Extreme Reaction to Alendronic Acid

Treatment and medication
1

I have taken Alendronic Acid for many years, but the side effects only hit me May this year.

I am in my sixties, but in April had been happily taking the tourist trail up Mt Vesuvius.

Suddenly I was getting excruciating pains in my knee, which no pain killers were doing anything to subdue I could hardly walk and 

​sleep was well nigh impossible.

The doctors immediate reaction was arthritis, the x-ray results came back saying 'wear and tear, commensurate with age' and I was sent off to a physiotherapist.

I did the exercises and still the symptoms continued to flair, to the extent that I was sometimes house bound as I was in so much pain.

Then about a month ago, having gone to bed pretty much OK I woke at 3am with incredible pains in both my hands, nowhere else just my hands.

Six hours later the pain was still bad enough that I didn't know what to do with myself, in desperation I phoned the Athritis Trust in tears, trying to find answers.

The pains finally subsided around noon, nine hours after they started, touch wood, they have not returned.

However, by the end of that week, the muscles in my back were in the sort of state where I was housebound again, had to be helped to get into or out of a chair where I would be screaming because the pain was so bad and once again with the continuing pain in my knee, sleep was well nigh impossible.

Having no thought other than arthritis I requested I be tested for Rheumatoid arthritis as I couldn't understand the flairs and the speed of everything that was happening to me.

The test came back clear for Rheumatoid and everything else the doctor could think of testing me for.

I went to see him again last Tuesday when we went through things, like me he was perplexed, but determined to try and find some answers he said he would spend time going through my notes and get back to me.

Last Thursday morning I got a call from the Surgery instructing me to stop taking Alendronic Acid.

I didn't take the one I should have taken on the Friday morning and over the following three days I have started to feel better, not yet fully well, but definitely better and after being so bad, for so long, better is a wonderful place to be.

This is all new territory to me, but I hope things will continue to improve.

i am due to speak to the doctor again tomorrow and hopefully he will have found out more about recovery times and if there is any danger of lasting damage.

Fingers crossed...

2

Oh dear, so sorry this has happened to you.  It has been recognized that AA should really only be taken for about two or three years now, to get most benefit with fewest risk of serious side effect, although the information is only starting to percolate through the medical system.   I'm glad you are feeling better.  Please. if you aren't already, make sure you are taking recommended calcium and D supplements, and add Vitamin K2 (not all the doctors know about this vitamin yet, but it is what helps calcium go to the bones) plus whatever appropriate exercise you can manage.  Alendronic acid likely stays in the bones forever.  If I were in your position I would probably refuse any alternative drug treatment at this time and be very careful to follow a natural regimen to help your bone health.  All the best.  Do let us know how you get on.

3

If the Alendronic Acid stays in my bones for ever, does that mean it will continue to 'cripple' me, or will it's effects hopefully diminish over time?

I need to know as much as possible before I talk to the GP again tomorrow, as I feel this is all new to him as well.

I will certainly mention vitamin K2 during our conversation.

As for exercise, I was fine until all this started in Mid May, but unless things improve quiet a bit from the state I am in now, I don't know what I will be able to manage.

if you know of any medical articles or papers on the subject I would be happy to give the references to my doctor, so he could check them out, if he hasn't already come across them.

Many thanks.

4

You know, that's a really good question.  I'll private message a link.  As far as I've been able to find out the effects of the drug may last for a few months as it is cleared out of the system.  But what is essentially locked up in the bone matrix should not cause further issues such as you described.  Whether they continue to affect the bone itself I don't know if anyone has researched that yet. But the article I'm sending seems pretty upbeat, and it is from a source that disapproves of the meds, so I'm sure if they could find issues they would! 

5

Thank you so much for your help, I look forward to checking out the link.

6

Sorry to hear about your suffering from this drug . Was diagnosed after a scan last year but refused the AA after studying it's background and side effects. I use several supplements and K2-7 is one if them along with calcium magnesium and vitd.. I approached the hospital regarding the refusal of the course of AA and they spoke with me and offered another scan after 2 years which will be next August . My lifestyle exercise and diet along with the added supps will be scrutinised with my next set of results. For what it's worth I was completely unaware of any problems and an oversight from the hospital as I broke my ankle whilst out running but because of my age 54 they gave me the scan. Finding out it's 60% hereditary came as a shock my mother has only just been diagnosed at the age of 79 which was only a month before mine. She had unfortunately started the course but after I spike with her she decided against continuing it but it does remain in your system for up to 5 years in led to believe . She already has arthritis and lupus and is on long term steroid so should not have been asked to take AA with the steroid. Quite worrying oversight but hey we are guinea pigs for the wealthy pharmaceutical companies. My health is extremely good and getting healthier I train 7 days a week and teach classes and spinning . This if anyrhi g has inspired me to look in depth at long term health not only for myself but others who have the misfortune. I hope since the cessation of the drug your pain lessens and u remain as active as possible. It's far too simplistic to prescribe drugs to cure an age old problem . Diets over the last 100 years or so have led to untold suffering for many. If you have time to study read up on healthy bones etc and acid alkaline body balance . I train extremely hard eat fantastic and pop several supplements if I help one person that makes me a happy person .

7

Hi all, thanks for the information.  I was diagnosed last year at age 60 (it does run in my family) but am trying to make lifestyle changes as well.  I started AA but thought I had a reaction so the gp gave me another brand that I can take once a month -- however I haven't started this new regime yet.  I really appreciate your notes on all of this  -- you've given me some motivation to up my exercise routine. thanks karen

8

I am 71 and was diagnosed with osteoporosis in 2005 and was put onto AA "for life".  I was on it for seven years then stopped it in 2012 to have a two years "holiday".  In the holiday in 2014 I slipped in the garden and broke my femur (so much for the AA giving bone protection) During the time I was on it I had been having aching in my thighs and muscle weakness for some time. If I picked up something even slightly heavy my leg would just give way.  I was put straight back on to AA and am due for another "holiday as it is just over three years since I started again.  Like the first time I took it I have started having the muscle weakness and aches in my thighs.   I have had several scans and it has been found that I have at least two compressed fractures of my spine, all while on AA.  The consultant would like me to go onto an injection that lasts six months but I am very reluctant as I have several allergies and I am worried that should I have a reaction to the injection I can't stop it once it's in.   I decided, without seeing a doctor, to stop taking the tablets and the thing I have noticed is that my sugar levels (I am diabetic) have been much better in the the three weeks that I haven't been taking the AA, whether this is coincidence or not I don't know but if it is caused by the tablets then that's another good reason not to take them. 

9

It seems to me from what everyone is saying, that we need to listen to our bodies more, but we tend to have our slight anxieties overwhelmed by the firm beliefs of the medical profession.

Months ago, when discussing my ‘problems’ I had mentioned at different times to different neighbours, that the only connection I could see to any of the flair ups was that they seemed to happen on a Friday/Saturday.

We talked it through, but could think of nothing that made those days different to the other days of the week.

The fact I took the Alendronic Acid on a Friday morning never entered my head, why should it, I had been taking it for years with no ‘problems ‘ or at least none I could see or feel.

As for exercise, other than the normal walking etc., I am very wary at the moment.

I just feel I want my body to get over the effects of the drug as much as possible, before I start pushing it to do more.

Before I stopped taking AA I was doing all the things required of me by the Physiotherapist, when the pain wasn’t so bad that I could hardly move and felt those exercises did help a little.

I stopped taking AA and it is a different world, I sleep at night, I don’t feel  by the end of walking a 100yds that I can’t go any further because the pain is so great, I don’t crawl up the stairs on my hands and knees, I don’t spend the evening with an ice pack on my knee.

I still walk slowly and the knee still aches, but not in the same way at all.

Perhaps if things stay the same in a week or so I will feel brave enough to go back to some of the exercises the Physiotherapist had me doing, but for now I’m taking things slowly.

10

Could you please send me the info as well 

11

hi.
I am a 66year old lady and have been taking alendronic acid for 5 years, in this time have had some dizziness and my vision not always clear never putting it down to the meds,but in the last few weeks I have suffered with headaches and last week had a awful experience in the car my legs from my feet to my knees started to get tight and shake then my hands and arms did the same this lasted for about half hour in this time I was taken to AE department. had alot of tests and found I had too much calcium in my blood. my GP has taken me of the alendronic acid for a month to see how I feel and if the calcium goes down in my blood.
Does anyone else know of this problem.
many thanks