Osteoporosis risk

I think the drug you might mean is alendronic acid, which is taken once a week. There is quite a lot of information about it on the web. I was prescribed it, but have chosen not to take it. I think I have read somewhere that your vitamin d levels have to be correct for the drug to be effective. Lucky you to be having a bone density scan. I had to pay for mine, as my doctor says he will arrange one when I finish the course of steroids, and who knows when that will be.

Gabriella

Hello again

I have had PMR twice First bout in 2002 and then no one was given bone protection unless they had a Dexa scan and it showed they had the start of at least Osteopena

With my 2nd bout in 2008 my Dr said thinking had changed and they were working on prevention rather than cure and i was started on Alecdronic Acid once weekly Because I only took it once a week I took less notice of it then the steroids

After 2 years i read reports in the papers about court cases involving the drug in the USA It said one of the side effects can be necrosis of the jaw and my Dentist said i had some bone loss in my jaw so I stopped taking it

I explained to my Dr and because I am on a lower dose of steroids and my Dexa scan was OK she was happy with that She did wonder if it would continue to be given to everyone because of some of the side effects She has a patient who is convinced her cancer of the osophegus was caused by it

I did find a US website that had over a 1000 postings on it !!

My Dr said as I am still on steroids we will see what my next Dexa scans say and there are other drugs you can take

Insist on dexa scan ASAP and if you are at risk of osteoporosis you obviously dont have so many options

I know Eileen who posts on here normally a lot ( but is busy at present ) and has a large medical knowledge doesent approve of it being given to people when there is no proof of risk

So look into it as much as you can

Best wishes

Mrs G

Hello Brighid -

My experience was that I was prescribed alendronic acid when I started taking prednisolone. I was also taking HRT - and have been for the last 14 years so.

A few weeks later, I had a Dexa Scan for bone density - which turned out to be normal (possibly because of the HRT - I'm 72 by the way). Anyway - the bone people said that I should choose either to continue with the HRT or to take alendronic acid instead - NOT BOTH - which could lead to overcalcification of the bones.

I chose to continue with the HRT and drop the alendronic acid. My doctor and the rheumatologist were OK with my decision as they know I am aware of the possible risks of HRT and I only take it at half dose - one tablet every other day rather than every day. I do of course also take calcium tablets.

Not all doctors would approve of this, but I am letting you know my experience, as HRT is a possible alternative to alendronic acid.

Good luck and I hope you get a bone scan soon.

Hilary

Hello Brighid

When I first started taking steroids (40mgs) I was aware of the risk to my bones so I asked the rheumy and the GP if I could have a DEXA just to get a baseline reading - they both refused. I arranged one privately and the result was normal. However, 2 years later I asked the rheumy for a repeat and this time he agreed - the reading was now osteopenia. Another 2 years later and I have just had my third DEXA which I'm happy to say has not progressed to osteoporosis. I am now on .5mg daily with a few zero Pred days thrown in.

I must add that I have not taken any bone protection throughout nor have I taken calcium supplements - the latter not recommended because I have reduced kidney function.

I am almost 70 and I feel that a lot of people of my age are at risk of a small amount of bone loss - in fact I have 4 friends who have recently been diagnosed with osteoporosis and none of them has taken steroids!

I consider myself very lucky especially as I commenced on a very high steroid dose due to GCA alongside the PMR. Most steroid-related bone loss occurs during the first few months and, of course, that is when I was on the high doses.

I am very glad that I pushed for a DEXA scan at the outset (even though I had to pay) so at least I know that my small bone loss (osteopenia) was definitely due to the steroids.

I have ensured that I take in as much dietary calcium as possible throughout my time on steroids, mainly by way of a daily live yoghurt (also good for lining the tummy from the steroids, especially as I have been unable to tolerate the stomach protection pills); daily milk on my muesli etc, a helping of oily fish (eg sardines (with bones - good for our bones! - salmon and mackerel) several times a week. The latter also contains Vit D which is essential for the bones. Another very beneficial test is a Vit D blood test as anyone deficient in Vit D can suffer from pain - PMR pain is enough!

MrsO

Hello Brighid

I was given Alendronic Acid a few months into the steroids because I had osteopenia in my lumber spine at Dexa scan. However, after a few months, I started gatting a weird ache in my jaw. I was sent to see a consultant (general medicine) who said that I should stop taking it at once and never touch the bisphosphonate family of drugs again as it was probably down to this. And to avoit dental surgery as long as possible. By the time I saw him I had already stopped it and the aching had gone. So, he didnt send me for a scan which he said he was intending to do.

Recently I had to have a root canal filling and the dentist said he would prefer to put on a crown rather than remove the tooth and that, due to having taken AA, he would have had to send me to a specialist centre to have it taken out.

So, think twice - be careful.

Beev

If it's ever recommended to me to take Fosomax (AA) I'm going to turn it down.

My mother-in-law (age 86) was put on Fosomax years ago after being in a minor auto accident where the air bag broke her right wrist and forearm in three places. A Dexa scan showed she had Osteoporosis. She has taken Fosomax now for at least 4 years. I've tried telling her about the side-effects but she won't listen. She has an unexplainable rash on her back and legs, gastro upset (GERD), stomach ulcer and a lot of dental work in the past two years.

It might help slow some bone loss but what is the quality of the bones? I see lawyers advertising on the TV looking for clients who ever took Fosomax (AA) where they've had numerous side-effects.

Hi Brighid,

I have been taking Prednisolone for just a year now. I was offered AA, 3 months into taking the steroid. I had a DEXA scan, also 3 months into taking the steroids, and it was normal. I have so far refused the AA, and would not consider taking it unless there was proof of osteoporosis being present. I take a calcium and vit D supplement twice daily, and I have a very high calcium diet. I started on 15mg pred and am now down to 5.

Best wishes,

Molly.

My GP also gave the \"prevention is better than cure\" argument but it is a fallacy here in my opinion.

If your bone density is still OK there is no point taking it as the build up of extra bone tissue with alendronic acid (AA) only continues whilst you are taking it and it has now been recommended that it should not be given to patients for more than 5 years at a time because of the longterm effects which are now beginning to appear. The company who developed it did a major marketing action to persuade the world what a wonderful drug it is, preventing broken hips in little old ladies.

It has a lot of very nasty side-effects which, if you are the one to suffer them, really are not nice. One is this loss of bone from the jaw which can eventually lead to necrosis of the jaw - death of the bone tissue. It also can cause a very unusual form of fractured thigh bone. It is also very hard on the stomach. Like many drugs, the full scale of the downsides only started to appear once the general public was exposed to it in large numbers rather than the trial patients. To be fair, they are not very common - but the stuff remains in your body for many years. At present they are saying more than 10, but that is only because that is the limit of their experience. Serious questions have been raised in the USA where it was used quite a lot in otherwise healthy people to prevent osteoporosis and broken bones.

It is essential to have a dexa scan, preferably after the first few months of steroids which is when the majority of the bone density loss with steroids occurs. If you are still in the normal range you need calcium and vitamin D and body-weight-bearing exercise. The dexa scans should be repeated every 2 years and if you get into the low range then consider the AA if you wish. You are then taking it for need and that 5 years worth is of some use. But you might take it and the osteoporosis only develop much later - at a time when you should be stopping taking the AA according to the recommendations. There are also patients who have faithfully taken it for years and it has NOT prevented them having fractures.

One problem that does arise is that many GPs have been told what a wonderful thing it is at a pivotal point in their education and find it hard to let go of what was presented to them as a \"good thing\". Nothing would induce me to take it unless I have demonstrable osteoporosis. But not everybody breaks something as they get older and it is also arguable that a good boost of vitamin D washed down by plenty of fluids so you are well hydrated is more likely to to prevent the falls that so often cause LOLs to break their hips! There are studies that show that getting vit D levels up to where they should be (it is now recognised that most people are seriously deficient) and making sure people are not dehydrated both contribute greatly to improvements in their balance (many elderly people do not drink enough for fear of having to go to the toilet more often). Drinking several glasses of water a day is important to help prevent confusion and poor balance in the elderly - which can lead to other problems.

Eileen