Query relating to Alendronic Acid

[CDPO16]

HI all,

I took Alendronic Acid for 2 years after prolonged courses of prednisolone in 2016, only finding out more about it after starting the treatment. Last year I had increasing gastric upset and did not want to add proton pump inhibitors to my list of meds and I also had dental problems (resolved) but made more complicated by the Alendronic Acid. I spoke to the GP who prescribed it for me last year and requested a break from taking it to which she agreed. I still take Adcal twice daily.

This year I have had a lot of problems with my breathing, several courses of prednisolone and an increase in the dose of my steroid inhaler. Things have just begun to settle down but I am now being reviewed regularly by a different GP in my group practice. He is not happy about me having stopped taking the Alendronic Acid and has arranged for me to have a Dexa scan, never having had one before.

I know that I am at high risk of osteoporosis and am not looking forward to the scan results but my bigger concern is that I really don't want to start taking the Alendronic Acid (or alterantive biphosphonates) again. I also don't want to appear to be awkward with the GP who has been very good with me this year and who I know only has my best interests at heart. I know that in the end the decision has to be mine, but any thoughts will be appreciated.

Thanks, Carole

[Hidden]

I can suggest two things for you to do, first visit theros.org.uk/ (the Royal Osteoporosis Society website) and ring the helpline for advice. Also join the Bone Health community (healthunlocked.com/bonehealth) and ask this question on there, There are some very experienced members who will be only too happy to advise you.

[CDPO16 in reply to Hidden]

Many thanks for your suggestions, both very helpful.

[CDPO16 in reply to CDPO16]

Hi,

As a result of your suggestion I have joined Bonehealth. I haven't posted a query as yet but am following some recent posts which cover queries similar to my own.

My head is awash with information that I am trying to digest (not as easy as it used to be when I was younger!). One point made on that forum recently to one member was to see what treatment options her GP suggested following her scan and then take time to make an educated decision. There is also much discussion about supplements which 02Trees has also told me about.

I hope that you are as well as can be. Carole x

[Kittykat2]

Bone health on HU is very good to ask your questions.

I personally couldnt tolerate the stuff and chose not to take it a few years ago now.

Everyone is diff though but if you go on the HU site for it loads posts about AA.

I learned a lot after it was prescribed also ,that didnt sit well with me .

I have pretty bad osteoporosis too.

Think they would have been better to do a dexa scan for you before prescribing it to see where your at but just my opinion.

Ultimately its up to you and your choice whether to take meds.

Hope you get sorted whatever you decide.

I just take calcium /D3 but there is another alternative to bisphosphonates

that some take .

Take care X

[CDPO16 in reply to Kittykat2]

Belated thanks for your reply. Yes, perhaps an earlier bone scan would have been better but it wasn't offered at the time and I didn't think to ask.

[AngieB72]

I can’t take the alendronic tablets due to other medication so I have it intravenously once a year - this may work for you.

[pegbl]

I couldn't take Alendronic acid tablets after being diagnosed as having osteoporosis in my spine...... I went on the Osteoporosis site and having read some of there helpful comments decided not to take it. I went on a better diet and exercise plan and also take the adcal.... that was three years ago I've recently had a further scan and my bone density is holding its own no more deterioration in three years. I'm happy with that outcome.

Best of luck xxx Peg

[CDPO16 in reply to pegbl]

Thank you, Peg, for your reply. I am going to post on the osteoporosis site as suggested by poemsgalore1 and yourself and hope that I am able to make a decision when I get the scan results. Good to know that your plan has worked for you; I hope that you continue to do well in that regard. Carole x

[O2Trees]

I took alendronic acid for about two years over twenty years ago. I ended up with Barretts Oesophagus (pre-cancerous condition at lower end of oesophagus) as it causes reflux, often even if you carry out the instructions to stay upright for at least half an hour after taking it. My teeth were affected too, and it can cause severe jaw problems as well.

I had osteopenia but my last dexa showed osteoporosis in my hip but my spine had improved. Ive been taking Vitamins D3 and K2 (very important as this directs the calcium to your bones which helps avoid calcification elsewhere e.g. kidney stones), plus magnesium which works synergistically with calcium. And I lift weights as part of my overall health/copd maintenance programme.

See what they say on the bone health site but my information is that fractures aren't automatic with osteoporosis - I fell off a ladder when decorating a year or so ago. Landed heavily with lots of bruising but no breaks/fractures. I can only speak for myself of course but Ive found that some doctors tend to go onto auto-pilot with things like osteoporosis and try to push stuff like alendronic acid despite newer theories.

Balance is important to work on - something like 80% of hip fractures result from falls.

Remember - it's your body. You dont need to defer to the doctor if you're not happy about what he/she is suggesting. You need to be working in partnership with medics and be clear about your concerns and your boundaries. If you're polite and clear about your needs, you wont be perceived as awkward so dont worry about that. Good luck

[CDPO16]

I appreciate your reply very much, 02Trees, as I know from previous posts of yours that you have had problems resulting from alendronic acid. I was not aware of vit K2 so will look into that. My dentist wasn't happy about the alendronic acid ( I am likely to have more dental problems in the future) but my GP said that doctors and dentists don't often agree, but apart from research, I found out more about the drug from my dentist than from my GP team.

I have a lot to take into consideration, but your words about working in partnership with the GP are very reassuring although I need to work on my confidence to do that.

Wishing you well.

[Balloo]

Hia just ask for the injection I have twice a year & really who’s body is it . Most women have osteoporosis after menopause.

[CDPO16]

Thank you for your suggestion. I have a lot to ponder on now.

[Kittykat2]

AA made my stomach really bad and aching bones awful stuff for me.

Aĺl the bisphosphonates are similar .

For me personally I couldnt imagine taking a years worth in one go but thats just me.

When I decided not to take it they did a risk assessment and even though my osteo is pretty bad I was under the red area for high risk. never broken a bone never fractured and few more things were asked.

I surveyed AA a lot and def didnt like what I read about what it actually does

Apart from side effects.

Not saying this is anyone elses way to go

Im no doctor and it was my choice not to take it.

I have two relatives on it who have broken or snapped bones since ...I still havent touch wood.

Make your own choices which way to go .some on bone site HU are on strontium thats not a bisphos but suppose that has its own effects etc.

Do what feels right for you X

[CDPO16 in reply to Kittykat2]

Thank you for your reply and for encouraging me to do what feels right for me which is something I have done more often in the past. As I get older I am less confident in making decisions.

I have to say that an injection doesn't appeal nor does resuming oral medication. Like you I am in the red zone of risk but have never had a broken bone. The GP took into account the fact that my mother once fell and broke her hip but she was 94! I have been reading some of the posts on HU Bonehealth but not yet posed a question there.

Best wishes

[Kittykat2 in reply to CDPO16]

I wasnnt in the red zone just out of it according to all my answers maybe I typed that wrong so they let me decide without any pressure..

Stay well x

[Shellc]

I’m with o2trees I was prescribed AA too but declined , for the last year I have been taken vitamin d 5000 icu a day along with k2 and magnesium and have no sign of osteoporosis, another bonus is that my infections have cut down and when I do get them they are less severe thus not having to take large quantities of steroids although I’m on 5 mg a day and looking at starting to stop them too. Incidentally my partners grand son has been given the yearly injection and seems since he’s had it he’s been getting lots of muscle and ligament pain in back and hips, does any one if this could’ve side affect of this treatment

[CDPO16 in reply to Shellc]

Thank you for your reply. Good news that you are getting fewer infections. I hope you stay well.

[Response]

Hello - I'm not a doctor so perhaps you can see if there is anything you can take from my mother's issues (82 at the time) had after she stopped Aledronic acid for 2 months while waiting to be diagnosed (Mycobacterial Avium Complex & Bronchiectasis) .

After stopping she was scanned and told her bones were "soft" (word that the consultant used), and her spine had curved more. She resumed A Acid (with a glass of water before taking the pill, and one glass for swallowing - recommended by the chemist ) and although her spine has curved more, her bones seem stronger as she fell this Sat (on carpet) and nothing broke.

One thing I would mention is to check your calcium pills don't contain sugar. My mum used to take chewable ones and then we discovered terrible tooth decay issue. For some inexplicable reason they put sucrose (sugar) in the chewable versions. There are varieties without sucrose that you swallow. As my mum needs antibiotics for her Bronch, I'm very scared of her taking more antibiotics for taking out some roots ( plus there are jaw bone related issues that can happen with aledronic acid which you probably know about) so although don't know which is riskier, she decided avoid the risk of having the root removal work recommended by her dentist. (Not sure they really understood aledronic acid well to be honest).

Websites about A acid scare the hell out of me but overall the result has been positive for my mum. So I think speaking giving a holistic view of your situation to your consultants will help them give you the best solution for your case.

[CDPO16]

Thank you for your reply

[O2Trees]

Hi Carole - in case you are interested, here is an article on a good site from the U.S. They concentrate more on alternative methods of helping our bone density and have a good free e-book you can download, and a regular newsletter sent by email.

saveourbones.com/study-find...

They also send out regular simple exercise programmes which I use a lot.

There's another which I'll add when I find it again, called something like Women's Health.

[CDPO16 in reply to O2Trees]

Thank you 02Trees,

I had a quick look and it sounds very interesting and the exercise programme would be very useful as my ability to exercise is getting steadily less as my lungs worsen.

I have to confess that my head is a whizz at the moment with all the response and information I have had! Poemsgalore was the first to reply to me and she suggested that I post on the HUBonehealth site which I thought was a good idea but I'm not sure not sure my addled brain can cope with more suggestions just yet, so I have held off on doing that for now.

Wishing you well, Carole x

[O2Trees in reply to CDPO16]

You too Carole