Second DEXA scan: I have had PMR for 3 years and... - PMRGCAuk

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Second DEXA scan

chubbycheeks profile image
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I have had PMR for 3 years and taking Pred, I recently had a second DEXA scan and I have been advised by my GP that my spine and hips have gone from -2.5 to -2.6 and he wants to refer me to a Rheumy. I have a Barretts Oesaphagus and history of Massive Pulmonary Emboli, the last one being nearly fatal ! Apparently that means he cannot prescribe number one or number two on the list of drugs and so I need to see a Consultant. I live in the UK is anyone aware of a suitable drug that I could possibly take that doesn't have horrific side effects that I could discuss with the Consultant ? Many thanks

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chubbycheeks profile image
chubbycheeks
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Celtic profile image
CelticPMRGCAuk volunteer

With your past history of quite serious health problems, I think you need an expert opinion on the best bone protection medication for you - there are many. You are only just into the osteoporosis stage.

If you are in or approaching the very low doses of Pred, then if the bone density reduction has occurred as a side effect of Pred, that side effect should lessen the lower you get.

I assume you have been taking a calcium + Vit D supplement for added bone protection whilst on Pred?

Whilst waiting for your rheumy appointment to come through, perhaps you could contact the National Osteoporosis Society helpline on 0845 4500230, email nurses@nos.org.uk for their opinion on which medication is best for you. Lots of good luck wishes.

I'm into my third year of PMR/GCA and bone density decreased during that time. Although only in the osteopenia range I broke my hip after a gentle fall last year. My rheumatologist prescribed Forteo. I'm scheduled for another scan and this should indicate efficacy. I know others who take Prolia as an injection every 6 months. These 2 drugs seem to be the heavy hitters in my neck of the woods.

PMRpro profile image
PMRproAmbassador

I imagine it possibly means you can't have any of the drugs classified as bisphosphonates - but congratulations on having a GP who reads the contraindications because there have been plenty of people who have been given bisphosphonates anyway. However - I'm surprised he's panicking at such a tiny change as the dexascan results aren't accurate enough to compare results so exactly even if they were done onthe same machine (that is essential)

Prolia counts as a bisphosphonate but I don't think it also has the gastric problems since it is injected, twice yearly. I know a couple of people who have been on Prolia (denosumab) with no problems at all.

Forteo is a totally different mechanism and also works to rebuild spinal bone, which the others don't necessarily do. It involves a daily subcutaneous injection using a pen-type device which must be kept refrigerated. You can only use it for a total of 2 years during your lifetime.

In terms of the Forteo you might find this of interest - bearing in mind it is from the manufacturers rather than an independent source:

forteo.com/how-to-inject-fo...

And as Celtic has suggested - contact the National Osteoporosis Society helpline where they will talk you through all the options - I understand it is a brilliant resource.

chubbycheeks profile image
chubbycheeks

Many thanks for your advice. I had my first DEXA scan after being on Pred for 3 months and so OP is not due to Pred, currently on 3mg. I will have a cuppa later and digest all the info and advice you have kindly offered.

paddyfields profile image
paddyfields

How long before the Barrett's diagnosis were you suffering from the acid reflux? I am I increasingly having bouts of acid reflux and my doctor recommended omeprazole but I declined because I am already on so many different tablets. I have not noticed any particular relationship between the acid reflux and the ibandronic acid tablet I take once a month. However, my father died of cancer of the oesophagus with a history of duodenal ulcer and acid indigestion so I'm wondering if I should take the omeprazole

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