Problems : I was diagnosed with polymialga 1... - PMRGCAuk

PMRGCAuk

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Problems

di-bach profile image
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I was diagnosed with polymialga 18 months ago and had bone density scan after 12 months of treatment which showed high risk of fractures I have been taking B3 calcium tablets and stated taking Vit K2 but had a bad reaction resulting in trip to A&E adrenaline and antihistamine injections and three days dosage of 20 mg prednisolone but going back to my reduced prednisolone I was back to square one with my condition resolved with increasing prednisolone dosage the problem is I have reflux and I'm a bit nervous about taking alendronic acid because of the risk any thoughts

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di-bach
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PMRpro profile image
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Where do you live? When I saw your name I assumed Wales but that is a big lateral mind jump!

If you have reflux then AA is contraindicated - which means the NHS will fund other substances. There is another bisphosphonate that is said to be less irritant on the stomach but that doesn't mean non-irritant even if some doctors think it does. Each has its own contraindications so it is important to make sure the next option is also suitable - one friend was told she must take one when it said quite clearly a family history of cardiovascular disease was a contraindication as was also pre-existing DVT, which the dr knew were both there. Needless to say she declined it!

There are also injected bisphosphonates which obviously avoid direct gastric problems. In the UK NICE has created a list of first, second and third line medications which you are meant to work through - not taking them necessarily but ruling each out in turn. The cheapest is AA so obviously is the favoured one. The most expensive is denosumab which is an injection every 6 months for 2 years. It is a different mechanism but the two people I know who have had it have had no problems and their bone density is back to where it should be.

It is something to discuss in detail with your GP - and don't be bullied. You can get the guidelines online and stick to your guns, make sure you and he have read the small print properly for contraindications. If I already had reflux problems nothing would persuade me to take AA - but I'm lucky, my bone density hasn't changed.

di-bach profile image
di-bach in reply to PMRpro

Thanks for the information really helpful it gives me information I was unaware of thank you.

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