bisphosphonates and dizziness

[blue8green]

I started taking alendronate (70mg once a week) about 10 weeks ago. I was very dubious about it but did lots of research and ultimately decided to give it a go having read accounts from people who are housebound/ in constant pain due to their osteoporosis. Initially I seemed to be tolerating it well. Then I started to feel increasingly dizzy and unsteady.

Has anyone else had a similar experience? Did you persevere and it improved or did you stop and the symptoms disappeared?

I know some will say consult your GP and I will, but I'm considering stopping it temporarily to see whether the dizziness subsides...

[Met00]

I've read of someone else having similar symptoms recently. I would definitely stop the AA and see if the symptoms vanish, then go and discuss with your doctor, whatever the outcome.

[Fruitandnutcase]

I took AA for four months and felt very unwell all the time - right from my very first tablet - I slept all of the day I took my weekly pill then next day my bones all hurt, among the masses of side effects I had felt very dizzy and wobbly. I was 70 but I felt like I was a really elderly geriatric and could only walk if I clung on to my husband. I felt really depressed and awful because I had always been a really active person. I felt like an invalid, a shadow of my former self. The only thing I didn’t have was digestive issues.

In the end one day when I picked up my prescription I told the pharmacy assistant to take the alendronic acid back because I no longer wanted to take it. She was shocked. I then wrote to my GP telling her I’d stopped and asking her to remove AA from my repeat prescriptions. I heard nothing from her but eventually I had to confess to the osteoporosis nurse and then to a doctor I saw at the rheumatology dept for my arthritis and then to my lead consultant who called me at home at 8.30 one night - all of whom were shocked and worried and wanted me to start infusions but as I had felt so awful - I honestly felt like I wanted to die - not suicidal but it all happened at the start of covid and I didn’t care if I caught covid, I told my husband I didn’t want life support etc. There was no way I wanted an infusion with a whole year’s worth of bisphosphonate put in at once.

The first doctor at rheumatology at least said she couldn’t guarantee that I wouldn’t feel just as bad with infusions although it didn’t stop her trying to persuade me to have one. My physiotherapist, my Pilates teacher, friends who take alendronic acid - are all shocked that I have given up. I just don’t talk about it now.

I felt like my old self within a very short time, but it was such a difficult decision to stop then I decided that as I was so utterly miserable while taking alendronic acid that I was just going to have to take my chances without the meds. I eat well, take vitamins and minerals that help build bone, I keep on the move and weight bearing exercise. It’s not an easy decision to make though,

I should say that I know a lot of people who are happy to take bisphosphonates and you rarely hear from them on this site.

I suppose it depends on your T scores, your age and what has caused your osteoporosis and the risk you are prepared to take.

[Snowybear in reply to Fruitandnutcase]

I’ve avoided AA etc to date and am nearing the end of 2 years on Teriparatide, eat very healthily, tho’ GP has now called me back in to discuss recent cholesterol result?? Wondering what kind of weight bearing exercise you do . I do an hour’s walking each day, otherwise light gardening and house stuff .

[Fruitandnutcase in reply to Snowybear]

I’ve got hand weights and I use Thera bands too. I have a weighted vest but I mostly use a back pack when I’m out to add a bit of weight. Like you I walk for at least an hour every day and I use Nordic poles. I find I now pace myself for housework and gardening.

[Snowybear in reply to Fruitandnutcase]

I guess I should do more weights. I see the ROS are going to be doing some exercise films soon. Never tried doing weights - hate anything that’s gym related! Thanks for replying - I need a bit more discipline. I do pick my Yorkshire Terrier up a lot - she’s about 6 kilos!

[Fruitandnutcase in reply to Snowybear]

Love the thought of weightlifting with your Yorkshire terrier - bet she wouldn’t be too impressed.

You don’t need to go to the gym, you can buy some hand weights - they go from 0.5kg upwards, you can use tin cans from your larder or bottles of water and you can buy a set of therabands fairly reasonably.

[Raleigh59]

do you want to ask a pharmacist ?

[MWZ3]

First of all, no pain from osteoporosis. More likely is that it is osteoarthritis.

Many people feel unwell, dizzy, sick on those drugs.

My sister had to get off all of them, felt unwell the whole time.

[CloudyD]

Hi. I'm in my 6th week of bisphosphonates and noticed that my limbs are very heavy, stiff, a bit painful and yet also seem wobbly - not the symptoms I was looking out for or was worried about because of other medical conditions. But otherwise fine so far. I've decided to try to exercise my way through it for the moment and have seen a slight improvement. However anything that goes on too long should be reviewed properly and your dizziness is a serious side-effect as you need to avoid falls. So maybe you do stop them while you await a GP review. I read somewhere that they stay in your system a little while, so you're unlikely to lose protection overnight.

I was wondering about your dose though - I'm on half your dose. I suspect the dosage depends on many different factors combined, but maybe you can see about reducing it and see if that eliminates or reduces the side-effects?

[Fruitandnutcase in reply to CloudyD]

My dose was a 70mg tablet once a week, same as the original poster. I thought that was a pretty standard dose for alendronic but I could easily be wrong.

[CloudyD in reply to Fruitandnutcase]

Ah, my bad. I'm on Actonel which is risedronate - a bisphosphonate but has a different dosage. Just looking it up and alendronic seems to have better BMD results for same tolerability. To be discussed with the rheumatologist I'm seeing in a couple of months.

[Mazzamarsh]

Hi, I’ve been taking AA 70mg tablet once a week for the past 2 years, initially I was so worried starting it as had read so many negative views, however I have to tell u that I’ve had absolutely no side effects whatsoever, & although I don’t know if my bone density has improved until I have my next scan in a year or so, I feel fit & healthy 👍😊x

[Fruitandnutcase in reply to Mazzamarsh]

from what I can see s8me people get on very well with it with no side effects and other people like me have problems. I certainly didn’t ever expect to have the side effects I had - I wondered about gut problems but the rest came as a surprise. Hopefully your next scan will show good results.

[BrancepethCastle]

I've never had dizziness, but the so-called rare side effects were dreadful. Alendronate works by getting your osteoblasts to work more than your osteoclasts. The trouble is, this can end upmaking your femurs brittle.I don't know how long I'd been taking it, at a vuessonger than 5 years, when in June 2014, I walked down a slight slope, and my left femur snapped. At the hospital, they told me it was the alendronate, so I stopped taking it, obviously! In March 2020 I stood up to getoff the bus and my right femur snapped. The hospital daid it was the alendronate, nearly 6 years later it was still in my body. It is the cheapest pill for osteoporosis. There has been a class astion in USA, called Fosamax there. It is NOT a rare side effect, whatever they say. I got home the day lockdownstarted, and am now frightened to leave the house.

They now say only take it for 2 or 3 years.

[WellThatHurt]

I took AA for a couple of months before going onto the new Romosozumab injections and I didn't have any adverse affects at all in that time. The trouble is that your dizziness could be caused by all sorts of things. Even if you stop taking the AA and it goes away it could still have been a viral infection that has also cleared up over that same time period. Ultimately only you know your body and have to make your own informed decisions.

[Majorboxe]

I took AA for six weeks following months of deliberation. I experienced some severe dizziness and bizarre feelings so stopped taking them and only continued with my vitamins. I then paid for a REMS scan where I was told that for my age, 72, my bones were what was to be expected . I have now reestablished my exercise classes. The extremely worrying times I experienced following Dexa scans have now disappeared . Just hoping that with exercise and vitamins I continue to feel ok!