hi all - so looks like I finally am going to have to start on Alendronic Acid 😭.
I’ve heard such bad stuff about it, I just wondered - has anyone had a positive experience? Does anyone manage to take it without too many side effects??? I work full time and am slightly dreading having to do that whilst feeling terrible, but maybe I’m jumping the gun a bit….🤷🏼♀️
Any words of positivity will be greatly appreciated….
I am sure there are peeps who get on well with alendronic acid. They more than likely will not frequent a forum if so, as they are busy getting on with their lives. 
I will say that however many people reply that they get on well with it or did not, we are all different and until you try it you will not know how it suits you. At least with a weekly tablet you can stop taking them should you wish to do so.
hi, I took Alendronic Acid for several months and the only side effect that I had was my throat became inflamed, causing me to cough lots. That hurt, having 4 vertebral fractures some months previously. So I discussed this with my surgery and caused me to change to a zoledronic infusion instead.
I have a hiatus hernia, which contributed to the problem.
Karina is right, most people who come to the chat room are having some sort problem but there must be masses of people taking AA who have no problems at all and everyone reacts to drugs in different ways. I have friends who are perfectly happy taking it although a lot of them have annual infusions rather than a weekly pill. I’m not sure why though.
Make sure your doctors have done blood tests for possible causes - for example if it is your parathyroid glands that are causing your osteoporosis then you must have that sorted out before you think of taking medicines. I think you have got to decide if you want to give it a try, see how you feel and see if it is the right thing for you.
hi, I have it as a result of having been pushed through into an early menopause (due to cancer) and also due to some of the drugs actually causing bone thinning as a side effect. That was quite a while ago so I guess it was inevitable this day would finally come. It’s reassuring you know some people who are actually ok on the meds, (though I suspect they take the annual infusion because the tablets didn’t agree with them…😬🤷🏼♀️).
Thanks for getting back to me.
I checked back for your tscore and it’s only -2.5? Is that all it is now?
Have you tried the natural way with vitamin K2 etc?
no, unfortunately it’s now -2.9 now in my spine and 2.4 in my left fem neck. No - don’t know about the Vit K thing….🤔
That’s still pretty good. I’d hate to tell what my scores are. Vitamin K2 puts the calcium into the bones. Vitamin D is only taken if needed which is shown in your blood tests. Those scores may respond to the natural route. Worth a try for sure! There’s heaps of information on here about diet and exercise to help pull back especially when they are just into osteoporosis range.
I know many people in my support group who take AA without any problems. It is a good idea to consult in 3 or 4 years time about coming off it for a while, as many of the problems come after taking it for too long without a rest
Hi there, I have been taking Alendronic Acid weekly tablets for about a year and I'm fine! I don't suffer side effects. There was one brand that seemed to cause leg cramps in the middle of the night so I avoid that one. Otherwise I love the fact that they are helping my bones! Good luck!
Oh thank you! I am truly grateful to hear that news, I’m so anxious about starting them….😭
Hi I take it and I don't have any side effects. I was diagnosed about 14 years ago and it was quite mild, 3 years ago I had a heart transplant and the steroids have made it worse, I have a dexa next month to find out if there is any improvement. Char
that is really good to know, thank you SO much for getting back to me…
I have been taking it off and on for several years with no problems. I know several. People who H as be also had to take it... No problems. I wasn't aware there are any. My bone density dropped due to long term cancer treatment. Optimising my Vit D with K2 plus plenty of calcium in my diet did not stop or correct this. Currently haven't taken it for three years and am due another dexa scan. If all is well I won't be put back on it but they will keep reviewing it.
Personally I'm grateful for the treatment. Having your estrogen level zeroed is definately not healthy for bones!
It's important when taking it that after swallowing the tablet you drink a large glass of water and stit upright for 30mins.
Oh right, so if it helps my scores improve, I might get to stop it? I hadn’t quite realised that was a thing - I’m going to hold on to that thought!
That’s really heartening to hear that you had so few side effects you didn’t know there wee any! 😂. I’m going to hold on to that thought too….
Thanks SO much for getting back to me.
Yes indeed.... I only take it for periods of time.... They repeat dexa scans and if in range they stop it. Two other friends are the same.Important to keep your calcium intake good and to keep your vitamin D level high in the range - mine is 110. Add K2 to any vit D supplements if needed.... K2 ensure the calcium goes to your bones not organs.
My specialist tried vit D plus K2 route first but if its not enough then it's Alendronic. My bone density has improved.....
Hope this helps.
hugely, thank you SO much.
At the end of the day you DONT have to take anything. Agree with many comments to take vit k, calcium, magnesium and vit d ( but get your vit d checked 1st.)....x
I think the thing is that I’ve been taking them for a number of years now and I know my vit D levels are fine, so it feels like sadly they’ve not been as much help as I would have hoped. ☹️
The range is wide so ensure its around 100 mark. NHS tend not to treat once at 60....which actually is quite low.But if you've done all that then it maybe time for more intervention if your bone density remains too low.
what I’ve not done is the vit K thing - I’m not quite sure how I’ve met that pass me by - maybe just to busy trying to juggle life & work. I’ve just read that in Japan it’s part of their recommended treatment. I’ll need to find out more…
Also - I’m assuming my vit d is fine as I take a large dose every morning and have done for years - never occurred to me to ask for a level. I started it because about 10-15 years ago my levels were found to be “in my boots “. I had extended fatigue then and have been fine ever since, so I’ve always just assumed levels to be fine. Might go private to double check….
You can order a vitamin D test online from this place - just a drop of blood on a card. You post the card back to them and your results arrive in your email quite quickly. vitamindtest.org.uk
The other place I use for Thyroid blood tests is Medichecks - finger prick at home but you fill tiny test tubes and send them back to the lab.
I didn’t get on with AA - I tried it for four months - I also had the terrifying ‘what will happen to you if you don’t take alendronic acid ‘ talk from the osteoporosis nurse and when I finally stopped it and the hospital found out I had a phone call from my rheumatologist at home at 8.00 one night offering me infusions - I was totally unprepared when he called.
You’ve got to do what you feel comfortable with.
oh fantastic, I’ll defo get in to that!
Yep, I tend to react badly to most medicines (I suspect the dr thinks I’ve already decided in my head that I’m going not well, but that’s not the case , I’ve just come to learn about my own body…🤷🏼♀️) so I’m not hopeful about this.
Anyway, I guess I need to try it and see….😬
Thanks for getting back to me.
Here in the UK your GP can check you vit D levels or/and you can order a postal finger prick test & do it yourself. It's not expensive... Saves a consultancy fee!The only way you know for sure is via blood test. K2 simply ensures calcium goes to the bones mot organs - you will still absorb calcium. If you consume plenty of green veg you may already have a good level of K2..... Xx
Hi yes, I’m in the uk. I have asked the GP to check my vit D but was told that because I no longer have symptoms of being deficient, they won’t do it again. All boils down to NHS money, I guess…🤷🏼♀️. So I think I’m going to order a test - I didn’t even know I could do that!
Meanwhile - vit K2 now ordered and on it way! 😂
I had no symptoms of Vitamin D deficiency - I think you only get those when you're severely deficient! Also, it's interesting that in the US they consider anything less than 75nmol/litre (30ng/ml US measure) deficient, yet here in the UK they don't worry unless it's below 50nmol/litre (20ng/ml). Ideally your blood level needs to be at least 75nmol/litre, preferably over 100.
I think the measurement units are different in the USA to uk....which might account for some of the differences.
Yes, I've given the measurements for UK (nmol/litre) and US (ng/ml). To convert, multiply ng/ml by 2.5.
Yes if you look on Thyroid UK they have details of sources for blood tests. GPs talking rubbish he should've tested to check it.... Lol. NHS will test every two years for vit D.Generally what happens you get yourself to an optimum level of around 100 then work on a maintenance dose. This can vary from person to person. I seem to do fine on a low vit D3 dose but other need higher to maintain. This can only be worked out by testing every 6, months. So I'd test first before deciding what dose. Grassroots or Vitamin D Council websites have good advice on this.
grand - I’m going to order a kit tonight. Thanks for info. 😊
I’ve been using the ThyroidUK website since 2012 and it’s the most amazing resource.
I started using the companies they recommend for my blood tests because I found it pretty much impossible to get my doctors - hospital and GPs to test my blood.
So I decided instead of begging or trying to justify it I would just pay up and do it for myself. You shouldn’t have to do that. One hospital doctor treating me for Graves’ disease even said ‘What is it about testing D3 that has become so fashionable? If you can bring me evidence that there’s anything in it then I’ll do it for you’.
I went back for my next appointment armed with all the evidence to justify testing my D3 - only to discover he’d moved on elsewhere. That was when I decided I’d do my own testing.
I know Fruitandnutcase..... the system is broke. Only those who don't have to use it say it isn't. Eg. GP messed up my NDT prescription & altered it to a ridiculously low level, no consultation, so I complained. Then a phone call, GP agreed to put it back to what it was, agreed he was wrong. But he didn't so next batch said same thing. So I complained.... That doctor not back in till next week so got another phone call with another doctor tomorrow.The original prescription advice cam from a NHS Endo but still they meddles.... Even though I've been stable for years.
What pavalava.....and there is something very wrong when a patient has to take charge and correct GP errors repeatedly. I'm angry. Medical care.... You have to be joking. Patient heal thyself more likely. & beware of GPs medical care.... Danger card.
hi Scandi. The only way to find out if it suits you is to try it. If it doesn’t you go back to your Dr and say so. There are many bone drugs out there. AA Is the first ones that are offered. Some get on with them and others don’t. I’m one that didn’t get on with it but at least I tried.
yes, I’m increasingly thinking that’s the only way forward….
Thanks for getting back to me.
Hi there. You can say no. Many of us go the natural route and choose not to take the meds. Dexa scans are far from accurate.
A friend of mine took alendronic acid for ten years and was ok until she stepped out of her front door and badly broke her leg. She did not even fall and the break took several months to heal. Immediately they took her off of the meds. My mother took AA and suffered necrosis of the jaw which is supposed to be rare.
AA is simply the first and probably cheapest option offered. It may make the bones heavier or denser but not stronger. Brittle bones are more likely to fracture so to me it made no sense to take it. There are other meds available which are better. I suggest you have a chat with a few pharmacists who know more about the meds. Even having done that I chose to go med free.
The choice is yours, please do not feel that you have to take what is offered. We are all different. Do some research and go with your gut feeling and instinct.
Di Doh
I started AA last week and have now taken 2 of them without any side effects at all. I think you need to take it carefully - ie first thing in the morning with water and you must remain absolutely upright for 30 minutes. I sit up very straight on a stool and do wordle and octordle! Now the theical-D3 tablets that I am supposed to chew every day - that is another thing as they contain aspartame which WHO is about to reveal is carcinogenic. So instead I am taking 1 x Lamberts Vit D3 1000 and 2 x Lamberts Advanced Osteoguard daily. I am -3.2 and fought for a whole year to get a DEXA scan even saying I would pay for it. That annoyed me because I should have started this treatment a year ago.
thankyou - that’s really heartening to hear that you have no side effects!
So sorry to hear that you had to fight for your scan - as you say, precious time wasted.
Disappointing news
What exercise is good?
Any difference in gains taking forteo at night instead of morning
No meds can help - ANY FURTHER OPTIONS - please?
Any advice would be greatly appreciated!!
