I haven't posted for a while but have been following the forum.
As a quick recap I am now 48 years old, I was diagnosed with PMR in January 2022 following a blood test that showed raised ESR and CRP markers. I was fairly active prior to the symptoms starting, I first started experiencing symptoms in my hips and surrounding areas and the symptoms gradually got worse extended into my neck, shoulders and then elbows. By the end of Dec 2021 I was in significant pain and struggling to move. Following a blood test in January 2022 my doctor diagnosed potential PMR and put me on 20mg of Prednisolone. Within 2-3 days there was a major improvement in symptoms and I reduced to 15mg in early Feb 2022. Since then I have continued to taper, a few bumps along the way but I am now down to 3.5mg and planning to drop to 3mg in the next few days.
I saw Rod Hughes around 12 months ago as I had hit a bit of a brick wall with the taper, he got me to up the dose for 2 months as a bit of a reset and I have managed to taper fairly well since then.
A while back my GP put me on the list for a DEXA scan, it has taken a while to happen but I now have the results and they show osteopenia. My GP said he could treat but on the basis I have BUPA cover we agreed I would seek guidance from Rod Hughes. However, when I contacted BUPA last week they advised this would not be covered (something about being preventative rather than a specific issue, I have asked for written confirmation of the response). I can afford to fund a private consultation if needed so wondered what the wise folk on this forum think ?
My results were are follows: -
AP Spine - BMD = 0.979 g/cm2, T-Score -2.0 and Z-Score -1.9
The GP put those numbers into a risk calculator and for Osteoporotic failure I was on the border of Lifestyle Advice and treat and for Hip Fracture I was in the Consider Specialist Referral and Treat band.
Any feedback and advice welcome.
Thanks
Matt
Written by
mpartrid
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There is loads of information on the subject of bone health in the FAQs - and although with your readings you are in the osteopenia range…it doesn’t mean it will automatically progress to osteoporosis.
Yes, it’s just that the Mk-7 seems to be the preferred option for bone health as it’s requires a smaller daily dose compared to the Mk-4… but sure all are fine. But there is plenty of info online if you want to find out more.
Do you take Vitamin D and K2? My scores were slightly worse than yours at that age, but I am female and so there are other factors to take into account with that in terms of early menopause etc.
If you are happy to pay, have you considered a REMS scan osteoscanuk.com/
It is done by a spinal surgeon and a different way of measuring bones with something called an eco scanner. I had one 2 years ago and found him to be really helpful. I am having my next one in December so it will be interesting to see if there are any changes.
He travels around the country on specific days or you can travel to Daventry where his clinic is.
You might want to contact theros.org.uk or look on the bones forum on Healthunlocked.
As a younger male your osteopenia is more significant than an identical risk value in someone my age, 71. If you remain on steroids your lifetime fracture risk is greater. Male hormonal risk factors need to be checked.
I would commend for your consideration this super new guideline from Oz., pages 1-13 is the summary. The flow chart on page 13 is particularly readable and is relevant to yourself.
Most associations aand medical colleges worldwide are updating things at the moment due to new treatments becoming available.
He seemed good, far better than the rheumatologist I saw previously who seemed to have an issue with the fact I had already been diagnosed. Rob went through my history, was happy with the diagnosis and we jointly agreed a revised tapering plan
If necessary (UK only), check out the Independent Sector Complaints Adjudication Service (ISCAS) website for advice about resolving disputes with BUPA or similar private healthcare companies:
I was told by an osteoporosis nurse specialising in osteoporosis physio that osteopenia doesn't need treating just keeping an eye on. Having said that I will tell you how I get on in a couple of weeks as have aDEXA booked having broken a hip that was osteopenic 2 years ago
I agree that low bone mass, aka osteopenia, is treatable. However, if not already done, you do need to be tested for other "secondary causes of osteoporosis", especially with your younger age, being male, and even more if you've been living a reasonably active life and eating healthily.
You might find my story interesting as there could be some suggestions for activities or supplements that could help. Good luck!
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