Vasculitis UK
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Biphosonates ( Alendronic acid etc )

Came across this on Twitter

bjr.boneandjoint.org.uk/con...

It's some new research on the effect of Biphosonates on bone and whether they actually make a difference to fracture risk.

High dose prednisolone can cause oesteoporosis ( a weakening of the bone making fractures more likely ).

I know that many with a Vasculitis diagnosis are given the likes of Alendronic acid etc to prevent fractures.

Assessing fracture risk can be complex, age, sex, family history and diet etc can all have an effect.

A DEXA scan is a bone scan which gives information on the state of a patients bone but access to them varies up and down the country. A good diet, weight bearing exercise and optimum levels of calcium and Vit D can all have a positive effect on bone health.

I do think it's reasonable to ask for a DEXA scan before taking Alendronic acid and ask for the evidence base that they prevent fractures. No one wants to take any more medication than they have to.

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Can you post this over on the PMRGCA forum please. I have posted about a couple of other studies casting doubt on the bisphosphonates but I think this is a new one. Don't want to steal your findings.

It is a continuing source of concern to us as I'm sure you have noticed!

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Eek! I have full blown osteoporosis from steroids, confirmed by DEXA scan. My first two DEXA scans showed osteopenia, but it was only with the third confirming I'd progressed to full osteoporosis that I started on Alendronic Acid. Bit worrying re the micro fracture risk. But I will persevere!

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I've commented before that I think there is a serious lack of formal protocols re bisphosphonates and pre menopausal women. The guidelines are clear for post menopausal women, but for younger women, like me, there aren't clear guidelines. Which can lead to a lot of variation. Eg some consultants prescribe it without DEXA scans in a preventative way. With others even a positive DEXA osteoporosis result may not lead to prescription, or doubts about what to do.

I wonder if this is something that Vasculitis UK could lobby on, to encourage more consistent best practice for patients, given that an increasingly large number of younger women are prescribed long term steroids?

This suggestion isn't to take away the flexibility needed in individual cases. But just to complain, yet again, that there aren't standard guidelines - well any guidelines really! - for younger women in this situation. And I don't think that is a good thing. Speaking as someone in that situation.

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Hi Viv,

I can certainly try to raise it at the next UKIVAS meeting if there is time.

I agree there is a lack of guidelines and practice varies considerably in the UK.

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Thank you very much :)

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I'm not sure about young women - but I do know it doesn't work the same in men, especially young men. But the FDA has said for some years now it shouldn't be used for more than 3 years at a time anyway.

But the bottom line is that all of it is predicated on "it increases bone density". But high bone density doesn't mean no fractures neither does low bone density mean fractures.

The figures at the back of my mind are that 40% of patients on pred develop low bone density. But 50% of women in the USA develop osteoporosis. Which just doesn't make sense does it?

There are a lot of things to be done that reduce the risk of falls - which is actually far more important than raising bone density. Most of them are simple and have no side effects at all.

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I think there's a difference though between high bone density and trying to regain something approaching normal density. Or even way below density, but not so vastly abnormal. I'd have to be convinced that's a bad thing.

My fear isn't falls so much as fractures that are liable to happen anyway. Which given the state of my bones now, thanks to 20 years of steroids, is horribly likely.

I've tried alternative approaches, including diet (with much milk) and calcium. But my bones still worsened despite that. Hence osteoporosis now.

Falls are more likely to be an issue for much older women. I think the risk factors with pre menopausal women are different.

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There has been a little research into Vit K2 to help bone health but no big randomised controlled trials. Weight bearing exercise is just as important as calcium intake.

Fragility fractures have a massive personal and NHS cost, it's another thing that there needs to be much more awareness of and preventative measures put in place.

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And of course weight bearing exercise may be very difficult for patients who're on steroids, because of their health circumstances! My vasculitis is a very MS-like form, and it's just not an option for me :(

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I'm an occupational therapist with GPA. I think in terms of weight bearing activity rather than exercise. There's a subtle difference but it gives value to our everyday efforts to get out of bed, on/off toilet or even walk to the shop on a good day.

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Thanks. Yes that's certainly a good way of looking at things :) Still a major problem for me, with my MS-like form of vasculitis. But a bit more achievable. Thanks!

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Good point, thank you. Need to think more clearly about the terms I use.

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That's what I'm saying - people with "normal" bone density have fractures, many with "low" bone density don't. Bone density is only one aspect - and where the line was drawn for "normal" or "low" was a rather arbitrary measure. The incidence of hip fractures was falling anyway, before the bisphosphonates were made widely available, so the reduction in that can't be taken as entirely the effect of using them.

What is being found is that longer term use of bisphosphonates is leading to the formation of bone that is denser - but not necessarily healthily denser, it is more brittle and in some cases forms hairline cracks. One of the adverse events with them is development of what are called atypical femoral fractures - where the thigh bone just cracks without ANY event where you might expect it. Just stepping off a kerb can be enough jar to cause it. I don't know if she has ever posted here, but we have a lady on the PMRGCA forum who has bilateral atypical femoral fractures which won't heal. Her doctors are sure it was due to bisphosphonate treatment and she hadn't been on them more than a couple of years.

There has been research with the vibration plates that shows they increase bone density as well as improving muscle tone - and they are recommended as worth consideration for people who are unable to undertake normal weight bearing exercise. Resistance training also contributes - and can be done by people unable to walk.

There is a small amount of evidence that there is some reduction when hip protectors are worn - and as we are so often told, every little helps!

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Thanks :) Yes that sounds sensible. I wasn't thinking clearly enough last night when I replied!

It still puts osteoporosis patients in a very difficult situation. For now I'm following the "take alendronic acid" medical advice. Hopefully the medics will figure out things clearer in future!

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I have Osteoporosis, low density bones AND fractures (4 in my spine) Only taking 5mg steroids now, but also have steroids in my inhalers (Bronchiectasis) and also used them as part of my cancer treatment. Add RA and Osteoarthritis into the mix ( just for fun you understand) Tried Alendronic and Risedronic but caused too much pain, so as well as Calcium and vitamin D, I now have Zolendronic Acid infusions. They told me Osteoporosis shouldn't cause pain, only when you fracture. They lied. Two years after diagnosis, I'm still on Fentanyl and Oramorph for the pain!

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Oh poor you :(

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National Osteoporosis site report on the above.

nos.org.uk/news/2017/march/...

Mind it would not be my drug of preference are others listed on that site which I would prefer if I ever needed too.

Bones till 97% even though I had GCA and a high doses of steroids and 5 years before it went into remission. Bone density never changed.

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Thanks for this. Mine was stopped on last consultant visit as I am now only on5mg of prednisolone. It was only because I asked for a bone scan on the advice of this forum previously! I wouldn’t have known the risks otherwise and would still be taking it. Definitely should be proper guidelines in place.

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I should say that I try not to " scaremonger " but part of the reason for posting these types of things is to give patients information so we can have meaningful conversations with Consultants about risk V benefit.

A baseline DEXA scan is so important but doesn't appear to be happening unfortunately.

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