Of course the answer to this can only be made by the individual, however other people's experiences and ideas can be very helpful in decision making..
In order to make an informed and balanced decision for myself I am asking if there are any positive comments and outcomes regarding this drug that people are prepared to share? Any independent studies/research that people have found helpful?
I am posting from the UK, am 70, have T scores in the -4.7 region(minus) and a compression fracture of the T11 vertebrae. I have been fit and active all my life and very surprised to be diagnosed with osteoporosis. Because of the activities I undertake, skiing, climbing, mountain walking, my doctor puts me at high risk of further fracture and is recommending Alendronic Acid.
Thank you
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Anadablam
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If you put Alendronic Acid in the search box on top right hand corner where it says Search Healthunlocked with a tiny magnifying symbol beside it, you should find lots of individual stories there on various postings. There is a filter for you to use for most relevant/ recent. I regularly use it for various health topics.
Thank you for that, have had a good look, not many positives for AA. Just wondering if people are not so inclined to post of things are working well for them?
Hi there. Like you I am fit and well, except for the osteoporosis. I am 66 years old and live in the U.K. I have been on Alendronic Acid since September last year. I had some flu like side effects which have subsided now. I have decided to continue the drug.
I found my GP gave me no support, however there is a lot of information online. Melio Guide and NOS, a U.K. online resource. I plan to attend the NOS local group in April this year.
Thank you for your reply as so far I have found few posts where people seem to continue with the medication after an initial short period.
After much deliberation took my first AA yesterday. Will see how I go. Have joined NOS and spoken to a nurse there, who appeared to be very positive about AA assuming this is backed up by their independent research??
I am almost 60, female and started taking AA 4 months ago after stress fractures in both feet within a 7 month period and a diagnosis of osteoporosis/osteopenia following a dexa scan. I was shocked and rather depressed about it as i am otherwise healthy nd look after myself in terms of diet nd exercise. I did loads of research on both my condition, medication nd exercise. I hate taking any kind of medication for anything but experienced so much pain and discomfort with my fractures that medication seemed appropriate to avoid a more serious fracture.
During the first month I experienced headaches (which i never get normally) a bit of bowel disturbance and aches nd pains in my thighs nd jaw. However 4 months in these side effects appear to have subsided. I have questioned a private dentist about the potential teeth nd jaw issues (necrosis) and he told me this is quite rare nd can be triggered by dental surgery, extractions nd/or poor dental hygiene. So do look after your teeth
The other side effect that worried me (call me vain if you like) was hair loss. As a post menopausal women my hair definitely isnt as thick as it was in my 30s but i havent noticed any significant further loss at this time. I read somewhere that the hair loss doesn't effect everyone and can happen if you also take thyroid medication or medication for cancer. I have joined NOS and think they are great plus i dont feel so alone with this condition.
Other than the tablets the NHS provide no support or advice for this condition in my area unless you have to be hospitalised. I am also disappointed that i wont get another dexa for 3 years from the NHS so might go private nd hav it done sooner to see if the drug is making a difference to my dexa score.
It is very much an individual decision and what you decide initially re taking AA night need to be reconsidered over time. If i hadnt had the fractures i wouldn't have known i had the condition so at least i can now try my best to address all aspects of it. I also think that the dexa scan should be carried out as a precautionary measure like breast screening, cervical smears and the poo test for bowel cancer (when you ger to 60)
Thank you for such a comprehensive reply. I agree with your comments regarding re scanning and reconsidering as time goes on, rather than just taking the medication year on year.
I believe I read somewhere that it takes 2 years for any noticeable difference to show up on a DEXA, if I do continue to take AA I will be requesting a scan at that point, even if I have to pay.
Hi PonyJ. If you go for a private scan, ideally it should be done on the same machine as your previous scan, otherwise there can be machine differences, making it harder to compare results.
There are those that do get on well with AA and that is why they are probably not on a forum as they are too busy getting on with their lives!
Members tend to be here either to learn more from others or because they have questions to ask because they have just been diagnosed and their GP is unhelpful.
As you say, you have started the AA and you will soon know if it agrees with you or not. I am a member of NOS too and also attend the meetings at our local NOS branch group once a month.
Thank you for your reply. It certainly is most helpful to learn from those who are experiencing osteoporosis first hand as most GP's of course will not be, I assume they will just be following NICE guidelines to the letter? I have already had several replies to my post which is pleasing and will continue to read and research as much as possible as of course one can always change one's mind regarding what one feels is the best course of action.
Hi there, this is what has happened so far. I have now taken 8 AA tablets at 1 per week. I have followed the instructions as to how to take to the letter, in fact I get up take the tablet with a full pint glass of water and then go for a walk for 40-60 mins.
Apart from a med I take for a small heart condition, which I now take later that day, I have stopped all other supplements in order to know if AA is causing me any side effects. To date there have been none.(I appreciate this is early days yet to be confident but so far so good).
After another 4 weeks I then intend to introduce the other vitamins, minerals etc that research indicates are necessary for the AA to be most effective, such as Vit D, K2, Magnesium, Calcium, but again gradually. There is a lot of information on this site given by people who have done far more research than me who may not think this is a good approach but with very little help from the medics we each have to do what we feel is best for our circumstances.
I have also been going to the gym since August 2018 twice a week for weight and balance training and walk at least 2 miles every other day. I appreciate this may not be possible for everyone, but I have been active all my life, hence the surprise at the really, really poor T scores.
I am off skiing which with osteoporosis and an artificial hip some would say is rather reckless, only time will tell, but I want to live my life as I wish until such time as that really is impossible (hope that's not sooner rather than later).
Don't know if any of this helps other than I do find it a comfort to know that there are lots of us trying different ways and giving our ideas to tackle this challenge.
Hi I've been on AA for nearly a year now. I was found to have a wedge fracture of T11 and after a Dexa scan was told I too needed to start on AA as had a high risk of further fractures. I worry about taking drugs if not needed, but I just take it every week and seem to be fine on it.
I have no support from my GP at all on this other than being told "you need to take this". I'm in my late 50's and obviously don't want to incure anymore fractures. I do worry about side effects of taking AA but try not to overthink it.
Thank you for your reply and very pleased to hear that you are 1 year in and still continuing with the medication with no apparent ill effects.
I certainly have been doing the overthinking bit, it's difficult not to when AA seems to be the treatment of choice from those we should be able to trust with our health, but is mistrusted by many with the condition.
I wanted, but was refused Strontium Ranelate in 2010 by my GP, after breaking both wrists in the same fall. In desperation I tried AA, but stopped taking it after 10 weeks due to bone pains, that felt like the 'growing pains' I remember from childhood. I was also beginning to have daily indigestion, which scared me as I had suffered a bleeding duodenum ulcer some years before.
One problem I find, is that if I'm expecting side affects, I'm more prone to getting them. This could well have been a contributing factor, as I was very stressed out at the time, with having suffered the pain and inconvenience of having both arms in plaster.
We all react differently to medication and several of my friends have been on AA for years without any problems. The advantage of taking a weekly tablet apposed to infusions, is that if you have problems you can stop taking the AA tablet, whereas infused bisphosphanates stay in the system much longer.
Thank you for your reply. I can certainly empathise with your comment about expecting to get side effects and then getting them, almost waiting for them to happen because they are outlined on the leaflet.
At least too with the tablet once a week one can monitor side effects and continue or stop accordingly.
I can't comment as have only taken 1 tablet, am probably more interested at the moment as to the efficacy of the treatment, ie does it work?
It seems from current information that two or three years of a bisphosphonate will help to increase bone density. After that the new bone is being laid on an increasingly aging matrix, as bisphosphonates prevent bone remodelling, and that's when the risk of spontaneous fracture from brittle bones increases. This is why it's a very good idea to do all the natural things as well as taking the medicine so that you are poised to be able to discontinue the drug when necessary and not have to turn to another, possibly more problematic, drug. One thing to know before starting this medication is you need to have adequate calcium levels in order for them to work.
Thank you for your reply. You are obviously very well informed and I appreciate the information regarding how AA works and the importance of Calcium levels. I had a blood test and doc has prescribed calcium and vit d in addition to AA.
Just a thought from me but I have read that we need to take vit k with calcium and vit D otherwise there is a risk of heart disease and stroke from calcium supplementation. Does anyone know more about this?
Hi, It's vitamin K2 that you need to supplement with, as well as calcium, magnesium and vitamin D3. They work together to ensure that the calcium goes to the bones rather than the arteries.
Hi, I’m so sorry to read about your scan results. We’re the same age, but for me it was entirely unexpected, as I went through the menopause at 32.
I opted to go down the natural route and declined AA, as I only have isolated osteopenia in my spine following a L3 fracture, which was at the site of a previous injury. On the DEXA scan my hip was quite dense.
Instead I’m taking Turmeric capsules containing curcumin and black pepper, as it can increase bone density by 7%. Every little helps, as the saying goes and It also has a huge number of other health benefits. Green Med Info has articles and links to evidence based research.
I’ve been taking CBD for several years for pain control, but only fairly recently discovered that the cannabinoid receptors play a role in building new bone. See here:
This is probably why my lower leg didn’t break despite being severely crushed in a freak accident. The injury is still healing almost 7 months later.
I’m a big fan of CBD, as I’ve seen my asthma improve enormously too. I was apprehensive about taking it initially, but had to come off all my pain meds, due to side effects. If you’re interested, I’ve produced a hints and tips sheet - let me know and I can send it to you via Health Unlocked.
Both turmeric and CBD thin the blood, so do seek advice if you’re on warfarin.
I’m also taking vitamins C and D and eating a diet rich in vitamin K2. Plus I’m keeping an eye on my calcium intake by using this calculator.
I was useing a Vibrapower oscillating powerplate prior to my leg injury, which has been been proven to reduce the decline in build bone density in post menopausal women. My husband added a grab on the wall so I could hold on in the beginning and I use a garden kneeling pad for the kneeling exercises.
Hi Anadablam, I think perhaps you’re thinking of medical cannabis, which is currently only available on prescription, for a small number of conditions.
CBD is legally available to purchase in the UK, as it contains less than 0.2% THC, which is the component that provides the high. Sadly, it’s not available on prescription, despite having a range of proven health benefits.
I am in a good place, despite having tendon issues in my legs, back and shoulder, following a rare reaction to antibiotics, but I’m optimistic for the future. I’ve gone from being unable to walk or feed myself in September and October, to being able walk short distances by Christmas. It was a scary reminder of how quickly things can change. I’m just grateful to be mobile again and I’ve set myself a number of goals for the coming year.
I liked your approach. I am 61 and just been diagnosed with Osteoporosis severely hit on my lower back . However the rest is ok . I too like to take the complementary route and will try your routine. Thank you . I appreciate any other info you may have to share. Thank you.
Hi Cudi6, I've been taking probiotics for a number of years now. I take Opti-Bac Everyday and also add kefir and natural yoghurt into my daily diet. Probiotics have been shown to reduce bone loss by up to a half. There is a very good Science Daily article, but I can't post the link as it contains advertising. Try asking google for probiotics for bone health. It's based on this research article:
Journal Reference:
1. Anna G. Nilsson, Daniel Sundh, Fredrik Bäckhed, Mattias Lorentzon. Lactobacillus reuteri reduces bone loss in older women with low bone mineral density - a randomized, placebo-controlled, double-blind, clinical trial. Journal of Internal Medicine, 2018; DOI: 10.1111/joim.12805
The latest version of my help sheet for CBD & turmeric/curcumin
I was diagnosed two years ago after a fall which resulted in two spinal fractures. My dexa score was -4.8 in my spine. After a lot of thought and worry I decided because of my high fracture risk to take the AA. Apart from sometimes getting a headache the day I take the tablet I have no other side affects. I have been taking the AA two years in April, I have just had a new dexa scan and my spine is now -4.4 so a move in the right direction, no change in my hip density but that was in the Osteopenia range. I also go for a walk every day, do free weight lifting at home and floor exercises for my spine 2-3 a week also balance exercises and I have just started doing tai chi following a video on YouTube, I really enjoy that as it is so relaxing. I still worry at times but so far so good, my sister has been taking AA for 7 yrs with no side affects and she has never had a scan! There is a post on Inspire called 'Positive Results from Osteoporosis Meds,' this is a long post aimed at giving positive results from Osteoporosis meds, although some people still do post negative feedback there, take a look it may help you.
Thank you very much for your reply and it is good to hear that someone has had a scan at the 2 year point and had shown some improvement. Are you carrying on with the medication for another period of time?
After lots of deliberation I am going to give AA a go as exercise/ activity has been a very, very high priority in my life and yet I have not avoided very poor DEXA scores.
Hi, yes I will continue with the AA , I have always been an active person and that did not prevent me getting Osteoporosis so I don't think exercise alone is the answer .
I have just read your interesting post and It’s good to hear that your latest Dexa Scan showed an improvement in your spine.
I will have been reluctantly taking the AA three years this summer when I hope to be allowed to have another Dexa Scan.
I am unable to find the post on Inspire about the ‘Positive Results from Osteoporosis Meds.’ Could you possibly give me more details on how to find this article please. Thanks in advance.
Hi, the starter of the post is Windblown , I am on holiday at the moment but if you still have trouble locating the post just let me know and I will try to be more helpful,
Many thanks Mileydog. I will have a look at Windblown’s post.
Enjoy your Holiday!
Like you I was concerned after reading the side effects, but I have taken care of my health and fitness and yet have still sustained 3 ankle fractures in 2 1/2 years. I have now been diagnosed with mid range osteoporosis so realised dietary and/or fitness changes would do little to improve things. I've been on AA for a short time, but despite fearing side effects, have thus far not experienced any. I hope things go well for you. It really is a shock to your system when diagnosed isn't it?
Thank you for your reply. Yes it is a shock, not what I expected at all. Alongside the AA I will be trying to continue with all my previous activities, despite still being in quite some pain/discomfort from my vertebral fracture and taking not of the experience of others on this site.
Hope all goes well and stay positive.
Same here, I go to the gym daily and I do Pilates, Spin, Aqua aerobics and weights plus a good dog walk each day. I must admit the diagnosis has changed some of the things I do and some of the ways I still do things. I do get a bit down sometimes but I always remember that life for some is much much worse.
Hi been on AA for three years no side effects, GP informed me that he will only prescribe it for another 2 years? don’t know what to do after that. Has anyone else been told this and what’s the reason. Many thanks. Gill
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