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Alendronic Acid

(25 Posts)
Marydoll Wed 28-Nov-18 10:04:10

mcem , I actually feel very fortunate that I have such a great team of medics looking after me, they do so much to keep me going and they all liaise with each other!
Just like you, the worst part of all my various treatment was those awful Alendronic Acid tablets, I was so glad to ditch them!! I fully expected lots of side effects from the infusion, (I often react badly to new medication) ,but just a felt bit rough the next day, it was painless and no chronic heartburn. I was so relieved.
I also have a lovely, sympathetic dentist, just a very grumpy dental hygienist!!!!!
The problem is the huge amounts of steroids I need to take for my lung conditions and RA (on a high dose at present), so it's a bit of a vicious circle.
I do hope your consultant can work things out for you. Sláinte!

Sparklefizz Wed 28-Nov-18 09:22:35

I have been warned off it by many people including 2 separate dentists who gave me case histories of people's later jaw necrosis, plus a couple of friends.

I already have a number of serious health problems apart from the osteoporosis (which was in itself caused by Tamoxifen for breast cancer), and don't want to add anything else, so I've decided to go down the natural route and have researched it thoroughly. I take high doses of Vit D3, Calcium, Magnesium, Boron and Vit K2. Marilyn Glenville's book is very helpful for the natural route. My consultant knows I like to take responsibility for my health and is ok with this.

So far, so good .....

Anja Wed 28-Nov-18 09:18:23

unusual thigh bone fractures

Only know because this happened to my sister.

Anja Wed 28-Nov-18 09:16:51

It has been linked to increase in bone fractures.

mcem Wed 28-Nov-18 09:09:44

My very grumpy dentist was very anti alendronic acid! Coincidentally I'd had a regular check up with no problems just before I was put on the medication and was able to say that when asked. However, a couple of months later, the whole side of a filled tooth just fell off.
When I went to see him he said he couldn't treat me and referred me to the excellent dental hospital who dealt with the problem very sympathetically and said Mr Grumpy Dentist was overreacting!

Yes dental health is important but manageable when you know the facts.

You've coped with so much more mary it makes my resentment of that half-hour wait for my cuppa seem so trivial!

Marydoll Wed 28-Nov-18 08:35:39

I was warned that I couldn't have any dental treatment just before and after the infusion, so I had to inform my dentist in case anything needed done.
It's all a bit of a minefield.

Sparklefizz Wed 28-Nov-18 08:09:30

Has anyone had problems with their teeth and/or jaw, which is one of the side effects apparently?

luluaugust Tue 27-Nov-18 22:35:40

I always fill the standing up time by doing the ironing, I save it up during the week and off I go at 7 in the morning. After 4 years it is a bit much. Difficult to know what are side effects and what is just the aches and pains of older age, it certainly seems to work. Just wondering if you coincidentally have a nasty bug auntieflo anyway hope you feel better soon.

Marydoll Tue 27-Nov-18 22:09:07

mcem I too have RA, but it was my respiratory consultant who was worried about the effect of so many steroids on my bones. He was right, I was first diagnosed at 37 with the hip of a ninety year woman. I then broke my back in two places. That was 26 years ago and been on and off Alendronic acid ever since.
I have a dexa scan annually now, due to all my medication.
If you get offered the infusion, go for it. I used to take my pill on a Sunday morning, as I was working. Initially, you had to wait for an hour standing up What a pain.☹️ Sometimes I would forget and make a cuppa.
I suppose every consultant is different, as is probably every health board's budget.
Good luck!

mcem Tue 27-Nov-18 21:19:13

Sapphire that's how I felt. I hated that lost half-hour. I was annoyed with myself as it seemed a bit feeble and out of proportion!
It was the consultant who suggested the infusion and made it sound like a simple choice. You've made me wonder marydoll.
I hadn't thought much about the implications as my DD has lidocaine infusions every 6-7 weeks and I thought an annual one would be easy to cope with!
Due to go for gp blood test soon to have inflammatory markers checked, so will ask then about dexa scan date and about infusions.

Blue45Sapphire Tue 27-Nov-18 20:33:26

Been taking it for seven years after breaking my shoulder, absolutely no side effects. Consultant prescribed it to be 'on the safe side', as my vitamin D level was so low, but have not had a dexa scan then or since. Perhaps I should ask whether I still need it. Take Adcal as well. Hate Wednesdays as I have to potter around for half an hour before I can have my morning tea!

Marydoll Tue 27-Nov-18 20:30:18

mcem, I had to try various alternatives before my consultant would consider the infusion. Then I had to be referred to the specialist bone mineral unit, as opposed to the Osteoporosis clinic. Blood tests were necessary to determine Vit D levels, before he would even consider me a suitable candidate.
The single annual infusion is more expensive than a year's supply of Alendronic Acid in tablet form.
It's roughly £50.83 compared to £283.74+ additional cost of delivery, as it has to be done in a hospital setting.

mcem Tue 27-Nov-18 18:43:55

Took it for 5 years (after a minor wrist factor) as instructed with no ill-effects. Dexa showed mild osteopenia.
Have been off for two years and am now awaiting dexa scan to see if I still need it. Unfortunately I did break my leg in June - would things have been even worse without the alendronic acid? Who knows?
Still take accrete d3 twice a day.
If so need to go back to it, I'll have the annual infusion as I hated that half-hour between the tablet and the first cuppa of the day!
Ps Predictive text fairy thinks it should be a death scan and electronic acid!

SueDonim Tue 27-Nov-18 17:36:21

No side effects here. I've been on it, or now a different version, for almost five years, after a double leg fracture. I hope I might be able to come off after my next scan.

Marydoll Tue 27-Nov-18 17:15:34

I had been on Alendronic acid for years way over the recommended time and then had a "holiday" from it. Then I got a new consultant, he put me back on it, but this time it made me very ill, he changed the type, it made me even more ill. I have never experienced headaches like it.
He decided on an annual infusion, but my vitamin D levels were not registering at all, so I had to have six weeks of huge doses of Vitamin D, in addition to my usual my Adcal, before I could have the infusion, as it leaches VitD from the bones.
I wish I had done that years ago. No side effects at all.
There are a number of threads about this on GN, if you do a search.

Auntieflo Tue 27-Nov-18 17:08:13

I have been asleep all afternoon, wrapped in my fleecy dressing gown, PJ’s and a blanket.
Thank you all for your replies. Yes, I did take it exactly as prescribed. In fact I usually get a cup of tea from DH early mornings, but yesterday I got up and pottered around for a good 30 mins, after swallowing the tablet, with a full glass of water. Then took our tea upstairs.
Maybe it is just a coincidence after all. I have an awful headache and my legs ache all down my shins. I haven’t even had a shower ?

MrsEggy Tue 27-Nov-18 17:05:05

I gave up after a couple of weeks because of side effects. When I saw the consultant we discussed country walking and he said that was better for bones than medication!

BlueBelle Tue 27-Nov-18 15:07:09

I can’t take it because of my oesophogus but have an annual infusion I personally don’t feel it’s doing anything but won’t have a new bone scan until next year so will know more then if not much change I ll stop and take my chances
I thought you were only supposed to be on Alendronic acid for a limited number of years, not for years and years

Kateykrunch Tue 27-Nov-18 15:05:05

I only tolerated it for a couple of weeks, but came off it due to the side effects I was encountering. It was discussed with my oncologist, who agreed with my decision and we will look again after my next dexa scan (I had good bone health but on post breast cancer meds that can/may/do affect bone health). I will have the infusion rather than tabs next time though.

annodomini Tue 27-Nov-18 14:46:55

I couldn't have it because I had quite bad reflux. The alternative was infusions of Zolendronic Acid but my current rheumatologist seems to have stopped these. Dexa scan showed only slight osteoporosis in left hip. Maybe osteopenia which is the lesser condition. I'm keeping on with Adcal.

Doodle Tue 27-Nov-18 14:37:57

I have taken alendronic acid for years with no side effects at all. I always take with a large glass of water and then sit upright for half an hour without eating anything as per the instructions. No laying down and taking the same day every week (well almost). Never had any effect on me at all.

humptydumpty Tue 27-Nov-18 13:24:04

A friend of mine took this who was doing research into bisphosphonates, and she said it is very important to be upright for the amount of time stated, I wonder if you failed to do this Auntieflo because if so I believe that can lead to digestive problems?

Luckygirl Tue 27-Nov-18 13:06:51

I couldn't take it - I have gastritis and it caused me pain.

I take the Ad-Cal, but have been recommended for desonumab injections. Hospital says they are good, GP thinks they make no difference! Hmmm.....1

shysal Tue 27-Nov-18 12:26:15

I take Alendronic Acid but am pleased to say that I have had no side effects at all. I assume that you followed the instructions to swallow with a full glass of water and to stay upright and take no food or medication for 30-60 minutes. I take before my morning walk of an hour and a quarter. I know a few people who take it and haven't heard them complain of symptoms like you describe. Perhaps you should try next week to see if they were connected or a coincidence.
Good luck!

Auntieflo Tue 27-Nov-18 12:11:47

I used to take this a few years ago, but stopped after reading the awful side effects that can occur. I continued with ADCAL D3, taking one each night and morning.
Just recently I had another DEXA scan, and Alendronic Acid was again suggested. I told my GP that I wasn’t happy, but she said she wanted me to take it. So I agreed.
The first dose should have been on Sunday morning, but as we were away, I took it yesterday, Monday morning, as prescribed.
Well last might I was up and down all night being very sick, from about 2am, but no diarrhoea. This morning I feel awful, and still nauseous.
I have made a hot ginger root drink, but the nausea has not gone away, and I feel sort of achey all over.
Has anyone suffered side effects from taking Alendronic Acid, and could it have come on several hours after taking the tablet?
Or is it just a bug that I have picked up?