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I have osteoporosis and have incurred several spinal fractures

Errp82 profile image
19 Replies

I am now being asked to take alendronic acid and I’m a little scared. This seems to have so many severe side effects.

Does anyone have any advice on this?

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Errp82 profile image
Errp82
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19 Replies
Met00 profile image
Met00

Have you had tests to check for the underlying cause(s) of your osteoporosis? Before starting meds, you should have blood tests for parathyroid, calcium and Vitamin D levels (done in the same blood draw), thyroid, coeliac and a full blood count. Sometimes if the cause is treated, the meds aren't needed, particularly if you have hyperparathyroidism. If you do decide to take the meds, many people have no side effects at all, or if they do have problems can stop taking the meds. The more serious ones that you may be concerned about are very rare and usually only happen after a long time on the meds. It's advised to get a dental check-up before starting the meds and get any treatment done first.

Yatzy profile image
Yatzy

Hi! I’m in exactly the same position as you, Errp82, so I’ll be very interested in any replies you might get. I rang the helpline at Royal Osteoporosis Society (ROS) 0808 800 0035, for advice. Very helpful but couldn’t really give advice without actual DEXA scan results. My GP and MSK specialist at my surgery both said could only give me the bottom line of the report….you’ve got osteoporosis and need to take alendronic acid.

But like you I’m very hesitant.

I’ve finally, with persistence, got the figures, T score -2.6. I’ve read on this forum that REM scans can be more precise, so I’ve got a private appointment for one of those, plus feedback, in July.

I’ve just read the helpful comments from Met00 above, so will consider blood tests as well.

I plan to get back to the ROS helpline when I’ve got more info, the nurse said she’d talk me through all the meds and possible side effects to help me make a decision.

But it’s quite a worry, isn’t it? I tend not to tolerate drugs very well, I’m always the one in a hundred who has side effects! So don’t want to rush into taking the AA.

Meanwhile I hope I don’t get any more fractures…..feel as though I’m on a tight rope!

Fruitandnutcase profile image
Fruitandnutcase in reply toYatzy

To be honest I wouldn’t ‘consider blood tests’ I would insist on them before you start taking any drugs.

It good protocol to do all of those bloods before starting on bisphosphonates or whatever chosen treatment they have in mind. The end result may be the same - they want you to start on alendronic acid - but at least you will have ruled out other possible reasons for your osteoporosis.

If your osteoporosis is caused by your parathyroid glands then taking AA without fixing your parathyroids is a waste of time and won’t fix the problem.

Yatzy profile image
Yatzy in reply toFruitandnutcase

Thanks for that, I’ll try to get a blood test sorted, sounds like sound advice.

Scandi123 profile image
Scandi123 in reply toYatzy

I know exactly how you feel!!!

barani19 profile image
barani19

Errp82 ,Better to avoid bisphosponates/alendronic acid. It disrupts the osteoblast-osteoclast cycle. Even though, you may see improvement in your DEXA score, bisphosponates are harmful in a longer run. Whey protein improves your DEXA score naturally.

cmoc profile image
cmoc in reply tobarani19

Hi, I am interested in the whey protein . Can you give more information. Is it the same as Lactoferrin?

barani19 profile image
barani19 in reply tocmoc

cmoc ,Whey protein is composed of several bioactive fractions including glycomacropeptide, β-lactoglobulin, α-lactalbumin and lactoferrin.

Please make sure you buy organic unsweetened whey protein powder.

Fran57 profile image
Fran57

Hello. It’s difficult, isn’t it? I would advise that you definitely have your parathyroid checked ( nothing to do with the thyroid)…it’s a major cause of osteoporosis ( it was for me and my GP had never heard of it, until I researched it).

Good luck, stay safe,

Fran 😷

Yatzy profile image
Yatzy in reply toFran57

I’ll look it up, not thought of going down that route, thanks.

Killbill234 profile image
Killbill234

My scores are 4- so decided to take alendronic acid. After a year my scores have improved. I have 3 grandchildren I need to look after!

Nottinghamryan2 profile image
Nottinghamryan2 in reply toKillbill234

I love your reply I also have grandchildren to look after 3 of them are toddlers , my spinal score is -3 , hip - 2.8 decided to take AA autumn after months of indecision and have had no side effects whatsoever, take care x

Mavary profile image
Mavary

I can only tell you how I was. I took one Alendronic Acid tablet and was violently sick the next day. Luckily I was in hospital flat on my back when it happened and I was taken off of them. I was then given Terraparatide which was fine. I know a lot of people can take them so why don’t you just give them a try. Like me you can always change to something else if they don’t agree with you. My Husband took them and he was fine on them.

Looby60 profile image
Looby60

Hi there . I have several spinal fractures so of course out came the alendronic acid .

Like you I was very concerned with side effects and also initially I was in too much pain to even wait half an hour for my pain relief .

Long story short teriparatide didn’t agree with me unfortunately, plus I was concerned after 2 years that I would need to have infusions . After much discussion and blood tests I decided on risedronate .

I have been on it since December and touch wood I have been ok .

I have stomach /gastric issues anyway so was very wary . I follow the instructions to the letter every week .

I have a blood test coming up which will show if it is working for me .

Fingers crossed .

Cappuccinobaby profile image
Cappuccinobaby

Definitely get hyperparathyroidism ruled out first. The Royal Osteoporosis Society told me that if my endocrinologist prescribed it then it would be beneficial. I've since had a parathyroidectomy and my surgeon says my bones will improve get your bloods checked !

wisewoman108 profile image
wisewoman108

I had 6 spinal fractures in 2021 and my x-rays showed I had lost 40% bone. I didn't want to take AA because I have IBS but at the same time was terrified of getting more fractures. My doctor was very helpful and suggested that I try 10mg every day rather than 70mg once a week. That worked well until the 10mg tablets went out of stock, so I had to change to the weekly 70mg. It was absolutely fine so I continued with it -no side effects at all. Two weeks ago I fell over on the road and voilà no fractures! I was so pleased and felt that I had made absolutely the right decision. I have of course also been taking all the right bone building vits and minerals plus prunes! Daily walking and appropriate exercises are also important to strengthen and align the body.

Scandi123 profile image
Scandi123 in reply towisewoman108

Why prunes? Are they bone building? Do you mind me asking what other supplements you are taking?

wisewoman108 profile image
wisewoman108 in reply toScandi123

Yes they are! They contain Boron which is bone building. I take 6 a day. The other supplements I take for my bones are calcium citrate, magnesium citrate, Vit D 3000 iu, K2 Mk 7, selenium and zinc.

Scandi123 profile image
Scandi123 in reply towisewoman108

I had no idea! I’m going to get some at the weekend!😂 And thank you for letting me know what else you take, I’ll do a bit of research.

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