Alendronic acid (sodium alendronate): a dilemma...

Hello lupus sufferers,

When I was first diagnosed with SLE, DLE and lupus nephritis some 4 years ago I was initially prescribed high doses of corticosteroid, Prednisolone, 50mg to begin with, MMF, hydroxychlorine etc including weekly 70mg tablets of Alendronic acid.

I was told by the consultant nephrologist that the Alendronic acid was required as protection for “steroid induced” osteoporosis. The advice is to have an X-ray of the jaw before one starts the weekly tabs and see a dentist beforehand.

Ironically as most know it is a bisphosphonate, needs to be taken on an empty stomach whilst upright for 1/2 hour but can also cause osteonecrosis of the jawbone which can lead to teeth falling out?😢!

A back old molar tooth (half filled with Hg amalgam) did fall out some three months ago and it made me anxious about this serious side effect. At my last consultation with the doc we both agreed that the tooth falling out could be due to natural ageing or perhaps the start of jaw necrosis. Difficult to be sure?!

As a caution we both agreed to STOP the Alendronic acid as I’m now on a much reduced dose of Prednisolone, 4mg/day >>eventually to 1mg/day but still on vit D plus calcium tablets (chewable), it was’nt necessary anymore.

Difficult to say whether Alendronic acid caused it?

Wondering whether others have had Alendronic acid prescribed and have had any experiences with it?🤔

Would appreciate any of your experiences.

Thanks.

Regards

[PMRpro]

I had it prescribed together with pred 10 years ago. But I wasn't happy so discussed it with a different doctor. I had a dexascan done which showed t-scores that were almost normal for a 30 year-old so I only ever took 4 tablets. I have religiously taken my calcium and vit D though. After over 7 years at 10mg and above for most of the time my bone density had barely changed. Osteoporosis is NOT inevitable - it happens for some and not others. I know several others on my home forum just like me.

However - it is recommended AA not be used for more than 2-3 years without a drug holiday to reduce the risks - it was 5 at first, now they are saying less. So you stopping it is fine.

Has your dentist said anything? Are your gums in good shape? When on AA you should be scrupulous about mouth hygiene - inflamed gums is the primary cause of loose teeth because the pockets around the roots deepen and that leads to the bone wearing away - with our without pred or AA. My cousin who has a history of neither is losing her teeth like that because her dentist never told her she had gum disease.

[PMRpro]

No much different in our neck of the woods!!!! They try to hand out about half a dozen things at some point because of pred - and often just make things worse. Nothing new there then!!!

I have 2 consultants at the local hospital who against unnecessary medication - and one is almost as rabid as me about polypharmacy!!! Just because 2 drugs don't interact doesn't apply when there are 3, or 4 or 5 ...

[Lizziequink]

Hi Alexa. I was prescribed AA many years ago (have actually lost tract of how many) as I was diagnosed with osteoporosis at 42. There was a family history of it - my sister was diagnosed in her 20s and my mother also it. Not sure when mum developed it but certainly some years before her death at 54. I don't recall ever being told that AA could cause dental problems, and my dentist has never mentioned it either despite having a list of meds I'm on. Also, I've had problems with my teeth since I was a toddler, not because of poor dental care, just one of these things I guess. I'll be perfectly honest, until this morning I'd never read the leaflet that comes with the tablets. I guess I'm one of the 'old school' of people that think medics know what they're doing, but since I have a number of auto-immune conditions, including Sjogren's, I'm beginning to wonder if I should be taking them at all. I have an appointment with my GP on Friday morning and will discuss it with her then.

[GlasgowHen]

I was prescribed alendronic acid years ago but only took 3 tablets as I just couldn’t tolerate it. My dexa scan showed osteopenic bones. 3 years later there was significant bone loss but still not in the osteoporotic range and I was given risendronate. That was even worse and I have never felt so ill. So my rheumatologist and the dexa scan consultant told me they will wait another 5 years, hrt with menopause and will treat me with iv biphosphonates when the time comes.. I couldn’t quite get my head round they were waiting for osteoporosis before treating so I phoned the uk osteoporosis helpline. They told me about the jaw and teeth issues and as you can only have one 5 year cycle of biphosphanates they wait until absolutely necessary.

My dentist is well aware of jaw necrosis with them and he did a pre treatment jaw x Ray.

[Lizziequink]

Hi again Alexa. The GP I'm seeing on Friday wasn't with our practice when I first started with the AA and is much more clued up about things and is prepared to listen to any concerns I might have so hopefully she'll support me in coming off them. It's quite a while since I last had a scan to check my bone density so could probably do with having that done too. Thanks for your advice. It's really appreciated. Regards, Liz