Dexa scan done
Posted , 9 users are following.
I have had the scan done a while ago and have the results today, some bone density loss, I guess that's expected. Have been prescribed Fosamax,
I want to thank Eileen very much for alerting me to know that I should have one done.
I didn't know in the early days of PMR that the scan was required. My GP at the time hadn't mentioned that. I did get a lovely new GP who ordered the test when I asked for it.
But I am writing this to say a big thanks to everyone here who has been so very helpful!
0 likes, 18 replies
EileenH margot34956
Posted
What were the results, do you know? You can have some bone density loss without having osteoporosis or needing to take bisphosphonates. I have "some" density loss but it is well within normal and doesn't require any treatment at present.
margot34956 EileenH
Posted
I have been taking vitamin d and yoghurt since I learned prednisone can reduce the calcium intake
EileenH margot34956
Posted
I'd say that was a level that meant the first place to start was calcium/vit D supplements, vit K2 (a la Anhaga) and the right sort of exercise: weight bearing, possibly with a weighted vest. As Anhaga shows - that can be very effective.
margot34956 EileenH
Posted
thank you for your advice.
Do you know if CRP levels going up are a normal progression of PMR?
mine have gone up and that is what my G.P said. Also said there is no need for concern.
Thanks
EileenH margot34956
Posted
Once you are on pred your CRP levels should go DOWN, not up. If they start to go up then that may be a sign the pred dose you are on is not enough to manage the inflammation - it certainly isn't a normal progression of PMR that is supposed to be being treated using pred. It would be if you weren't on pred.
I suppose it depends on your point of view - if my CRP were rising I would be concerned. It can be raised for other reasons, such as a cold or chest infection in particular, but if all you have is PMR and are on pred, no, it SHOULDN'T be rising and if it is, it IS a cause for concern. It needs to be checked in a week or so to see if it is still rising - and if it is, then you need a higher dose. If you get a return of symptoms in the meantime - you probably need a higher dose.
There is another lady on the forums whose doctor said "your CRP has improved" - when it was rising. The lady concerned is very aware and questioned what the doctor meant since it had actually gone up a lot relatively speaking. "Oh, it's only gone up a bit..." No, it hadn't.
Unfortunately we need to have our wits about us - since some doctors appear not to!
margot34956 EileenH
Posted
It is hard to know if symptoms return as I have never been pain free. The pain has not increased.
rachel24455 margot34956
Posted
Lucky you! Despite breaking my arm 8 weeks ago, my surgery have refused me a DEXA scan on the grounds that I'm on Alendronic Acid and vit d anyway.
as I'm only 52 and have now been on pred for 18mths should I insist?
im concerned I don't have a base line for anything!
EileenH rachel24455
Posted
Anhaga rachel24455
Posted
I don't think it's too late to insist on the scan.. Others in your position have discovered after a scan that they never needed to be on the AA in the first place and discontinued taking it.
margot34956 rachel24455
Posted
Yes Rachel, you should absolutely insist. I am so glad that I did change Doctors and asked my new G.P, and I only did that because Eileen said to do that.
I wouldn't have known otherwise and not had the test and not been aware to take vit d and calcium [yoghurt]
Please do insist!
Anhaga margot34956
Posted
,Most people inevitably have some bone loss as they age, it's a normal part of aging. Provided you maintain your bone density through diet and exercise (and supplements, especially when ill as with PMR and on pred) you shouldn't need any osteoporosis medications. Please let us know what your t-score is. Don't agree to any drugs until you know. My doctor told me I had osteoporosis but she was mistaken. She didn't have the complete report which includes the t-score. In fact I have what's called osteopenia, or, more accurately, low bone mass. It is not recommended to take OP meds for this level of bone thinning. It took several months before I was able to find out my t-score but I had already decided the drugs were not for me. I've improved that t-score, without any drugs, from -2 to, last reading, -1.6 and drugs are no longer being recommended to me. No matter what your t-score is, if you've never had a "fragility" fracture you should really consider only natural means to maintain your bones. There will be no side effects, except overall improved health!
margot34956 Anhaga
Posted
Well this is interesting anhaga, because my score is not that bad, after reading yours, thanks for including your score, my T-score is -1.6 and Z-score is -0.6. I don't know what a z score is
I have been taking Vit d and eating lots of youghurt
Anhaga margot34956
Posted
Z-score is one which compares you with age-matched group. i don't think it's particularly useful, I wasn't even given it. I suspect but will never know that if I'd been given a DXA scan before or just after starting pred my score would have shown as closer to what it is now. I did have a number of serious but hidden side effects so quite possibly bone thinning was one of them, but I'll never know for sure. All I know is that after I started a more rigorous protocol to care for my bones the score improved even though for half of the intervening year between scans I was still at a pred dose above 5 mg.
margot34956 Anhaga
Posted
Thanks Anhaga, that is helpful. I don't need to take too much notice of the z score.
It is a shame you weren't given a DXA before. I am thinking the same thing, this is my first one and it may have already been a little low too.
Anhaga margot34956
Posted
Yoghurt has been shown to be a really good way to get your calcium. Apparently it's in a form that the body can absorb particularly effectively. Consider adding a Vitamin K2 supplement, unless your diet includes products from grass fed (never grain fed) animals.
margot34956 Anhaga
Posted
I will look for a supplement, thanks for this advice.
Hope you are doing O.k