Alendronic acid

Yes. My mum has osteoporosis and has to go to the day ward once a year for a drip infusion of alendronic acid. She hasn’t had a bone scan for about three years and as she’s elderly and a fall risk, I asked our GP about one. I was told it shouldn’t be a problem and to expect an appointment in due course - however long that will be. I don’t think you should be afraid to ask - osteoporosis has a knock on effect on other things so it’s not just a case of long term medication, it needs monitoring.

I have missed three scans and two infusions.
I had an infusion in November 2021 , without the usual scan prior to it.

Not exactly unexpected, given the fact that were a fighting a pandemic.

I had a scan during lockdown 2020 and was told I d have an infusion again this year as I ve had a 2 year break so I m waiting to hear I did check and they said I should get one soon but there’s a bit of a backlog
You are suppose to have breaks from it so 7 years is quite a long time My friends new doctor was a bit surprised she had been on it quite a number of years without a break and promptly took her off it

I have been on and off it, in various forms for thirty years.
I will also be having a break.

I started taking AA roughly 5yrs ago when a Dexa Scan showed I had osteoporosis. Months later my dentist and I were concerned about why my gums were receding. He double checked which meds. I was taking. Upon hearing I was taking AA he told me to stop immediately as receding gums was one of the side effects of taking AA. A bone scan showed the bones in my mouth were healthy and strong.
My gums have stopped receding since I changed to Accrete D3.

This may not be the case for everyone and I may have been unlucky to have had this reaction.

Marydoll

I have missed three scans and two infusions.
I had an infusion in November 2021 , without the usual scan prior to it.

Not exactly unexpected, given the fact that were a fighting a pandemic.

I’m a bit surprised that you have scans as routine before an infusion. Do you know if this supposed to be standard ? Mum only has blood tests before an infusion - she has scans as and when the doctor orders them.

Blood tests just done for hopefully AA infusion this year, have missed the last 2 years due to covid.

Pammie, I attend a bone mineral clinic and all my treatment is managed by the bone mineral consultant and specialist nursethere. My GP has never had any input.

I used to attend the endicrinolgy clinic for treatment, but this new department was set up to deal with more severe cases.

My bone density is very low, due to 40+ years of long term steroid use, RA and genetic factors.
In addition to that I need very high doses of VitD, my levels are often very low.
I used to have bi annual scans, but changed to annual ones a number of years ago.

Every patient is different and I have never heard of a standard. Of course, others may have had a different experience.

pammie I had dexa scan after three years infusions

Marydoll

*Pammie*, I attend a bone mineral clinic and all my treatment is managed by the bone mineral consultant and specialist nursethere. My GP has never had any input.

I used to attend the endicrinolgy clinic for treatment, but this new department was set up to deal with more severe cases.

My bone density is very low, due to 40+ years of long term steroid use, RA and genetic factors.
In addition to that I need very high doses of VitD, my levels are often very low.
I used to have bi annual scans, but changed to annual ones a number of years ago.

Every patient is different and I have never heard of a standard. Of course, others may have had a different experience.

Ah, right thank you. Yours sounds a much more complicated condition. You’ve shed some light on something else for me too. I was diagnosed with RA a few years ago and have had regular steroid treatment as well as methotrexate and biological. I have been sent an appointment for a bone density scan, apparently at the request of the rheumatologist. I assumed it was because mum has the condition and they were just checking, but it makes a bit more sense now, thank you. I wish you the very best with your treatment ?

Yes you should ask for a bone scan. You may also be due a drug holiday. Long term use of these drugs has been shown to have negative effects, this was discovered when some patients taking them presented with very unusual fractures. Your bone density will be monitored regularly and you will be expected to take calcium and vit D

Thank you. I will contact my dr for advice.

Pammie it was actually my respiratory consultant, who referred me, because I was on such high doses of steroids. It was noticed primarily in my hands, but it opened a can of worms. Diagnosed also with RA at the same time, which had been masked for years by the high doses of steroids.

There is a genetic link, most of the maternal side of my family, have RA or lupus or both and also osteoporosis. At thirty years old, a Dexa scan revealed I had the hip of an eighty year old.

Like Kalu, I have dental problems and problems with the bones in my mouth. A year ago, my front tooth sheared off no decay at all!
Off course, accessing a dentist during sheilding, was very problematic, especially as there had to be liaison among my clinicians, before proceeding with treatment

It's a bummer, but I have excellent treatment and support and cannot complain. I am still here!

I have been in AA for three years now. Ever since I had a small fall back in early 2019 resulting in a spinal stress fracture. I have NEVER had any bone scan!!
When I moved house, I asked my new GP if I could have a DEXA scan as I really felt that I did not actually have osteoporosis. This scan was refused and I was told that any woman of my age who suffers such a stress fracture MUST have Osteoporosis, and therefore, does not need a bone scan. I am still not sure, as other falls have never resulted in any sort of fracture.
When I have my annual check up at my GP surgery in a few months time, I will ask - again - for a bone scan and also how long I should continue to take AA. Must say it has done wonders for my nails.

During the 1980's I was on very strong doses of Steroids for my Ulcerative Colitus.

Oh Marydoll, I do like you.
All these problems and you don't let them rule your life. You are an inspiration.

It seems that lots of monitoring of medical conditions has gone by the wayside due to the pandemic. Because there's a backlog of testing, surgeries etc I doubt this will improve soon. Some things previously could be taken as a bit dubious eg. I did medical summarising whilst DC were at high school as well as my nursing and we had to code any women with a fracture aged over 50 as a fracture due to osteopenia which triggered a scan. Some people would have had a fracture from a simple fall which can be an indicator of osteopenia but others had fallen down stairs or on ice and that could cause anyone to have a fracture. I guess having the scan is a good thing but once the code is in your records then any medic treating you has that information - could affect insurance. Sometimes people asked for codes to be removed (it was very easy) but many people would not be aware of it. The Practice I worked for only employed trained nurses to code so we would ask advice but lots of Practices used reception staff without the increased medical knowledge of nurses.

CraftyGranny

Oh Marydoll, I do like you.
All these problems and you don't let them rule your life. You are an inspiration.

Thanks, CraftyGranny. Not an inspiration, but just plain bolshie!!! I am my own worst enemy.
I think I am indestructible, unfortunately as well as all my difficulties, I am also delusional! Superwoman, I am not! ?

Funnily enough I chased my repeat Dexa Scan up this week. I had one 5 years ago after I fractured my ankle and have been on Bisophosphates since then. I checked with radiography department last week if they would be recalling me to be told to check with GP as up to them to refer me back. In fact turns out should have been 2 years ago! I've requested they refer me ASAP.

I take Ibandronic acid daily as to prevent secondary bone cancer. I have been on it for 2 years now and my oncologist recently booked me for a Dexa scan. Apparently I have osteopenia which is mild thinning of the bones and in my text from my GP he told me my next scan would be in 3 to 5 years.

It has all been very muddled for me, I took Alendrotnic Acid for five years with two yearly scans, then was told to give it a rest. When I enquired about a Dexa scan the GP said lets wait till you fall again and break a bone, I was so taken aback I got up and left it, wish I had spoken up now of course. I intend to tackle this soon.

Marydoll

CraftyGranny

Oh Marydoll, I do like you.
All these problems and you don't let them rule your life. You are an inspiration.

Thanks, CraftyGranny. Not an inspiration, but just plain bolshie!!! I am my own worst enemy.
I think I am indestructible, unfortunately as well as all my difficulties, I am also delusional! Superwoman, I am not! ?

Marydoll, and that is precisely why I admire you, bolshie or not!

Since the summer of 2017 I have been taking a weekly alendronic acid tablet. I was diagnosed with stage 1 breast cancer back then and must take alendronic acid, anastrozole and calcium and vitamin D tablets until July 2022. The only problem I’ve had with alendronic acid is when I had to have a tooth extracted. My dentist referred me to the dental hospital in Oxford. It was all slightly grim as the tooth - a molar - had to be removed in sections, which meant stitches and antibiotics. All being well, and if my annual mammogram in a week or so, is clear, I can stop taking all these tablets.

Can I ask you ladies on alendoric acid I was told last week I have osteopenia following bone scan breast nurse said will probably only need calcium and vitamin D I am on letrozole for 5yrs I have been struggling to speak to Dr have to ring on Wed to see if I can have telephone appointment I am hoping not to take phosphates as I need a tooth out soon .All our regular Drs have left during covid which doesn't help .!

I have had lots of dental work done over the years, caused by the osteoporosis and Sjogrens Syndrome, not the alendronic acid, which I have been on and off for over forty years. I have a number of crowns, but never had any problems.

My dentist is well aware of my history and said that jaw problems are actually very rare for patients on it. Your dentist should be aware you are on it have a discussion with you about the risks.. My consultant dentist always worked together.