More about alendronic acid

Posted , 14 users are following.

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

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  • Posted

    50sgirl - don't hope for too much just from missing one dose of the AA - I'm not sure how long it takes for the effects to work out of the system, particularly since there is evidence of its presence in bone 10 years after taking it! One would hope that its other effects don't last too long!

    Have a nice weekend - I'm also recovering from an excess of daughters and a grandson though the main effect there is MOUNTAINS of washing. So I'm going to the real mountain to ski tomorrow morning since we are promised cloudless skies and wonderful sun for Saturday and Sunday morning at least! 8) :lol: Should have gone this morning but bed was too attractive after the last 10 days - I know it would have made me feel better than I did today! :wink:

    EileenH

  • Posted

    Hello fifties girl

    I have just been looking on a website called askapatient.com Fosamax side effects and patients comments 962 postings on there !!!!!!!!!( havent read them all but a lot of people have had problems I put how long does Alecdronic Acid stay in your body and this was a website that came up

    I have been trying to think of things that have been different to my first bout of PMR when I didnt take it and I know I have had more headaches Rib pain and wrist weakness and I didnt get this last time These seem more of the milder side effects with this I normally am not a person who has gastric problems so probably lucky there Im not sure if this a mixed American UK site or not but it does seem there are lots of court cases on the go in the USA

    I shall have another look at it again or I will be up all night trying to read all those posts

    Best wishes

    Mrs G

  • Posted

    Just adding a little bit.

    [b:851122e9fa]USA[/b:851122e9fa]

    The FDA (Food and Drugs Administration), which approves drugs in the U.S., has issued a warning on the labels of the drugs.

    Sandra Kweder, deputy director of New Drugs at the FDA, said: ‘FDA is warning again about the possible risk of an uncommon form of fracture in patients who take bisphosphonates to treat or prevent osteoporosis.

    [b:851122e9fa]UK[/b:851122e9fa]

    A spokesman for the MHRA (Medicines and Healthcare products Regulatory Agency) said it was carrying out a review into the possible link. These are the people who deal with the Yellow Cards -[b:851122e9fa] link given by Moderator in a posting above this one. [/b:851122e9fa]

    [b:851122e9fa]National Osteoporosis Society[/b:851122e9fa], Claire Bowring, medical policy officer at the National Osteoporosis Society, said: ‘It is certainly a risk people taking the drugs should be aware of. There is more information to be had from this Society as well.

    Mrs O

    [quote:851122e9fa](total hysterectomy over 35 years ago - possibly too early for HRT to be prescribed?)[/quote:851122e9fa]

    I had my hysterectomy over 41 years ago - aged 32. Premarin (made from pregnant mare's urine) was being tested then and because some of the trials where being held at Durham University Medical (now part of the Newcastle University Centre of Excellence) and I was young, I was given it - I still take 0.625mg each day. No problems whatsoever.

    Trouble with me is that I am not good at taking tablets, have had problems with anaesthetics, analeptic shock caused by penicillin. So I avoid everything I possibly can.

    But I have gone back to Cod Liver Oil, with 420mg Omega 3 rich Fish Oil, Vit A, D and C. Why I have done this? I discovered my Rheumy takes them. Good enough for him - good enough for me.

  • Posted

    [color=red:32ae328a4f]Mrs.K[/color:32ae328a4f] wrote

    [quote:32ae328a4f]I discovered my Rheumy takes them. Good enough for him - good enough for me. [/quote:32ae328a4f]

    Interesting. A few years ago I accompanied a friend to a session at our little local hospital run for pre hip reaplacement patients. I t was excellent and the people running it were so helpful, reassuring and informative. I spoke to one of the nurses afterwards and asked her opinion of glucosamine which I was taking ( and still take). Her answer was yes, and take C L O with it.

  • Posted

    Re the glucosamine story - there has just been a review of studies published which says it's no use. I've used it for years on and off and whatever the official view is, I had less pain in my knees after using it. So does my sister in law - and someone more sceptical that her you'd be hard put to find! I think it is another of the \"suck it and see\" things - even if only 25% of trialists found it helped, that is still a lot of people within the entire population and you might be one of them.

    As a scientist I do look hard at anything I use - whether it is a medication (OTC or PO) or my ordinary everyday shopping. If I like it, if it helps, if I feel better, I'll use it again. All the ads in the world won't persuade me to buy something more than once if I wasn't convinced. :roll: Maybe it's our generation. :lol:

    I'd like to take the cod liver oil stuff - what's it taste like, MrsK? Whose version if it tastes OK?

    love to you all from a wonderfully sunny South Tirol 8) :lol:

    EileenH

  • Posted

    Hello

    I have taken Glucosomine for many years and i feel it helps I stopped it once when I had flu and didnt take it for a month and I felt the difference

    A lady I knew when I joined a health club about 12 years ago aged 70 looked supremely fit swam daily and did all the aerobics classes yoga etc and put us then 50 year olds to shame I was talking to her one day in the pool and she said she had a period of 18 months when she could hardly move her shoulder even lifting a kettle was too much She had every treatment known to man injections physio tablets and despaired and she was reccommended Glucosomine and after a month her shoulder got better and better She had studuied it quite a bit and said American athletes had taken it for years for joint repair

    I take CLO but in tablet form and also Omega 3 fish oils and garlic tablets so I rattle !!

    Mrs G

  • Posted

    [color=red:ea271b53ca]Eileen[/color:ea271b53ca] The CLO I use is Healthspan's St. Clement 1000mg.. I take 2 a day. There is no after taste.

    Glucosamine is also recommended by some vets for arthritic dogs and owners have reported marked improvement.

  • Posted

    I'm wondering what the statistics are for bad reactions to alendronic acid, Fosamax, etc? i.e. how many people actually get the disintegrating jaw bone, fractured bones, ulcers, etc, while using these drugs.

    Not sure it matters--I don't plan to lend my body to Big Pharma for their science experiments unless I absolutely have to!

  • Posted

    Hello

    As ive said in the last few days I never took much notice of taking Alendronic Acid /Fosamax as it was only one tablet once a week and only really stopped taking it as it was an inconvenience but after reading the side effects in the last few days !!!!!!!!!!!!!

    If you google Prednisolone side effects or forums you dont get too much but when you do AA/Fosamax it goes on and on and of course with you in the USA you have court cases taking place or going to The lady who had Osteonocrosis of the jaw lost her case this week though but Im sure more will take place

    If I ever have osteoporosis I shall want to try something else

    Mrs G

  • Posted

    Freesia - at present the numbers are quite low for the necrotic jaw problem, for example. The problem is more that the figures presented in the pack insert are based on the clinical trials which are usually carried out on maybe a couple of thousand patients (or less) over a period of a few years. It is only after the drug is approved that very large numbers of patients with various other diseases take the stuff over a long period of time - which is the particular problem with Fosamax and friends. The gastric problems are not uncommon.

    The FDA probably will quote some figures but how meaningful they are I'm not sure. They have, however, now said clearly that bisphosphonates shouldn't be given for more than 5 years at a time. The drug company started by getting their drug approved for patients with osteoporosis. As far as I'm concerned that's fine - there is an existing problem that can benefit from being dealt with. However, they then went on to suggest that all patients who are osteopeneic (not yet osteoporitic but with a lower than normal bone density) should also be put on this drug. This immediately increased their sales big time! The objection some of us have is that doctors in the UK sometimes have put patients onto Fosamax (or the generic version) as a precaution - with no evidence that they need it on the basis of a bone scan.

    In addition, patients are now turning up with this strange thigh bone fracture which pretty much only happens in people taking bisphosphonates over longer periods - although it can happen after as little as a year. Hence the 5-year limit - but many docs are apparently not aware of this.

    This discussion started because one lady responded well to steroids at first but after taking the Fosamax developed muscle and joint pain again which hasn't responded as well to a higher dose of pred. Muscle and joint pain is a common side-effect of Fosamax (up to 1 in 10) though not usually severe - but that claim was made on the basis of the clinical trials where there almost certainly weren't many (or even any) PMR sufferers amongst the cohort. The waters were muddied by the rheumatologist giving her steroids and bone protection at the same time - as I see it, give steroids, confirm this is probably PMR, do a dexa scan and give bone protection IF IT IS INDICATED.

    EileenH

  • Posted

    Thanks, EileenH.

    Your comments make it so clear what the problems are with bisphosponates, especially as they can affect those with pmr!

    I feel sorry for that woman who took them and ended up with yet more muscle pain which couldn't be helped with even more steroids. That is tragic. And that strange thigh bone fracture...it's just too weird.

    I don't know what I will do if my bone dexa scan shows osteoporosis. With my sensitive \"gullet\" I don't think I would do well at all with bisphosphonates--never mind the other horrible possibilities. I did try taking strontium from the health food store on my own for a while, but stopped. My doctors have no statistics or knowledge about using it, so it seemed better not to take a chance with an unknown.

    freesia

  • Posted

    Good morning one and all......... have been having a computer free time as shoulders bothering me yesterday :roll:

    Was wonderful to wake up yesterday and NOT take the AA!!!! I do realise it will take time for me to begin to see any cessation of my symptoms to confirm they are associated with the AA not my PMR but I have everything crossed! Is going to be a very interesting appt with my doc next week :lol: :lol:

    Spent some time on Sat following up the links I was given and it has all just confirmed I have made the RIGHT decision, for the time being, to stop taking AA as it has 'muddied' the waters ( as Eileen H so rightly says) re my symptoms and I don't know what is what at the mo.

    Don't want to have to go up with my steroids from 20mg to be completely painfree/symptom free if it has been the AA causing what I have been experiencing.

    When I see the rheumy at end of March I am certainly not going to mince my words with him and will tell him in no uncertain terms what I think about him prescribing this without reference to me ( my body) and having no bench mark to start with.....

    Going to look at the RA warrior site too later on today when I have managed to potter and do some jobs in the house and am actually going to get in the car and see if I can do a small shop for some needed food items :D

    Have a good one everyone :D

  • Posted

    An add on here....... have just read the comments about Glucosamine and Cod Liver Oil....... I had been taking Glucosamine and Cod Liver Oil for about four years after I had been diagnosed with osteoarthritis in my right hip....... stopped taking both when pain levels were elevated and continued to get worse..... this was the PMR, unbeknownst to me and my doc during that time :roll:

    Am going to start taking a good Omega 3 fish oil which will do no harm and will probably benefit me but unsure about restarting the Glucosamine. When I saw my nutritionist friend she did not mention either as would rather people got all they needed from their food rather than supplements but does advocate supplements when needed.

    I used a Higher Nature Omega 3 which has been screened for all the 'nasties' to ensure it is pure...... do be careful ladies what you buy with regards to Cod Liver Oil and ensure it has been screened to ensure it is of a high standard. smile

  • Posted

    Good morning fifties girl, you're another one up bright (I hope) and early!

    Good luck with your plans for today! It does give one a feeling of achievment when one manages to do some of these everyday things successfully!

    I used to have a lot of problems with shoulder pain using the computer until I changed to a laptop, when I rarely seem to get problems unless I am doing an awful lot on it.

    Re glucosamine: our doctor's view was that it did no harm and a lot of his patients used it. Wasn't going to commit himself further. My husband started on it for an arthritic knee, swore at first it helped - but I notice has quietly stopped taking it so ????? Of course, there's always the placebo effect. It sometimes seems better to do [u:c3ff81e517]something[/u:c3ff81e517] than nothing at all and to be more in command of ones own life. I know I hate feeling that I'm at other people's mercy so to speak - can't see me having a very peaceful old age at that rate :roll:

    Have a good day, [color=green:c3ff81e517]Green Granny[/color:c3ff81e517]

  • Posted

    Hello Fifties Girl

    Someone put on here ages ago to help with morning stiffness a long hot shower or turning an electric blanket on ith morning when you wake up

    I personally love my wheat bag It is quite old now and could do with a new cover ( all the new ones I see seem to have lavender in as well and I dont like it ) and i drape it around my shoulders I also made a lot of use of hot water bottles as I do feel if I am warm I am better

    I have noticed that Lidl (from Thursday ) have Moor mud pillows, back supports and neck pillows whiich you warm the same as a wheat bag Id never heard of them but particuarly the shoulder and neck one looks a bit more moveable in than a wheat bag

    Hope everyone has a good day of to my muscle exercise class this morning and physio for my knee this afternoon Very exciting !! Make up for the three lunches I am out for this week !!

    Mrs G

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