Alendronic Acid

[Ida-June128]

I was advised to take Alendronic Acid weekly to counteract the danger to my bones from the Pred. I am not going to recount what has happened to me as I don't want to start a scare but please, please, unless you already have osteoporosis and need the medication INSIST ON A BONE SCAN before starting to take it. If your bones are fine you probably don't need to take it.......it is easy and quick to have a scan every year if there is a possibility of damage from the steroids; the side effects of unnecessary treatment with Alendronic Acid can be life changing as I have found out. Always read the leaflet to the very end when starting new medication please to see just what MIGHT happen.

[piglette]

I had a Dexascan last year, but was told I cannot have another one for three years on the NHS. Does it vary from area to area?

[Runrig01 in reply to piglette]

My GP and rheumy refused a dexa scan so I organise them myself, costs me about £60 a year but is worth it. I have osteopenia, and was taking AA till recently. My rheumy stopped it because I had stress fractures of my fibula, different leg 18 months apart. It is felt this was a side effect of AA. I now don't have to take anything

[piglette in reply to Runrig01]

My GP seemed to think I had pretty good readings which is good news. So I probably will wait the three years. It does seem to vary across the country though if Ida-June can have one every year.

[PMRpro Ambassador in reply to piglette]

It depends on several factors. One is that the changes are no enormous and the nature of the scan is that there needs to be a certain amount of change before it is obvious - so longer gaps are needed. There is a shortage of machines and there are more in some places than others - so there is a degree of rationing...

[Ida-June128 in reply to Runrig01]

The leaflet with the AA advises that it can cause stress fractures of the femur. If I had read this I probably wouldn't have taken it. I had a lot of pain in my left hip two years ago, missed one step at the bottom of a staircase and my femur snapped..it turned out I already had a stress fracture of the femur. It has been pinned with a titanium rod but after two years has not knitted properly due to the Pred for the PMR. I also now have a stress fracture of the right femur so have to be very careful that this does not snap too. Needing 2 crutches to get around is hard as my main PMR is in my upper arms, shoulders and hands, also in my thighs and sometimes I have problems working out what is bone pain and what is PMR.

[Runrig01 in reply to Ida-June128]

The FDA warnings re AA mention stress fractures of the fibula as a side effect in 1% of side effects reported. Sorry to hear about your stress fractures of the femur (which is more common). I have been referred to podiatry to see if they can help reduce the chance of repeated stress fractures. Unfortunately AA can stay in our body for 10 years. Thankfully this time my ankle healed fairly quickly in 6 weeks compared to 10 last time. Most bone loss from steroids occurs in the first 6 months of taking them, I've been in them 2.5 yr so hopefully bone density won't worsen now. Fingers crossed. Good luck with your recovery. I know what you mean with the crutches I found them hard on my shoulders and neck where I have pmr and I'm only just 50.

[PMRpro Ambassador in reply to Runrig01]

The figure about AA remaining in the body for 10 years is only what they know so far. AA has only been used in large amounts for about 15 years, looking at whether it was still in the body was done about 5 years ago. The length of time it stays in the body will increase each time they look - and I suspect it will turn out to be a permanent remnant.

[Runrig01 in reply to PMRpro]

Well I hope my 2 years of taking it doesn't cause me any further problems. Don't relish the idea of it being part of me permanently. Thanks for the info though 😀

[Ida-June128 in reply to Runrig01]

I was only taking the AA for 2 years when the first femur fractured.....I was told that no fractures of the femur usually occur until AA has been taken for at least 5 years, but this now seems not to be the case. What I can't get over is that after the first femur snapped I was told to go on taking the AA for another year. As soon as the second femur fractured I stopped taking it.

[Runrig01 in reply to Ida-June128]

I had only taken it for 9 month when my first fibula fracture occurred. I took it for another 18 months

[Ida-June128 in reply to piglette]

I think it must do. I live in Surrey. I would happily pay if I needed to though.

[piglette in reply to Ida-June128]

That is interesting. Were you told you could have a Dexascan every year with PMR?

[Ida-June128 in reply to piglette]

I asked after the first year and had a second one and have not been told that I can not have another so expect to have them every 12 months.. If not I will pay myself.

[4sibbs]

Thanks for this post my 90 year old mum has been taking AA and Adcal for 18 months we have an appointment with her rheumatologist in a few weeks & I will ask if it is still necessary she is currently on 9mg prednisolone.

[lesley2015]

I have been on Preds now for 9 weeks; GCA/PMR - 4 week 40mgs, 3 weeks 30 mgs and 2 weeks 25mgs and have now been told to drop to 20mgs for 4 weeks if poss then 17.5. So my question, if anyone can shed some light ... I am also on Alendronic Acid, and it makes me feel awful on the day I take this and the following one. At what stage of preds is this not essential to use ...I did ask my Rhuemy but he wasn't interested in how it made me feel or taking me off it, or explaining anything further ......

Would be grateful for any info ... thanks

[Ida-June128 in reply to lesley2015]

Have you had a dexa scan? If not I think you should ask for one as you may not need the AA although I know in some cases the pred can cause weakening of the bone quite quickly. The medics just seem to bung you on it regardless of how it makes you feel to cover themselves and if it is making you ill I think you should talk talk to your GP very soon. I read from another post that a lady pays for her scan which she said is about £60. Might be worth it if the GP/Rheumy won't arrange.

[lesley2015 in reply to Ida-June128]

Thank you , no it wasn't discussed. Sorry to ask another question, do you know how long before the damage is done by the preds? Do I get time to have the scan?

Thanks

[Ida-June128 in reply to lesley2015]

I have no idea on timing, i expect it would vary from person to person and depend on age ad lifestyle. Talking to your GP should be able to help. I think I have been lucky with my rheumy and GP.

[Klah in reply to Ida-June128]

I am in the U.S. And all the women I know generally agree that AA is a bad drug...even if you already have osteoporosis! I had a bone scan recently that showed that my bone density had increased by a 'statistically significant 3.3%' and my rheumy still wants me to take the drug, which I will not. The "density" created by the drug is not good...it interferes with the normal bone replacement. Read Lloyd the pros and cons before you leap.😊

[Ida-June128]

With the first one I thought my hip was giving out and walking was extremely painful. With the second the pain was lower down, nearer the neck of the femur; after a week or so I couldn't weight bear on that leg at all. X ray didn't show it up and an MRI was 'inconclusive' so they sent me for a nuclear scan which showed it up straight away. The girl who did the nuclear scan says she sees lots of people with different conditions who have lost time with normal x rays and MRI's and need the nuclear scan to get the right picture.

[Runrig01]

Depends where it is. Mine was at the ankle, couldn't weight bear and like Ifa X-ray did not show it up. I'm fortunate that I'm an orthopaedic ward sister so the ankle specialist had s look and diagnosed it. I had redness and swelling and the bone was very tender to touch.

[Ida-June128 in reply to Runrig01]

There seem to be several at the ankle. It's just that the leaflet with the AA mentions only 'stress fractures of the femur'.

[Runrig01 in reply to Ida-June128]

The pharmacist directed me to an American site where stress fracture of the fibula is listed

[Ida-June128 in reply to Runrig01]

Does it mention the femur as well?