Warning about alendronic acid

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Today I attended the hospital where I saw an osteoporosis consultant.  I am 72 and had been told that I had low bone density in 1999 and in 2005 was diagnosed at high risk of spine fracture and lower risk of hip fracture. A month later I was started on Actonel and was on it for seven years then changed to Alendronic Acid for another three years, so ten years in total. I decided to stop it in 2012 as I had been on it a long time and was also getting aches in my thighs and muscle weakness where my leg would suddenly give way. Two years later, while still off the tablets, I slipped in the garden and broke my femur and had a femoral nail inserted and was put back onto AA for another three years.  In September 2017 I stopped again as I was getting aches in my thighs and occasional muscle weakness like before and anyway, I had been on it for three years so decided I would have another "holiday".  

As I said, I saw a consultant today who was concerned about the pains in my thighs as it could be a sign of a "rare" side affect of AA where it causes fractures of the femur called atypical thigh bone fractures.  They occur after little or no force and in many cases there is a history of pain at the site of the fracture, in the thigh or groin for a few weeks or months prior to the break.  He sent me for some x-rays and when I went back into his office he told me that there was a very small horizontal crack half way down my femur that he now knew was DEFINITELY caused by AA and I was NEVER to take them again.  As if that's not bad enough, he's going to contact an orthopaedic surgeon to see whether I need a femoral nail put in my leg!   I have problems with my bone marrow that has caused low red and white blood cells as well as low platelets which are responsible for blood clotting so it may not be an option.  He said that atypical fractures are "rare", (it's something like 5 in 10,000) but he believes that there are people who have had atypical fractures that haven't been linked to AA at the time so not quite as rare as first thought.  He showed me a picture  of an atypical fracture and said that my fracture was exactly the same.  There is an osteoporosis treatment that I could end up having, it's called parathyroid hormone treatment (teriparatide) and is given via a daily injection under the skin for a maximum of 24 months.   As I have diabetes and inject myself four times a day this will be yet another injection!   I am expecting a phone call off the doctor in a couple of days, after he has found out what the next step will be.  I asked if I could do anything about it and he told me to keep taking the calcium and Vitamin D tablets and not to do anything like rock climbing or contact sports (just as if!!) and gentle walking rather than brisk walking as there's a chance I could break my femur with minimum force. (I read about a study done in South America about sudden femur fractures and 90% of the people were or had been on alendronic acid!)

Sorry this has been a long message but this is to warn people who have been on AA or other osteoporosis drugs like risedronate, ibandronate, zoledronic acid and denosumab for some time that if they start to get pains or aches in their thighs or groins that they shouldn't dismiss it but see their doctor. It's only mainly been reported with AA but this could be because it's the most common treatment.  I hope this has been of some help to those who think taking AA is good for them, it isn't.

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  • Posted

    I have refused AA and the rest after research. Were you ever even given your tscores to know if the treatment was warranted in the first place?

    There is a natural way to address osteoporosis and many people are now doing that and some are reporting positive results.

    Some people with broken bones have been found to be lacking magnesium.

    Many are now taking vitamin K2 which aims the calcium onto the bones.

    Diet is also important. Fruit and vegetables, yoghurt, leafy greens, bony broth, prunes, avocados and cucumber skins are some of the foods with nutrients bones require. Grass fed products like meat and dairy are also important,

    People are doing the research that big pharmaceutical companies don’t want people to know as they want us on these drugs even though they are not safe.

    Research and empower yourself and read all the posts on here.

    I wish you all the best and am sorry for your dilemma.

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  • Posted

    I am so sorry to hear about your troubles.  Water under the bridge now, but it is a pity this was not more widely known before and your second round with AA would likely have been avoided.  I don't know if Forteo will undo the damage you've sustained.  There's been at least one class action lawsuit against the manufacturer concerning this drug.  I think it would be wise to hold off while you do some research.  It sounds kind of scary to "do nothing" but maybe your best move at the present time would be to read up on the so-called natural methods.  There has been some research done showing that nutrition, supplements and appropriate exercise can work as well as medications like the bisphosphonates you have been on, but there are no adverse side effects.  The thing I don't know is how that may help someone who has already sustained a so-called atypical fracture and may be at risk for another.  

    This was posted the other day:

    https://patient.info/forums/discuss/canadian-study-on-osteoporosis-therapies-639383

      

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  • Posted

    Did you ever actually get your tscores? Do you know the present ones?

    There is much you can do naturally.

    Vitamin K2 puts the calcium onto the bones.

    Fruit and vegetables, yoghurt, leafy greens, avocados, cucumber with the skins left on, prunes, bony broth and grass fed meat and dairy.

    It has been found that many people who have broken bones are deficient in magnesium.

    I am a diabetic too and like you probably have small regular meals.

    i am sorry you have been through such an awful experience.

    Like Anhaga has said do some research and reading and look at the posts on here about osteoporosis.

    And maybe find out your present tscores as they may not be so bad after all.

     

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  • Posted

    Sorry to hear . One if the main reasons i declined the drug .
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  • Posted

    An update on my "problem".  I had a call off the consultant I saw yesterday. He has had a word with the orthopaedic surgeon who wants to assess me but he thinks that I will need to have a nail inserted in my leg.  Seeing the x-ray yesterday and the tiny barely noticeable horizontal line on my femur it seems hardly enough to cause such a remedy.

    By the way, my t scores were:-

    December 2004  spine -3.1 and hip -1.2.  (Started Actonel)

    August 2005       spine -2.9 and hip -1.3 

    December 2007 spine -2.9 and hip -1.2

     Changed onto Alendronic Acid in 2010  but stopped in June 2012

    April 2014, I fell and broke my femur. 

    June 2014 spine -2.5 and hip 0.9.  

    July 2014 Was started back on AA

    August 2017 spine -2.7 and hip -1.1

    My scores were actually BETTER when I was off the drug and got worse again when I went back on it. 

    I'm not looking forward to having a nail in my other leg, especially as I have the blood problem that means that I will have to have a platelet transfusion for dental or invasive surgery etc.  I'm waiting for an appointment for the orthopaedic consultant and I'll know definitely whether I'll be having the operation or not, so more worrying for an already anxious person!

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    • Posted

      Your tscores were not even that bad which makes the whole business more tragic!

      My worst one is -4.3 lower spine. I have resisted even starting any of the drugs.

      I hope things improve for you in the future whether you go ahead with the operation or not. 

      So sorry for you!

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    • Posted

      That barely discernible line is like the crack in a plate or the handle of a cup.  The medics are trying to avoid a catastrophe, I think   Whether there's a less invasive solution I don't know, but I am sure your doctor would avoid surgery if s/he could  All the best. 

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  • Posted

    I have experienced similar situation only it was about 12 years ago and with pins in each femur to deal with a stress fracture in each caused by taking AA for a few years. Would be happy to talk about it if possible to exchange tel nos (+447803032731)
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  • Posted

    So sorry to hear what’s happened and thanks for your post.  I have MS and have broken one hip already as I have a hip T score of -3.3.  My back is fine.  I hate taking alendronic acid but I suppose it’s a case of weighing up the risks so I’ll persevere for another two years.  Very interested to hear about an alternative drug.  I’ve never heard of it.  Is it to become available in Britain?
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  • Posted

    Forgot to ask.  I’m trying to get zolendronic acid injection.  Assume risks are the same.  Noticed you didn’t mention that one.
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  • Posted

    I am very sorry to hear this. Thank you for posting and warning us.
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  • Posted

    Hi spindles this is my second AA tablet last week my back ached BUT as I had lifted a heavy bag I gave it another try this week and my fingers I could hardly hold a cup of tea it's so painful have used voltarol and eased slightly your predicament is dreadful I'm wondering where the pain will be next week if I take it again ??

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    • Posted

      My latest update about the small fracture in my right leg caused by the alendronic acid is that I saw the consultant a few weeks ago and he said that he couldn't see the fracture so it looks as if it's healed since stopping the tablets back in August last year.  I have been discharged but with an open appointment in case I need to see them again in the next six months and if I have any increasing pain in my thighs I am to go straight to A&E sooner rather than later.

      Unfortunately the blood problem that I mentioned in my previous post has been confirmed as Hypoplastic MDS which could turn into leukemia so I still have something else to worry about.   By the way, people taking AA should make sure they take them with plenty of water as one of the things I have been investigated for  and has been confirmed is gastritis and oesophagitis, possibly caused by the tablets.

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    • Posted

      I was interested in reading your post. I am coming off Alendronic as I have lost my eyebrows but also my hair is thinning.

      I noticed you mention being unable to hold a cup and this had recently happened to me. I nearly shouted when I shook hands with someone with a firm handshake as I experienced sharp pain. Now I wonder if this is yet a another side effect.

      Are we being given this drug as it is very cheap?

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