1.6 just by diet, supplements and exercise. A t-score of -4 wouldn't improve - but to be honest, I'm not sure it will improve with AA either, it usually makes on minimal improvements and is mainly to prevent deterioration.

Standing is not essential - sitting upright is enough.

[Suet3942]

Personally I wouldn’t take it if given the option again. I was prescribed it 8 years ago when I was diagnosed with pmr. It made me feel sick but took it for 2 years. If you ever need a tooth removed it has to be done at a hospital so I am hoping that I don’t get a problem during lockdown as that wouldn’t be happening. Apparently it stays in the system indefinitely.

[artisam]

I was prescribed them before Christmas - they're still in the box! I really want a DEXA scan first as I'm not convinced I need them. Probably not much chance of that at the mo. Good luck with your decision - not easy is it?

[MaritimeMags]

After I broke my arm badly in July, and completely flattening my nose, my Doctor prescribed AA. and AdCal, despite my saying that I took vitamins regularly every day. I read the AA packet and took one dose as I thought the Doctors know best. I found all the warnings by the manufacturers quite scary. I then decided not to take any more doses as I was on painkillers because of the broken arm, and have a very sensitive stomach. Meanwhile, entirely at my request, one of the Doctors at my surgery has sent me for a DEXA scan. I still await the verdict and really hope AA will not be necessary.