Is there a chat network for people with osteoporosis in England?

[Mylovelys]

I have just been diagnosed with osteoporosis and my Dr prescribed Alendronic Acid 70 mg once a week, but after reading the side affects of taking it am unsure whether to take them. So far I have only broken my wrist bone about ten years ago when I had a fall, I have small aches and pains and have neuropathy which after a corse of six vitamin B12 injections doesn't seem as bad I am now on B12 tablets. I am 78years old and have a good and varied diet, I eat meat and fish and dairy. What are other people's experience of taking Alendronic Acid and does it do any good.

[MWZ3]

Do you know your tscores? By late 70s most people have depleted bone mass as well as all kinds of other health things due to old age. I’d base my decision on how many recent bone breaks you have had and how bad your tscores are. Even then, I’d do a lot of research before starting prolia or any of the other drugs. I baulk every time I get close to taking any of the drugs for osteoporosis.

[mollysuki]

There is a private facebook page called Osteoporosis Support Group (UK Only) where you’ll find lots of information on Osteoporosis. There’s also the helpline at the Royal Osteoporosis Society where you talk to specialists nurses about your concerns. Hope that helps.

[Osteopor in reply to mollysuki]

Unfortunately I can't find on Facebook the group you mentioned.

[mollysuki in reply to Osteopor]

Here is the link to the group

📸 Look at this post on Facebook facebook.com/share/tkRmbsVh...

[MyStar86]

there will be lots of people on here who would be able to help you that take it or have taken AA if you try another post directly asking about experiences with AA then more people are likely to respond or in the search option at the top of you type Alendronic acid it will come up with previous posts mentioning it. I hope that helps I haven’t personally taken AA but I started Zolendronic acid infusions in 2021 aged 35 however I have previously broken my hip from running and then in 2020 broke all of my ribs in multiple places then I was waiting to have a hysterectomy so I wanted to get on top of my osteoporosis before I had the hysterectomy as I knew that would only make the bones worse so that’s my reasons for taking up treatment however had I not had the breaks or hysterectomy I would not of had the infusions because I’ve been diagnosed with osteoporosis since 2015 and refused the treatments due to side effects and my bowel issues. Good luck I hope someone can offer some advice on AA x

[Lackberg]

Hi. Im 63 and was diagnosed with osteoporosis in 2022. I was prescribed aledronic acid and thought I'd got away with side affects as I had no stomach problems...but then I realised that every time I took it I got a rash across my face which gradually became worse every time I took it l, with open blisters across my cheeks. So I stopped taking it. I was then prescribed risodenrate but as that's the same group of medicines I havent started taking it yet as worried about getting same symptoms. The aledronic also made my hair grow very coarse and Im still trying to grow the effects of that out now. Probably sounds vain to stop taking for these reasons but really made me unhappy so not great side effects to live with. So I'm now at a quandry as to what to do other than eating healthy, taking vitamins and exercising?

[Errp82 in reply to Lackberg]

Hi, I have suffered from acid reflux for year. Started taking Alendronic acid after 4 spinal compression fractures in 2022. It badly affected my throat, causing a continual coughing from the acid. Eventually, I stopped the AA and had, instead, a zoledronate acid infusion last July.

No side effects whatsoever and I will be happy to have my second infusion this year.

Obviously everyone is different but I would certainly recommend the infusion.

Good luck

[mixedgrill in reply to Lackberg]

I had the hair problem on AA and never connected the 2 thank u for this info and no not vain at all mine was like thick straw or rope

[Tues]

I took alendronic acid and stopped after 4 miserable weeks! Dreadful acid reflux (even though on ppi). Generally felt unwell and ‘really old and useless ’. So unwell and out of sorts that I felt life was passing me by - made me feel thoroughly depressed! Offered risendronate. Took 1 tablet and same feelings back immediately. Stopped them. Referred to rheumatologist who suggested another drug which I refused. He wasn’t too pleased! Due 3 year dexa next week. Will rethink drugs (dreading taking them) once get results.

[Garda23]

HyperparathyroidUK Action4Change on Facebook where there are some incredibly informed people on there good luck x

[scd2211]

I feel compelled to respond to balance the responses you’ve had. I know some people can have negative reactions to taking alendronic acid but I took it for nearly seven years and never had any adverse reactions, in fact I wouldn’t have known I was taking it. I just made sure I took it with a big glass of water and I left it about an hour before my breakfast. It did improve and latterly maintain my bone density scores.

I know my bones are weak. My osteoporosis is due to coeliac disease which wasn’t diagnosed until I was 53 and lacking oestrogen due to the menopause.

Have you had a Dexa scan? You could try it. There’s a good chance you would not have any reactions.

[Fruitandnutcase in reply to scd2211]

I think you are very lucky not to have had any side effects at all although I do know several people who are like you, they just don’t come on here because they are either fine or are prepared to put up with whatever side effects they do have.

I took it for four miserable months before I stopped and by that time I was a shadow of my former self. I would get up early on a Sunday morning, take my little pill with a large drink of tap water as per instructions, set my timer and have a nice walk round town for an hour until it went off then I’d come back home for breakfast. That was the easy part.

First of all I became so tired that I’d sleep for the rest of the day - totally zonked out, then the bone pain started, my hips, teeth, ears, my vision was blurred and as well as all that I had antibiotics for four massive bouts of sinusitis. It was a horrible time. The only side effect I didn’t have was the gut / oesophageal problems I thought I might have but all in all I felt very ill.

It’s odd though how some people seem to be much more sensitive to this type of drug than others. I was offered an infusion but the rheumatologist I spoke to said she couldn’t guarantee that I wouldn’t have the same side effects as I’d had with the tablets so I declined, at least I was able to stop the tablets.

You’re right though, myloveleys can only try it and see how it is for her.

[t1gernidster]

You can take all the medication going but if you have hyperparathyroidism nothing will help your osteoporosis so do make sure you have simple blood test to ascertain whether you have this before making any decisions. Personally nothing would make me go down the route of meds, preferring to take well researched supplements, watch my diet and have as much exercise as I can manage.

[Essexgirlbythesea in reply to t1gernidster]

May I ask what supplements you take?

[t1gernidster]

Of course. I take magnesium, boron and vitamin K2-7 every day as well as vitamin B12. Some people take a calcium supplement but I have enough of that in my diet. Hope this helps.

[Houseelf in reply to t1gernidster]

This is great to hear. Have you seen that positively influence your DEXA scan results?

[t1gernidster in reply to Houseelf]

I had a DEXA scan in 2019, I have not had one since. At the time I was not told that my scoliosis would prevent an accurate result. I therefore see no point in having another. I have, however, had a REMS scan which showed a more accurate result and I may have another in due course.

[Kaarina in reply to t1gernidster]

Same here. No reliable result for spine with a DEXA as have scoliosis. With a REMS scan I get a result. I will be having my third one in 2025.

[Scandi123]

hello Mylovelys, yes, AA can be very good. The problem is that it can often come with side effects. And the other problem is that it works by interrupting the natural cycle of bone rebuilding which over time can lead to less bone thinning (good) and increased bone fragility (not good). So it’s a case of balancing the risks with the benefits, and so to answer your question “is it good” - I’d say, it depends.

It depends on how bad your scores are, how many years you are likely to need to take it for (eg some people are only in their 40’s or 50’s when diagnosed, so are looking at another 40 years of treatment), if you eat/drink enough calcium, your ability to do resistance and strength training excercises (suitable for all ages, by the way), general level of activity, etc. So each and every case is different.

NICE guidelines re the taking of Biphosphonates offer interesting statistics, so worth a read. I think I found the link on the Royal Osteoporosis Society’s website. The website in general is very good and their nurse advisers are excellent.

For me - I decided to stop taking AA. I had a private scan which showed that my bones were more dense than my Dexa scan had suggested and were not fragile. I am only in my 50’s so I didn’t want to take anything that would lead to them becoming fragile sooner than they would do naturally, so I stopped the meds. I now rely on diet, supplements, resistance and strength training.

If I’m honest it does feel a bit of a gamble - I have no idea if I’ve made the right decision - but I’m happier with this choice than I was choosing to take the medicine.

Hope this maybe helps inform you a little bit (maybe just more confusing🤦🏼‍♀️) and good luck!

[Frodoles]

Was you result from a Dexa scan? I can only tell you what happened to me. Since 2009 I have been diagnosed with Osteoporosis. But I have always been suspicious of the chemicals we are supposed to take. That's just me 😄 so I researched, I joined Inspire and met a friend Laura. She has been given those chemicals when she only had Osteopaenia. Long story short, they ruined her health. I certainly wasn't taking anything! Except appropriated supplements. Late last year I went to Osteoscan Ltd uk and had a REMS scan. Check it out and Nick Birch. I do not have osteoporosis! My Dexa Scans were not accurate. I want surprised really because other tasks hadn't resulted in breaks. Broke my hip 20 years ago. My wrist 15 years ago BUT any one would have broken them in the circumstances. I'm not advising you follow me but I would encourage you to do more research. Hope that helps.

[mixedgrill]

I was given the same medication for me the side effects outweighed the benefits I saw I continued fracturing bone s with the medication I stopped and i was about the same as i was with the acid medication without the side effects

[Moomin56]

Hi, I'm 53 and have been taking AA for about 4 months now, following a DEXA scan (after a broken hip). I have been fortunate to have only experienced mild side effects so far. The first 2 weeks I had sore gums, but this soon subsided. There was discomfort in my throat, acid indigestion, and tiredness on the day of the week that I took the tablet - this has lessened as the months have passed. Otherwise, it has been fine.

My worry about breaking the other hip or potentially a shoulder (both shoulders can be achey at times) outweighs the side effects for me personally, so I am carrying on taking AA for the near future anyway.

Everyone is different. Perhaps give it a try, Mylovelys, and see how it is for you? As someone has previously mentioned, the Royal Osteoporosis Society is a really useful website.

[Koala22]

I took Alendronic Acid for 5 years. A Dexa scan a year after I stopped taking it showed that my osteoporosis was stable so it must have worked. I stopped taking it because I had read that it was best to have a break after 5 years, but also I had had side effects with an area of my gums swelling up, requiring treatment on four occasions. I didn't suffer any gum swelling after I stopped. However, my dentist thought that a wisdom tooth was a factor in the swelling so I had it removed last week. I have now been prescribed Risedronate by my GP but I am too worried to take it until I am sure that my mouth is fully healed.

I was expecting to have stomach problems with AA as I suffer from IBS, but actually it made no difference.

If you have had a Dexa scan to confirm that you have osteoporosis I think it is worth trying AA as it seems to work and if you are unlucky enough to suffer from significant side effects you can always stop.

[ChristineK]

There is The Royal Osteoporosis Society, which has a helpline manned by nurses who are quite knowledgeable and helpful. It is a free 0800 telephone number. If you are on Facebook, there are also a few Osteoporosis chat groups on there, which are quite informative. As for Alendronic Acid, it was prescribed to me many years ago and I took it for four years. Sadly, it caused acid reflux, which I still suffer from, so it did me no good at all.

[Green_girl]

Firstly get a DEXA scan (or a REMS scan if you can afford it as it's only available privately). You can then check your FRAX score on the Sheffield FRAX Assessment Tool - which will also look at your risk level (frax.shef.ac.uk/FRAX/tool.a... . The results will give you more of an idea on whether you need meds or not. As to what drug you are offered, do research on them. the best way to get a full list of possible (not necessarily actual) side-effects is to ask to see the Patient Information Leaflet (PIL), either from your medic or from one of the drug manufacturers.

I have a very delicate gastrointestinal tract and have had horrendous side effects from Bisphosphonate (Alendronic Acid or the infused variety called Zoledronate), and will never have this drug in any form again. As to other drugs - I haven't tried anything else as I'm still in the process of rebuilding my stomach wall and flora a year later, and will not try anything which shows gastric issues in the 'common side' effects in the PIL, due to my stomach now being sensitised.

But if you don't have gut issues, you will probably be OK - but just do your research, and based on your FRAX score make the best decision you can for YOU. Remember that doctors are only interested in tackling the condition, they don't generally take much notice of the individual unless they have sight of a recorded medical issue for you.

Also research what you can do for yourself - which others have already commented on - weight bearing exercise (vital) the best diet (vital) don't smoke or drink much alcohol and keep stress to a minimum, or do something to help yourself deal with it. I wish you success in in your researches!