I went to see the doctor today to get my bone density scan results. I was ready for a discussion regarding not taking alendronic acid. I was pleasantly surprised. The first thing he did was to hand me a copy of the results from the hospital and then gave an explanation.
My results are: spine -1.1 and femoral neck -1.5 which the hospital say is very mild osteopenia. The report recommends that I carry on as I am with taking calcium and d3 and they want another scan in 12 months time. I skipped out of the surgery as I was so pleased.
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Koalajane
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The reason they are saying is that the greatest pred-related bone density loss is thought to occur in the first few months of treatment. The trouble is, far too many doctors in the UK won't give a scan in the first place and there are long waiting lists for scans anyway.
But if it is Gobowen (Oswestry) that answers my question - top notch orthopaedic hospital that!!
I presume that is because you are on the highest dose at the start. I have been on prednisolone now for nearly 2 years so hopefully the bone density won't get any worse. I have only been taking calcium supplements for about 3 months but have plenty in my diet and have been on vitamin d3 for 2 years as found to have vit d deficiency.
If it is Gobowen (Oswestry) saying that it does answer my question - top notch orthopaedic hospital that!! Hmmm - wonder if saying they recommend it would help others...
Yes the scan was done at Gobowen (a fantastic place)
The doctor who diagnosed PMR just gave me the AA and didn't tell me anything about it or offer a scan. It gave me heartburn and after a phone call from my doctor who told me not to take any more until a visit to the dentist I started researching it. You gave me good advice. In early October I went for blood test results (which were all good) and the doctor who gave me the results said I should have a bone density scan. I live in Shropshire and these are done at Gobowen.
We got all of them - thanks to Google earth!! Had to list all my jobs as well. Which you wold imagine might have been on my HMRC account but hey-ho. Just don't get to being pension age while living abroad...
No, Germany weren't half as nosy when OH applied for his pension from there. But then, we know the UK is special! Does Belgium ask you every couple of years to prove if you are still alive?
Wow, I had none of those difficulties. The pensions office (?) sent me a form (in book form), I answered what I could and just left the rest!! Still got my pension though.
Greetings jane, thanks for your very positive Post.
(First, Disclaimer! I am not a medic, only speaking from personal experience and my learning from others of You Lot on this excellent community forum):
I can relate, having had a similar experience with / results from with a recent DXA scan: 'Mild Osteopenia.. etc'. Like you, (and some others here, maybe), I was lectured and guilt-tripped by a previous GP about the Dire Perils of NOT taking AA simultaneous with Preds. Her quote: "Don't blame ME if you fall and break a hip in 10 years' time!". I'm (only? - ha!) 61 and have never even bruised a bone despite clanging-around on the squash court for many years, doing all sorts of hard physical work, regularly getting into Punch-ups etc (the last bit - only joking)
Your Post reminds me of comments from a few others of Us Lot here in the past about the Pros and Cons of taking AA in conjunction with the Preds. Yep, it seems to be the standard advice from many GPs: i.e. to ameliorate the (potentially serious, for some) bone-thinning effects of long-term steroid use. And, of course, more relevant to Ladies of a Certain Age who are more prone to Osteoporosis than men? Fair enough.
On the other hand: many of Us Lot (M and F) report a variety of nasty side-effects from taking AA that can potentially outweigh the supposed benefits. And (possibly more important?): without a past DXA score pre-PMR / Pred and reference-point (indicator) of historical bone mineral density, the typical Pred / AA precautionary advice seems to be very arbitrary.
In short:
Some of us might have naturally lower-end DXA scores (e.g. 'slightly Osteopenic') in the first place: either genetically or for all sorts of other reasons. For example: I have a 70-something-aged female sibling with Osteoporosis which, I'm convinced, was advanced by a combination of Gender, Stress, and poor diet. And... not helped by thinking she's still age 30, falling off a ladder and breaking 3 ribs last year - Ouch! For myself: although tall and slim-boned (despite having big hands and feet - oh well..!), I've escaped the ravages of Osteoporosis for now at least, and despite intuitively (and maybe defiantly?) having NOT taken my GP's stern advice to take AA 3 years ago when I started on my PMR / Pred journey. So far, so good.
My (amateur) Conclusion..?
Read between the lines with borderline DXA scan results - and in your overall health / family context if you have no family history of Osteoporosis or bone fractures (unless in exceptional circumstances). In the meantime: eat 'healthily' in PMR / Pred / bone health terms, don't worry unduly, and take things in your stride.
Your GP sounds good, and with a balanced opinion all round. Stick with him!
Hope this helps to boost your well-deserved optimism!
Thank you Uncle Mark. You have such a delightful way of delivering information. You make it all simple and bearable. It doesn’t matter how scary the subject we can rely on you to lighten it. THANK YOU SO MUCH. I only wish you had delivered my babies xxxx lol.
Your "mild osteopenia" is actually a perfectly normal reading for someone past middle age. I assume if you have PMR you are in that demographic? Who can maintain the bone density of a thirty year old for the last two thirds of their life? What we can do is slow down the inevitable bone thinning so the bones last us the rest of our lives.
Well you are lucky having a Dr who recognised the need to take AA. I have been on Pred for nearly two years and despite having paid out a lot of money to get " the best " treatment from a Rheumatologist . I was consistently told that I did not need AA despite having no tests or scans.
I took matters into my own hands and went back to my GP who asked for a Dexa scan which guess what has revealed I have Osteoporosis in my spine, hip and femur.
I am now on AA plus calcium and vitamin D. ( so far easy to take an no side effects .
I will now stick to the NHS which in my area is very good.
Pleased for you too! I was prescribed Adcal + vit D from first day of Pred. 3 months later GP advised AA....took 1 dose, upset me so much, refused further tablets till got a dexascan. That happened about 3 month later, and showed extremely strong bones....no need for AA.
Such a shame that doctors don't offer the dexascan first before prescribing alendronic acid. Why take it if you don't need it. Well done you did the right thing.
I'm happy for you. I've been taking adcal since I started on the pred but haven't had a scan yet in spite of have taken pred since April 2017 . I'm due for one next week though after waiting nearly 6 months for the appointment
I started my pred the same time as you. I was already on vit d3 as was diagnosed with vit d deficiency just before my PMR diagnosis. I wasn't offered calcium until yesterday and now get a combined tablet. My doctor referred me for my dexascan in October and said I wouldn't get an appointment until after Christmas but I was lucky and got one 6 weeks later and got my results yesterday, hope your results are as good as mine.
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