The Alendronic acid dilemma

[Wells77]

Hi, Automatically given AA on PMR diagnosis. 3 months later , I discontinued it after researching potential problems, suffering heartburn, discussion with my dentist. GP not pleased although he did then refer me for dexa scan. This was above borderline so told myself if next 2yr scan showed deterioration, would reconsider. Disappointingly it has , despite fact that I have kept pred dosage under 7.5 mg for 16 months so perhaps rejecting AA was a mistake

Still feel extremely worried about resuming and could do with positive reassurance from any members having taken AA for several years. Does it work?

Using information from this forum and Kate Gilberts book have mostly self managed. Using 10% reduction, now on 0.75mg! , Has taken ages and a very sharp knife to reduce from 2mg. Aware that AA side effects can be similar to PMR will I be able to tell whether I have those symptoms or a PMR flare?

Thanks to everyone for contributing here. Must confess I tend to dip in and out. The varied problems can seem overwhelming at times. I realise that I have been extremely lucky so far. Prednisolone instant magic for me, no fatigue or weight gain, still dancing ,walking, exercising at normal levels. Therefore not felt in a position to post advice. Hopefully there are many more like me to give optimism to newbies

[DorsetLady PMRGCAuk volunteer]

Hi Wells77,

I have been taking AA for nearly 4 years - high doses of Pred and susceptible to osteoporosis Now I'm on v. low dose and find they are beginning to make me feel nauseous whereas they haven't in past. As going to check with GP next week. Lots of people says they're unnecessary, but best check with your doctor.

And please contribute more - we need good news to keep people positive and give the newbies hope!

[Wells77 in reply to DorsetLady]

Hi Dorset lady

Has there been much improvement in your bone density levels during those 4 years?

GPs not been sympathetic to my concerns, just adamant that AA low risk and advisable to prevent a future of broken bones! Learning that there have been hundreds of successful claims in US for jaw necrosis and femur fractures does not inspire confidence. Of course number really needs to be given as percentage to truly judge. My problem always trying to find out all pros and cons. Not enough pros so far.

[Berylholley in reply to Wells77]

I saw my rheumatologist Thursday for the first time and he insisted I take Atonel as I had already refused AA and was eating my lunch and jaw was quite dodgy. I found out the sun's rays are to be avoided.

[kingharold11]

I couldn't get on with AA so asked my GP for an alternative. He gave me Ibandronic acid which you take monthly and doesn't seem to have so many side effects. At least only taking it monthly its not so bad if you do.

[Wells77 in reply to kingharold11]

Thanks for info. Looked Ibandronic up, liked once a month and fact that it is coated. My GP unable to explain why on earth a tab known to cause damage to oesophagus unless you remain upright and drink loads of water is not made smaller and coated as additional precaution. Just curious!!

Unfortunately found negative listed for Ibandronic- it can give protection against spinal problems but not for hips. How weird. Being petite and slim hips are probably my vulnerable area....

[Meg1711b]

Hi Wells77,

I'm wondering about Alendronate also. I was on it for 3 months, but needed some dental work so discussed it with GP who said to go off until dental work is complete. Dental work is scheduled for two weeks from now, and I am also wondering about whether to take Alendronate again. I am now on 7, and read something that said bone loss less likely under 7.5, so plan to discuss with GP and Rhumy before restarting. My dexa from 18 months ago was OK, my dental X-rays from 4 months ago show bone thinning.

[HeronNS in reply to Meg1711b]

Unfortunately I believe some studies have shown that pred can continue to have negative impact on bone density well below even 5 mg daily dose, although it shouldn't be as significant as at higher doses. I'm too scared to take any of the OP meds despite diagnosis of osteopenia, so have really been taking care to get all the relevant supplements, watch my diet, and get lots of the right kinds of exercise. Time will tell if I've halted the bone thinning. It's a gamble, but so is taking the OP meds.

[Wells77 in reply to HeronNS]

Whoops just sent wrong reply to you. We all have to make own decisions but certainly not easy. The more facts I discover, the more apprehensive I become.Find all the negatives, no one seems to be presenting any evidence that AA actually works.

[Wells77 in reply to Meg1711b]

Hi Meg

Hope you have also managed to discuss with your dentist. Mine was very knowledgeable and more informative than my GP re AA. He did not try to influence me either way but it was the main reason I discontinued. I have a long history of poor dental health and found implications of AA quite scary especially when told he would refer me to hospital for any extractions. Obviously anyone with good teeth is lower risk. I have since had a tooth out and will have to put possible dental complications back into equation whilst making decision whether to take AA again.

My own GP has been adamant that AA should be taken whatever

[HeronNS in reply to Wells77]

My doctor was quite laid back about AA at first. Then she went to a workshop on osteoporosis and is much more keen that I start medication! I just continue to say no and hope that everything I'm doing will be enough. What I've read about the OP meds is that they do in fact increase bone density but it's because they actually halt normal bone remodelling, so that the bone which grows is being formed on old bone. Consequently after a few years the benefits of OP meds vanish, and the likelihood of what they like to call "atypical" fractures increases. Personally I don't think anyone should consider OP meds unless they are in the unfortunate position of already having had spine fractures in which case I have no idea what would be the best choice. That being said, we can't do nothing, either, so we all need to do what we can to maintain our bone health. I wish this was on the doctors' radar so that when we are young we can be getting advice on how to maintain and improve bone density so that we aren't at so much risk as we age.

[Annodomini]

In December, I had the first of three annual infusions of Zalendronic Acid with none of the long list of possible side effects. Of course, reactions vary. It's worth asking your doctor about it. Also, are you taking a Calcium+Vit D supplement? I have to take that as well.

[Wells77 in reply to Annodomini]

Have been on adcalD throughout, also eat cheese and yoghurt daily,non smoker, not overweight,lots of exercise. I am 70 so suspect could be natural ageing process. Without dexa scan would not have known or worried!

[Lyn_seaside]

I'm 59 and have taken AA since I was 45, one five year stint, then a gap, then another stint, Was osteopaenic at 45, hence the AA, but the thinning has been stopped in its tracks. I've had no side effects at all, and it really is easy to manage. Take it, have a shower, get dressed, that takes 20 mins, then you can eat. Been on Pred for a year, following PMR arriving about 15 months ago, and awaiting a dexa scan. If no worse, then will come off AA for a year or two and then probably need to go on again, or something else if research has moved on.

I would say, unless you have side effects, give AA the benefit of the doubt.

[Peggles in reply to Lyn_seaside]

Thanks for this! I'm 51 and newly diagnosed and just terrified of everything. Can't believe the cocktail of drugs I have to take everyday and this one looks super scary but now I'm happier

[Lyn_seaside in reply to Peggles]

This was a year ago, I've since come off Pred for six months and then gone backon 5mg and tapered back down to 2mg. In all that time, I've gone on leading an entirely normal life, walking miles every day and running a very busy active business. Unless you suffer the crippling fatigue some people seem to, I really don't think this illness has to rule your lilfe. Take what you need to, but make sure you're making an informed decision! Good luck.

[Peggles in reply to Lyn_seaside]

Again, thanks Lyn, I was pretty active before (competing two horses) but the fatigue has got to me. However, if I have one good day followed by one tired day, then I can cope! Luckily I have a low pressure home based business March to November. Onwards!

[Lyn_seaside in reply to Peggles]

Hope you improve quickly so that life can continue as much as possible as before.

[Parijm]

I am 63 and was prescribed AA with Calcichew D3 when I started Prednisolone 2 years ago. Not aware of any issues with AA. I asked for a bone density scan last summer since no one had offered this. Result borderline so guess putting me on AA was right although I feel a scan at the beginning would have been useful to gauge if things are improving at all.