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More about alendronic acid

Posted , 14 users are following.

EileenH
EileenH

Hi all,

Rather than repeat things I have posted before - which anyway would miss the contributions from others - I thought I'd put this under a new heading so you can look for yourselves.

If you type \"alendonic acid side effects\" into the search box at the top of the page and then choose the \"arthritic/bone/muscle\" selection which says there are 12 hits (I think) you will find all the posts we've had mentioning alendronic acid and problems with it. I have discussed the reasons why doctors are so keen we should take it (in my opinion, pressure from big pharma) and several people have reported having muscle and joint pain when taking it which has resolved once they stopped taking it.

I feel the bottom line has to be that, whatever the average GP (or rheumatologist) says, it has become a controversial drug which can be of use in certain circumstances (established osteoporosis) but which has been introduced as something which can be used to prevent something without any thought of the wider picture when used in very large numbers of people over a long period of time. Whilst uncomplicated and proven osteoporosis may well be a field where it should be used, in the presence of certain other diseases the situation can be very different. There is a parallel situation with statins. There is no doubt that very high cholesterol levels pose a risk - but the widespread use of statins to lower cholesterol levels that are only slightly raised may also have other effects where specific concommitant diseases are present. They too may cause muscle problems and some have been associated with the subsequent appearance of PMR.

As far as I know, there are no long term, large scale trials looking for interactions with other ailments - and whilst the clinical trials usually pick up the most serious side-effects, the numbers are relatively small. There is a scheme in place for reporting what are called \"adverse events\" after a drug has been approved but it is well known that 1) doctors don't go to the lengths of filling in the reports and sending them in and 2) all too often the patient is not taken seriously when they say \"this medicine is making me ill\". Just think how difficult some of us have found it to find anyone to take them seriously about PMR!

Enjoy your reading ladies (and gents if that applies) - I hope it answers a few of the questions that have surfaced over the last few days. If not - ask again and I'll go away and look for specifics :lol:

EileenH

1 like, 103 replies

103 Replies

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  • mrs_k
    mrs_k

    Posted

    EileenH

    [color=red:ee49b7f50f]There is a scheme in place for reporting what are called \"adverse events\" after a drug has been approved but it is well known that 1) doctors don't go to the lengths of filling in the reports and sending them in and 2) all too often the patient is not taken seriously when they say \"this medicine is making me ill\"[/color:ee49b7f50f]

    For people in the UK, you ask your Chemist for a card to report side effects on drugs its called [b:ee49b7f50f]The Yellow Card Scheme[/b:ee49b7f50f].

    Looking at that Yellow I can't see it So here it is [b:ee49b7f50f]The Yellow Card Scheme[/b:ee49b7f50f]

    I filled in three.

    Google it and read all about it - if patients all filled these cards in, then something might be done.[u:ee49b7f50f][/u:ee49b7f50f][b:ee49b7f50f][/b:ee49b7f50f]

  • EileenH
    EileenH

    Posted

    Thanks MrsK - I'd forgotten about that never having filled one in. I'd certainly encourage anyone who had had an \"adverse event\" to fill one in. Trouble is, so many patients don't realise what was going on.

    EileenH

  • fiftiesgirl
    fiftiesgirl

    Posted

    Have just spent the last ten mins or so reading all those back posts as suggested having followed the link through search experience..... now seriously concerned :roll:

    I have been leaving it at least 45 mins after taking the alendronic acid before drinking tea and then a while before having breakfast. Seems to sit for quite a while........ then on the past two Sundays ( which is when I take it) have had two unpleasant incidents which I did not relate to this drug.... perhaps itis , who knows? When I went to bed and lay down, pains began in my upper arm ( right hand side only) and got worse and then moved into my upper chest, right hand side only and moved through to my right lower shoulder blade...... horrible pain and lasted about half an hour and nothing would ease it.... thought I was having a heart attack the first time it happened :roll: Do not suffer from indigestion so know it wasn't that... when it happened again last Sunday realised it was something I was taking......... AND although on 20mg prednisolone having awful problems with pain in lower hips, groins and in both legs down to knees..... connected? Thought it was the PMR not being controlled?

    Seeing doc a week Monday to have results of bloods taken today so will absolutely talk to her about this...... NOT happy taking this drug given that I have not yet had my first DEXA scan so how on earth did the rheumy have any idea that I NEEDED to take it..... not a happy bunny. Will continue till I see him end of March but after that point there will have to be some pretty hard evidence for me to continue. Think I would rather run the risk.... but have a fairly high intake of calcium because of the food I eat.... because of all the walking and exercise I used to take prior to PMR would be very surprised if I had osteoporosis but I might stand corrected.

    Thought the PMR was something I was going to have to come to terms with and now to find out this alendronic acid is something worse than the steroids has come somewhat as a shock.

    Eileen H and you other wonderful ladies long into your journeys and now 'educated' into the drugs etc make me more than thankful I have found this site.

    I just need to learn what is 'normal' for my PMR and what is not so I know when something else I am taking is giving me 'side effects' so I can flag this. :roll:

  • gillybee
    gillybee

    Posted

    Yes, this is very interesting.

    I too am taking the alendronic acid tablet once a week (I take mine on a Saturday morning). It has never occurred to me that there would be nasty side effects. Being the trusting person that I am, I just thought that taking it would keep check on my bone density.

    Wondering now if this strange morning and evening leg pain that I am experiencing could be a side effect connected to the alendronic acid tab.

    As I am now also thinking that the pain started about the same time as I started taking the tab.

    I have always thought that the pain was somehow different to the PMR pain too.

    Hmmm.. :?

    Gilly.

  • EileenH
    EileenH

    Posted

    50sgirl - I was going to send a private message but I don't know if you know how to use them!

    Have you googled alendronic acid side effects and looked at the patient experience page about it? One of the symptoms they quote that requires you to stop taking it immediately and to inform your doctor straight away is chest pain of any sort - in fact, they even say go to A&E if you have chest pain when taking AA. I don't want to upset you but there is no need to worry about stopping taking the AA - there is need to worry about those sorts of symptoms. Try and see or speak to your GP if you can before taking another tablet, if that's not an option, ask a pharmacist for their opinion.

    You are quite right to say you need to \"know your own PMR\" but anything really as unpleasant and scary as your chest pain must have been doesn't need to be classified under \"must be the PMR\". And this is the sort of thing that should be reported on the \"adverse events\" scheme as unless everyone who experiences something like this tells the authorities it would remain as a rare occurrence on the basis of the clinical trials.

    As for the risk of osteoporosis - unless a dexa scan has shown some evidence it's a minor problem at present. I've taken steroids for a year and a half now and a rheumatologist is quite happy for me to continue skiing - hardly a low risk pastime! :lol: :roll:

    Hope I haven't spoilt your evening. Have a glass of wine instead!

    EileenH

    • mollie25530
      mollie25530 EileenH

      Posted

      The thing about steriods is that they do cause osteoporsis, as someone who took them for years for lupus, after menopause my osteoporsis has become a huge issue, while before I did not notice it. Now I have had two compression fractures and 3 rib fractures in 2 years and my dcotors want me to go on forteo which I am afraid off. I am currently tapering off the steriods, and already struggling and the idea of side effects form fortoe adding to this, is a bit overwhelming. I wish I had gotten of the steriods years ago, or did more to support my bones. I only 50 and my dexa showed I am -3.5 on my hip and spine below the mean.  I think I will have ot go on forteo in order to get some bone back.
    • EileenH
      EileenH mollie25530

      Posted

      This is a very old thread so you may not get much response. I don't think Forteo is used a great deal in the UK in PMR (which is this forum) either so that will also reduce responses here. However, its side effects sound much less scary than the alendronic acid most of us are offered as a so-called preventative. I refused and my bone density is the same now as it was before pred. 

      And remember, not everyone gets the side effects. It is always worth trying and seeing how you get on - you may be fine.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey mollie25530

      Posted

      Mollie, my elderly aunt was on a bisphosphonate bone protection drugs for years, and following each DEXA scan was told that everything was fine.  However, she then suffered a spinal fracture, saw a consultant privately and was prescribed Forteo injections.  I believe the treatment was for two years, she didn't suffer any side effects and her latest results show a great improvement.
    • lodgerUK_NE
      lodgerUK_NE mollie25530

      Posted

      mollie

      You wrote"after menopause my osteoporsis has become a huge issue",

      Where you put on HRT and if so are you still on it.   HRT longterm can also help.   But I don't know anything about Forteo.

      I would google 'Denosumab'.

    • mollie25530
      mollie25530 MrsO-UK_Surrey

      Posted

      Thank you for responding, can you tell me how old your aunt was when she started forteo, and how much benefit she receiived, how much more bone.  My osteo is severe, and I tire easily and get hurt from lifting little weight, it scares me, I know I need to do something, would your aunt be willing to talk about her experience, I am very afaird of all the posts I have seen form people going on and on about Forteo and the side effects.
    • mollie25530
      mollie25530

      Posted

      No I was not, I wanted to but because I suffered from an pulmnary emolism during a surgey when 30, my doctor said he thought too risky. Now my bones are see through on rxay and I wonder which is worse, a risk, or the real issue of how bad my bones are.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey mollie25530

      Posted

      Mollie, my aunt was in her early 80s when she started Forteo, and the consultant had to seek special authority to prescribe it due to its exhorbitant cost.  I'm not sure exactly "how much more bone" she has post-treatment but she has been told that she doesn't need any further bone thickening meds.  Unfortunately she isn't an internet user otherwise I'm sure she would be only too happy to talk to you.

      Are you in contact with the National Osteoporosis Society.  They publish quarterly brochures about latest research into osteoporosis and have a Helpline 0845 450 0230.

    • EileenH
      EileenH mollie25530

      Posted

      Don't confuse Forteo with alendronic acid - they are NOT the same drug at all. Forteo is a man-made version of one of the hormones our body makes naturally, in just the same way the contraceptive pill or thyroid medicine are man-made versions of naturally occuring substances. It doesn't matter what drug you take - they have side effects and you will always find people with scare stories. That applies to ibuprofen and paracetamol too.

      As far as I know, Forteo is one of the very few drugs that they have that actively BUILDS new bone and is used for people with very advanced osteoporosis to sort it out quite quickly. It is usually only used for a couple of years to avoid the long term possible side effects. If your osteo is severe you are at risk of developing spontaneous fractures of the bones in your spine - and that is very very painful and disabling. 

      In as far as it is possible for any of us to say from the other side of a forum, the risk of the drug is definitely less than the risk of the osteoporosis effects on you in the longer term. Doctors must weigh up the benefits and disadvantages of any medication before using it. That also applies for the alendronic acid that was being discussed on this thread - using it for patients with reduced bone density should avoid them getting to the stage you are at. That's why it is used at all. I have nothing against it being used there when there is a need, it is when they are used with no proven need I have a problem with it.

       I take calcium and vit D - to prevent me getting to the stage of needing anything else, including alendronic acid. I am lucky, it has been enough. You are way past that stage - and that is why they are saying they will use Forteo. You don't get Forteo as first line treatment, you get it much later on, when there is a real risk of some very nasty results of osteoporosis happening. Preventative medication of any sort is no use to you now - you need the big guns and they will keep a close eye on you while it is being used. 

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      Over 10 years ago, Forteo cost nearly £300/month, 12 times the cost of alendronic acid. 

      Are you in the UK Mollie? If you are it does show how concerned they are about your osteoporosis.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, Forteo must be worth its weight in gold, well as far as my aunt is concerned anyway - after two years on the injections, she is back at the gym 3 x weekly, followed by a swim, and sequence dancing 3 x weekly.  Not bad for an almost-90 year old!

       

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      A definite advert for the stuff! That is way ahead of me even pre-PMR!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Although, she's always danced together with my Uncle when he was alive, she didn't start the gym/swimming until she was in her 60's - too late for me to even think about catching up - still time for you though!smile 
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      The research into aging unit in Innsbruck would tell you you are never to  old!!!! I can't dance to save my life except with someone who is good (OH has 3 left feet) but I did enjoy the gym and the pool when we were in Durham. There is little demand here - everyone who wants to exercise is climbing mountains and rocks and frozen waterfalls...
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Unfortunately, there aren't any mountains, rocks or frozen waterfalls around here - I guess I'll just have to stick to walking!lol
    • mollie25530
      mollie25530 EileenH

      Posted

      I have had fractures due to long term steriod induced osteoporis, my dexa was -3.5 and I am 50, had early menopause at 48, and really feel the difference in my bones. At first I thought it was my autoimmune diseases, but it is more weakness and getting hurt easy, and being sore if I do very much with my muscles at all. I have read studies that for steriod induced osteo they found that they more than doubled their bone mass in 18 months, so I am thinking this is my only real choice, though I fear side effects.  I would have to take fosomx after or prolia ot sustain gains.
    • EileenH
      EileenH mollie25530

      Posted

      I think at present you don't have any choice - because the fosomax (alendronic acid) and prolia are not enough to reverse things now they are so advanced. But I think that you would find that the side effects of NOT taking it will be worse than any you may experience being given it. You have a long life ahead of you and without sorting out the osteoporosis it may not be very pleasant.
    • mollie25530
      mollie25530 EileenH

      Posted

      thanks, I have three chidlren and worry I won't be here to see then marry or have children, and I am so scared. I want to excercise but I don't want to hurt myself, walking seems like the safest?  I am afraid of foreto but my endo seems to think it is a great drug.
    • EileenH
      EileenH mollie25530

      Posted

      If you don't use the forteo then you won't be able to do anything eventually, not even walk. Once osteoporosis gets to a really extreme stage the bones, especially the bones in your spine, will crack without you even exercising.

      The endo is suggesting this because of the stage you have got to - if the others were an option that would probably be what he suggested. If you try the forteo you have far less to be scared of than if you refuse to take it. 

    • mollie25530
      mollie25530 EileenH

      Posted

      Yes,  I get that, so that is why I am so weak, they do not tell me that, but the last two years, I have not been able to do what I used to at all, muscle get injured over anything, and fractures have happened easily.  They act like forteo could poss reverse even severe, or take me to osteopenia, that seems unreal.  Have you know any one on Forteo? Like I have heard the side effects are terrible from some on forums and then other seem to have only a few...? I have read about people returning to exercise and do whatthey used too on forteo, even 6 months into treatment, so I am tyring to have hope.
    • mollie25530
      mollie25530 MrsO-UK_Surrey

      Posted

      Can I ask how was she before the forteo, unable to do much? weak? I have severe osteo and fatigue easlily and get injured way to easy and have not endurance, which scares me.  I am starting the forteo this week, and just wonder how bad she was before she started?
    • EileenH
      EileenH mollie25530

      Posted

      That is exactly what it has the ability to do. That is why it is being suggested. The way it works is to BUILD bone, it will reverse the osteoporosis.

      Everyone is different, everyone reacts differently - and I'm sure you can remember when you were pregnant. Do you not remember the other women who only had the scare stories to tell? Did it stop you having another baby? It didn't, did it? 

      MrsO's aunt, at nearly 90 and after fractured vertebrae, returned to exercising. You are just a baby in comparison - once your bones are healthier you will be able to do things again. But YOU are the only person who can do anything about it - I can tell you all I like, if you don't say yes to your doctor things will only get worse than they are now. You will be stuck in a wheelchair at best, in bed at worst. You won't even be able to cuddle grandchildren. Trying Forteo means that you should be able to do those things. There may be a few side effects - but until you try it you cannot know if you will suffer any. You may have none, or just the odd minor problem. Without the future doesn't really look very good does it?

    • mollie25530
      mollie25530 EileenH

      Posted

      Thank you for being up front enough to say these words to me, I need to hear them, and you are right, I am don't know you, but I have listened to many people and for some reason your frank words have hit a cord and made me see I must do this now.  No it did not stop me from having a baby, you are right, thank you for caring about a stranger enough to speak your mind and try to help.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey mollie25530

      Posted

      Mollie, from the description of how you feel, it doesn't sound as though my aunt was as bad as you until she had the sudden spinal fracture.  And if she wasn't as bad as you and was given Forteo, then all the more reason, and need, for you to take it, and the sooner the better so that you can enjoy quality of life and enjoy your family without the worry.
    • mollie25530
      mollie25530 MrsO-UK_Surrey

      Posted

      Thanks, yes, I have had a compression fracture, so that adds to things. I have decided to taje the forteo. I am thankful for the responses you have shared here!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey mollie25530

      Posted

      Mollie, good luck and we hope the next time we hear from you it will be to let us know how much better you are feeling!
    • EileenH
      EileenH mollie25530

      Posted

      Good luck - and do come back and tell us how you get on.
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