I’m 61, male, and was on pred for 30 months to treat GCA and PMR, finally stopping in January this year but had to restart at 15mg in July, tapering and now down to 8
I had a DEXA in August that gave a T score of -3.5 score compared to -3.2 three years ago. It’s said said to be between 1and 2 in hips and arms but I can’t recall the exact results
I’m keen to avoid alendronic acid and manage my health with diet and exercise and wonder if anyone can direct me information about a meatless way to do so
I feel in good health so am considering gentle running and weight lifting, not the extent that I feel the burn, but a little more intensive than walking Is it a case of just trying it and seeing how I get on?
Any comments gratefully received. I dipped into this community back in 2018 and greatly appreciated the support
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Brizzleben
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I am a veggie and after pmr diagnosis really tried to improve my diet as I had become anemic along with every thing else. Was advised to add some meat to my diet but just could not face it so I upped my intake of kale, broccoli, tofu, spinach, yoghurt, soya beans etc., even dark chocolate is a good source of iron! Best wishes
I think with a t-score of -3.5 you are really rather past the stage of improving bone density with anything other than medication. I would also be a bit surprised if a doctor felt alendronic acid was enough - it really is expected to preserve the existing bone density, it rarely would improve bone density by the sort of amount you require to get to even osteopenia, never mind close to normal bone density.
In dietary terms, if you eat dairy then the lack of meat is not so critical. This is a detailed analysis of the various factors in bone health:
They talk about vit D fortified foods - but in the UK foods are rarely fortified as in the USA where orange juice and milk are often fortified as well as breakfast cereals so a vit D supplement is preferable.
There is literature studying the actual efficacy of bisphosphonates and they really don't come off very well. e.g. ti.ubc.ca/2012/01/24/a-syst...
I did not have osteoporosis, but fairly advanced "osteopenia" (-2) and with nutrition and appropriage exercise I improved my t-score in one year although still on a dose of pred above 5 mg for half that year.
I have read of people with osteoporosis who have followed a similar program and have improved their bone density. I believe if a person has not fractured it is definitely worth trying this method as the DXA scan does not measure bone strength.
In this thread you will find comments by a gentleman called Aristotle13 . If you look past the minor disagreements and misunderstandings in the thread you will find his comments of interest and pertinent to your situation:
Thank you PMRpro. That’s good to know, if sobering. My GP said she’d get advice about alternatives to AA, which does sound like something I’d like to avoid if I can.
Diet alone MIGHT prevent further loss of bone density - but it is something that will take some time to establish, during which it may have deteriorated even further because of the effect of . There are downsides to the bone protection drugs but they are now far better known so the guidelines for their use have been modified. The company that developed and marketed Fosamax for widespread use in the early 2000s made claims about its longterm use that have turned out to be far from reality once it was in mass use. That doesn't automatically make it a bad drug.
Bone building is not an overnight process - even with medication. Relying on diet and exercise alone is even slower. Particularly when you have PMR and are on pred. The risks that those factors introduce must also always be borne in mind.
The next bisphosphonate "on the list" in the UK is usually risendronate which generally has fewer gastric effects. Then comes zolendronate - usually given as an infusion once a year. Then there are non-bisphosphonate options, Prolia/denosumab and Forteo/teriparatide, which really are aimed at the more severe end of the osteoporosis range. They too have serious effects and their use needs close monitoring. The problem with denosumab is that when it has been used to build bone density, stopping it altogether results in a rapid reversal of the process and loss of the bone density that has been developed. Either it is continued or an ordinary bisphosphonate used instead to maintain the bone density that has developed. It is, like everything, a balance that must be achieved.
First time I have ever disagreed with PMR PRO. I think you CAN improve the score. avoid AA. if you can use a weight vest do weights keep on being a vegetarian lots of calcium in those vegetables take K2M7. I have a 3.5 spine... way worse than 2 years earlier which was 2.7 but I had held it at bay -2.7 2 years before that doing TAP and HEEL drops. Wait! next time I have my DEXA scan I will report back. Hope to have improved my score!!
I didn't say you can't improve the score - but I do say that it is unlikely that a spinal t-score of -3.5 can be improved to a bone density that reduces the risk of spinal fractures significantly. And as Sophiestree points out, a fall from -2.7 to -3.5 is a massive drop in two years.
Exercise and diet would and do play a massive role in preventing deterioration, it CAN improve density somewhat but it all depends what your baseline is and the rest of your physical condition. If the baseline is extremely low then the effort and time required to get it back to even osteopenia may not be possible before fractures have occured. Having experienced the effect even a small fall can have on an osteoporitic spine at a t-score of -3.2, even I would agree that there is a role for bisphosphonates. Used in line with current guidance, the benefits probably DO outweigh the risks. Spinal fractures are very very painful and can cause tremendous restrictions on mobility and lifestyle, not just for the person concerned but for their partner.
Hi there My GP was advised to stick me on AA after Dexa scan showed I had osteopenia in my lumbar spine. Thankfully I did my research online and felt confident to decline AA.
I'm veggie too and there's absolutely no problem with that. Plenty of calcium in plain yoghurt and tofu. And calcium is just one of the many components required! All very complex but interesting...
I am following the SOB exercise programme too and also invested in the Marodyne LiV machine livmd.co.uk/
Also bought a weighted jacket.
Haven't had another Dexa yet but there is no way I'll take AA anyway! Read SOB to understand how it "works " (or doesn't work!) Good luck!
have you been taking vitamin D3 supplement? Also some evidence K2 is important. You can get capsules of D3 and K2 they are in oil (important that vit D always taken with oil as it is oil soluble not water soluble). Also a little evidence that boron is needed...you could get a boost from a few prunes a day. Make sure you get extra dietary calcium - prednisone reduces gut absorption of everything. You need a great diet PLUS. This might help stop further deterioration and we can all hope for improvement. Good luck!
Have a look at the Royal Osteoporosis Society website to check your dietary calcium and vitamin D intakes. theros.org.uk With those numbers, I hope you are on prescribed supplements.
Best wishes.
Hi again!I do think you have to read everything with a critical eye as Heron details below and find what suits you best. It's very complicated but the more you read the more understanding you gain of course! So many interesting links on this thread alone!Good luck!
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