Alendronic acid

[suracon]

Oh dear!! On Friday went to see my GP as I have now been on pred. For two weeks and as you know it has taken most of my pain away. So he explained I should continue with the 15mg and in the meantime I should now take one tablet a week of alendronic acid etc. Well guess what? I took my first dose yesterday morning and by the afternoon felt bloated and uncomfortable and today have got a painful back!! Not going to take any more. According to leaflet the medication can cause stomach upset and MUSCULAR PAINS!!! A rather pointless medication........going for a bone scan at beginning of Sept. I gather there is an alternative medication. Anyone else had the same experience? Know of the alternatives?

[Celtic PMRGCAuk volunteer]

Suracon, have you had a DEXA scan in the past which shows that you have either osteoporosis or osteopenia? If not, then your GP should have arranged one BEFORE prescribing Alendronic Acid to see if you actually need it. If the DEXA scan shows normal bone density, then all you need is a daily calcium plus Vit D supplement plus a good dietary intake of calcium for protection.

In spite of what some doctors think, it certainly isn't a given that patients on steroids will experience thinning bones. I had only the tiniest amount of bone thinning of the spine during 5-6 years on steroids, starting at 40mg, and the latest scan after being off steroids for two years actually showed an improvement. A great result considering that I never had any bone protection meds, not even the usual calcium plus Vit D, throughout.

[PMRpro Ambassador]

First of all: have you had a dexascn done that shows you already need bone protection medication over and above calcium and vit D supplements? If not - say you want one before considering any other substances. If your GP is difficult it is possible to get one done privately though you shouldn't have to.

I had been on pred for well over 3 years at my last dexascan, most of the time at above 10mg, the scan was essentially unchanged from the one done 2 months into steroid therapy. They were done on different machines so can't be compared directly but both were perfectly acceptable. I only took AA for 4 weeks - hated it so much I did my homework and discussed it with a different GP. His comment: "Well, they are beginning to think that maybe it isn't as good as the makers claimed and that it shouldn't be used without reason." I stopped and have taken no more. Unlike Celtic I have been taking calcium and vit D.

Before you started the AA, were you told to get any dental work that was needed sorted out and did you have your calcium and vit D levels checked and corrected if they weren't ideal? Unless your vit D level is high enough the AA won't achieve much anyway. Since most people of our age are low on vit D it's likely you are too. I was - despite spending a lot of time outdoors in the summer, not necessarily in direct sun but with a fair amount of skin exposed.

[Chihuahua1]

I had problems with it and each week I took the dose the symptoms increased culminating in severe stomach cramps that had me doubled over. The doctor swapped me onto risedronate and I have had no problems since. My doctor put me on it as a preventative measure and I am quite happy to continue to take it whilst I'm not showing any reactions to it. I may change my mind in the future if I start to react.Many people react to Alendronic acid. Hope this helps.

[Jora]

I shall watch your responses with interest as I am in much the same position. I definitely do have osteoporosis, but would dearly love to stay off biophosphonates ( I think that's the name of the group of drugs). I'm tapering to 7.5 mg steroids. And haven't been totally off them for over 2 years. I keep getting infections on the Enbrel and Methotrexate, so then have to stop those two drugs, and increase the steroids for a while. I'm 71 and already had osteopenia before the RA manifested itself. I've resisted the Alendronic Acid so far, by taking calcium and Vit D, but every time I see the consultant he tries to persuade me to take the AA. Jora

[jinasc in reply to Jora]

Jora

Visit the National Osteoporosis website and read up on all the biophosonates available.

[Jora]

Thank you so much. I will do so This evening. j

[Lyn_seaside]

Just to put the other side, I have had osteopaenia (pre-osteoporosis) for ten years (I'm 59) and have taken AA for five years, then had a two year gap and started it again. I have had absolutely no side-effects and my Dexa scans show that it has stopped the thinning in its tracks. I also take Calcium and VitD. So, don't write AA off completely, it works well for some, but, of course, we're all different and some people will have a different experience. Hope this helps.

[Caro12line]

Following this thread as I am taking AA with no side effect (although difficult to tell with the numerous effects from the Pred!). But I have been taken off Adcal-D because my blood calcium level is high. I have asked my Rheumy and my GP about this and both seem happy for me to continue with this. I am not sure how the AA works. Will it be doing me any good? My last Dexa scan 2 years ago (before I started taking Pred) was on the low side of normal. Maybe I need another scan now I am into 7 months of taking Pred?

[PMRpro Ambassador in reply to Caro12line]

The extra calcium and vit D is needed to compensate for the extra you tend to lose while taking pred. When you are on AA that is less important because it reduces the amount lost from your bones which is how it prevents loss of bone density. Bone isn't a "dead" substance, it is constantly being broken down and rebuilt and when the breakdown exceeds the building the result is loss of bone density.

It is essential that you have enough calcium and vit D for AA to work and that must be checked before starting taking it and at intervals afterwards but too high a level of calcium in the blood is also very bad for you - they've found that and that's why they have stopped your supplements.

The recommendations are that a dexascan be repeated every couple of years - without doing that they can't actually be sure that the AA is working. I would ask - and if you really want one and the GP and co are not forthcoming, it costs about £55 in several centres to have one done privately.

[Celtic PMRGCAuk volunteer]

Caro12line

Alendronic acid works by binding tightly to bone and preventing calcium being removed leading to a loss of bone density. It has been shown to reduce the risk of spinal and hip fractures in those who are at risk.

If your last DEXA was between 2 and 3 years ago, then your GP should be agreeable to arranging a repeat - if after 7 months on steroids your bone density is still within the normal range (albeit, as you say, "on the low side of normal"), you may not need to remain on AA. Even becoming very slightly into the osteopenic range during my steroid days, I didn't need any bone protection - in fact a repeat scan some time after coming off steroids actually showed an improvement.

[Caro12line]

Thank you Celtic and PMRpro as always you have the answers to my concerns x