After a Dexa scan report my rheumatologist said she thought I should start on Alendronic acid as I was just borderline for osteoporosis. My mother has it and her spine is crumbling so I thought it sounded like a good idea. Was I bit worried when I got the medication but went ahead and started. I had a few little aches and pains but then after 3 weeks things got a lot worse, my ribs in particular became so painful - haven't had rib pain before. I called advice line and the message from consultant was to stop alendronic and see if things eased. I think maybe they are, but still not settled completely. Has anyone else had issue with this? Are there alternatives? Now I have googled alendronic I am worried about taking it but also worried about osteoporosis - help !!
Alendronic Acid: After a Dexa scan report my... - NRAS
Alendronic Acid
Hi Gillian,
Sorry to hear you have been diagnosed with osteoporosis. You should have a look at the Healthunlocked site Bone Health - loads of information on there. Also look at the Royal Osteoporosis Society theros.org.uk they offer masses of information about diet, exercise drugs etc and have nurses you can call and speak to.
You need to find out your DEXAresults. You also need to see what other tests they have done as there are several things that can cause osteoporosis - have they tested for coeliac disease? Early menopause is another possible, taking steroids, an overactive thyroid is another possible as is hyperparathyroidism - nothing to do with your thyroid gland, the parathyroid glands sit in behind the thyroid. So there are lots of possible causes that need to be checked out - if you have hyperparathyroidism for example you need that fixed before you start taking meds.
I started on alendronic acid - I took it for four months and felt so terribly ill I wrote to my GP and asked her to take it off my repeat prescription.
I slept all of the day after I had taken it and then all my bones hurt, I had so many unpleasant symptoms (funnily enough no problems with my gut which tends to be the most common thing with bisphosphonates and which was the only thing I was worried about) that I just couldn’t carry on with it and I’ve been prepared to take the risk of not taking AA.
When my decision eventually came to the notice of my rheumatologist I had already come under pressure to have an annual infusion from a young rheumy I spoke to but she actually said she was unable to guarantee that I would feel any better with an infusion which was very good of her - a whole year’s medicine in my system at once. No thanks!
I know it is probably a foolish decision - my Pilates teacher and my physiotherapist are both shocked that I stopped and I know they are only concerned for me but as an aunt took bisphosphonates religiously for years and carried on crumbling I’m prepared to take my chance without them.I would say to be very careful if anyone offers you Prolia as stopping that can cause rebound fractures and you absolutely must take a relay drug which is normally a bisphosphonate such as alendronic acidSo join Bone Health and do your research and good luck.
Hopefully you are only osteopenic and have time to work on helping your bones.
If you don’t fancy having an infusion, do search around to find a tablet you can take. Believe me - getting a fracture anywhere, but particularly in your back is almost worse than RA..I have friends who couldn’t cope with AA, & they are fine on other Biophosphonates.
I know what you’re saying and there must be thousands of happy bisphosphonate takers and I have friends who look at me as if I am completely mad but I found the alendronic messed with my head and I felt incredibly depressed. I could barely walk and my vision was affected too - had to cling on to my husband and felt like a really frail old lady. No way could I walk to get the weight bearing exercise I needed. I lost the will to keep going and didn’t care if I caught covid or not - in fact I saw I felt so awful that I saw covid as a way out and told my other half that if I caught covid I did not want to be resuscitated.
For me the effect of the alendronic was worse than the pain from my broken wrist, the CRPS I got when the plaster came off which was awful and a sacral fracture I got when I fell and landed on my tailbone a year later. The breaks were all really painful and inconvenient but my head felt clear and apart from the pain of the breaks I felt normal and bright, for the four months I took alendronic I felt like a completely different person
Someone posted this ‘NICE decision aid’ about taking bisphosphonates and I decided I’d try without - saying that though so far I haven’t to my knowledge had any spinal fractures.
nice.org.uk/guidance/ta464/...
I’m sorry to hear the med gave you such problems and it made you feel depressed too. Can that be a common side effect? You know what you felt and that’s the crux of it ... your side effects were intolerable. 😑 x
Thanks, you’re right, you know how you feel and what you can tolerate.
Bisphosphonates causing depression isn’t something that is commonly mentioned - I googled and found a few examples so it must be happening to some people.
nature.com/articles/s41598-....
What was interesting though was that the young female rheumy I had the consultation with who said she couldn’t guarantee I wouldn’t feel just as bad with an infusion muttered something about ‘well you can take hydroxychloroquine’ as if to say if I could tolerate hydroxy then why couldn’t I take alendronic acid.
I tried statins many years ago too - I started them as I went on holiday in the south of France and had terrible muscle pains and weakness and also felt depressed as if I wanted to curl up in a corner and shut out the world - when I came home from holiday I researched and found that depression can be a side effect of statins although it isn’t widely mentioned.
Yet I took carbimazole for Graves’ disease for the year I was treated with no side effects and it is considered to be a horrible drug. I suppose there are just things that agree with your body and things that don’t.
Carbimazole has been fine for me too. Hope you have been/are being successfully treated/are euthyroid. Have to say I don’t know much at all re statins and RA, or Hydroxy as my rheumy said no to that as it can alter your vision (and I’m an artist. ) The young rheumy nurse might have been better explaining more to you re her comment re Hydroxy and the alendronic acid. Totally agree the side effects of some meds can be as bad as the condition itself as you so rightly said re the osteo med and its horrible effects. 🤨
PS. Read your link thank you. Makes sense as my ex neighbour was on aa and got really bad depression and she was such an upbeat and lively lady. Also I believe my SIL is on aa and has dreadful anxiety manifesting itself quite horribly in her OCD becoming so much worse these days, directing all her issues at my husband and I. She never listens to anyone (just talks AT them!) so no point in gently saying she might benefit from counselling.
According to that NICE decision…starting AA after 75 means I could live another 13,5 years …..with or without fractures…..so I’ve got 10.5 yrs left! But as I’ve lost 2inches in height…..in 3 years….will I lose another approx 7 ish inches ? 🤔
Hmm - I wonder. I suppose when or if all your vertebrae *go* you will eventually stop losing height. Surely you eventually have to stop losing height.
I have seen some very tiny ladies around. It’s amazing how you look at other people and spot the signs when you aware aware of osteoporosis.
I have a motion activated security camera in my hall,& sometimes I turn it on …..then forget it….then check myself walking when I’m not thinking about it. …it really makes me watch my posture.It’s great fun because it pings on my iPad when it’s activated! So far no Dowager’s Hump!
Thanks for the link I will contact the osteoporosis society and see what advice they can offer. My mother's spine has crumbled so I am hoping I might find something to help 🤞
dr Sarah Myhill site very informative she has a shop I bought her bone mix. You take dose by your weight
She's ex gp now functional doc. Always worth a look shes ex
Yes there are other Biophosphonates you can take that do the same job as Alendronic Acid..I’m afraid I don’t know what they are as I take AA with no problems…luckily steroids don’t agree with me so only took them for a short while 20 years ago…so do try to stay off them if possible as long term they affect bones.
There are infusions & tablets you can have… …so do persevere until you find something…I was lucky in that my Dexa scans were all satisfactory…..then in my late 70’s they dropped..but not before I’d had a fall and fractured two vertebrae in my back..& they give me more pain than my RA.
Hope you find something that suits you quickly.
My mum had Oestoporosis and yes I too was worried about it as it’s a dreadful disease. But I had a DEXA scan last year and my bones are really good even so I then broke my leg and ankle and they healed in 8 weeks. All I can put it down to is Ad cal D3! I was told as I have CKD that Alendronic is forbidden but an infusion could be done which just made people feel a bit flu like for a day or so. I don’t know if that is true as I didn’t need treatment as good bones. So yes there are alternatives and to be frank after seeing the level of pain my mum had I’d probably agree to anything to prevent that.
My friend couldn’t tolerate AA…..but she had an infusion of something called Prolia (but she’s abroad so it maybe a different name here) .That was about three months ago & she is fine on that, but I always think with infusions…how long will any nasty side effects take to wear off…with pills you just don’t take another one!
If your friend is on Prolia she must be sure to have her injections on time - as missing or even being late can cause rebound fractures. If for any reason she decides to stop Prolia she must go onto a relay drug straight away - relay drugs are often bisphosphonates.
I’m sure she is being well monitored….she seems to be at various doctors very regularly for check ups.
I see my rheumy & haematologist as needed & dreaded GP as infrequently as possible…but abroad patients are monitored whether they need treating or not! Nice little earner!
Not half and yet my college friend who lives in the US - she has a dermatologist, a gynaecologist and all sorts that I know about (and to a certain extent my oldest friend who is also American) never seem to be all that happy with their medics. I always thought if you were paying then you would get tip top service and be happy with their chosen doctors but it doesn’t seem like that.
My American friend was told there was nothing wrong with her hips - she was in agony! In the end she found herself another specialist who did two hip replacements in very a very short time and she is now back to square dancing. That knocked all my ideas of paying for treatment getting you the best on the head.
I was on Alendronic acid for a couple of years. I tolerated it ok, but developed a stress fracture in my right fibula. I wondered if it was the AA, but told it was unlikely. 18 month later I had an identical fracture to the left ankle, so AA was stopped immediately.
AA is very slow to clear the body, my dentist states 10yrs. He is cautious re any dental procedures, as AA in my system despite stopping in 2016.
My T-score was -2.1, but I have managed to turn it round with weight bearing exercise. I’m lactose intolerant so don’t eat much dairy. I still don’t take anything for the osteopenia, but it is monitored with dexa scans every 2yrs. Sorry you’re struggling, my ribs did hurt more whilst on it. However I have AS which has caused fusion of my ribs. 🤗
I have only taken 3 doses, it is 10 days since I took the 3rd tablet and my aches and pain seem to be easing I didn't take any painkillers yesterday and slept through the night! I do a lot of weight bearing exercise as my mum has osteoporosis. Am going to contact osteoporosis society see of they have any advice 🤞
I was in Alendronic acid for a while after discovering I had osteoporosis when I fell and broke my shoulder. I hated it and so was offered an annual zolendronic infusion plus daily calcium and vitamin D tablets.
The infusion works fine. It is once a year , takes about 30 minutes in total and I’ve had no side effects at any time. I’ve now had 3 so get a year off and then another dexa scan to check how my bones are.
There are some new drugs out. Romosozumab(?) is a regular injection and it promotes new bone growth. But it can only be taken for one year, after which it ceases to be effective and you have to change to another drug, such as Denosumab(?). That drug (also regular injection) only preserves old bone, which can be brittle. The drug can also be associated with atypical fractures. Despite awful dexa results, I've opted to take my chances. Or 'take more water with it' - rheumy didn't understand that joke, duh!
I took alendronic acid for a short while 6 years ago. Then I had to hav a wisdom tooth & a bak molar removed. Took 12 months to heal! Was referred to hospital & they said it was the AA. My go now wants me to go bak on it but don’t know wot to do 🤷♀️ xx
I have just recently been prescribed alendronic acid for severe osteopenia in my spine. My mother's spine collapsed and I know what agony she went through. I discussed it with my GP and told him I didn't want to take alendronic acid because of the possible side effects and wanted to try exercise and diet as I had heard that these can change the situation dramatically. My G P agreed and I now walk 2 to 5 miles a day. I eat lots of green leafy vegs, fruit and generally healthy food. I also eat 8 dried prunes a day which apparently have great properties. I have never felt better. I am not saying this is a perfect cure all because I haven't been doing it long enough to know but I will have another dexascan in a few months to see how things have changed, if at all. The only stipulation from my GP was that I take Adcal twice a day.
I walk 3-5 miles a day and have done for several years(since mum's spine crumbled), I exercise regularly, eat a diet high in vegetables and still have a problem. Will seek further advice and see what else can be done
Oh! I was quite confident this would work. Not so sure now.
Don't be put off, hopefully you are luckier than I! These are healthy habits to adopt and certainly can't do any harm x
Hi Gilliancheche, sorry to hear of your experience with Alendronic Acid. I was also on this Medication due to osteoporosis found in tail of my spine and both hips.
I switched to ADCAL-D3 to help further deterioration of my bones (everything crossed). I found that this drug agreed with me much better.
Hope you find a suitable alternative.
Good Luck.
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