Vitamin Regimen - PMR
Posted , 18 users are following.
I know that calcium supplements are essential, especially during treatment with Prednisone.
I am am curious what other supplements people are taking and whether or not you believe they have helped.
0 likes, 78 replies
Daniel1143 gilman
Posted
Nothing else has worked. And I have tried everything including voodoo
whitefishbay gilman
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sheila28713 whitefishbay
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MrsO-UK_Surrey whitefishbay
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whitefishbay MrsO-UK_Surrey
Posted
I have not had a DEXA bone density scan in fact I am waiting to see a rheumatologist (my previous one cancelled my long awaited diagnosis apt). I will definitely ask my new rheumy @ this. I will buy calcium + vit D supplements also aim to eat lots of calcium in my diet and also walk. Thanks so much for the advice.
MrsO-UK_Surrey whitefishbay
Posted
If a DEXA scan shows that we have bone thinning, then of course treatment with bisphosphonates or similar is required but only then and not before.
Rather than wait for your rheumy appointment, can you not talk to your GP about the recommendations for a DEXA scan.....and sooner rather than later (I'n ot sure how long you've been on Pred)??
At one stage my bones moved slightly into Osteopenia (the stage before Osteoporosis) but no treatment was suggested or thought necesssary at the time, and since coming off steroids, the density has moved into the completely normal range again.
whitefishbay MrsO-UK_Surrey
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MrsO-UK_Surrey whitefishbay
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EileenH whitefishbay
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I've taken calcium and vit D faithfully every day - and 4 weeks of alendronic acid at the start until I read up about it and discussed it with my then GP. He too was of the opinion it was a good idea when you were showing a fall in bone density while taking pred but otherwise watchful waiting was a far better option - because bisphosphonates have not yet been shown to be totally innocent when given to otherwise healthy patients longterm "just in case". They have side effects too, some of them very nasty.
On another forum there is one lady who developed shinsplints after 2 years on AA and one who has bilateral fractured femurs (both thigh bones broken, no fall involved, it just happened) and the specialist is positive it is due to the 18 months of alendronic acid she had been on. Many dentists will not work on patients on or who have been taking AA.
faye______00403 EileenH
Posted
doctor put me on it but not just in case. I have osteoporosis.
Since I'm 79 yo don't want to risk back fractures at this
age. This trip down senior lane is getting more complicated
all the time....
ptolemy faye______00403
Posted
I do believe that AA was recommended for vulnerable people eg over 65s as a matter of course in the Rheumy Guidelines. I am not sure if that has been changed or not. If I had been offered AA when I first got PMR I would have taken it as I would not have known to question it.
faye______00403 ptolemy
Posted
Just because you're over 65? Osteopenia? Can't see that.
I'm not medically trained but can't see giving this med unless
dexa was done and definitely showed osteoporosis. Pays
to stay on top of your health issues if you possibly can.
Never stop asking questions........
EileenH faye______00403
Posted
The company that developed Fosamax (the original alendronic acid) did a "study" where they gave doctors the not-dexascan things that I think Boots and other quacks use to offer "bone-density heel assessments" which are totally useless. They purported to show that giving Fosamax prevented bone density loss in older patients and claimed it was perfectly safe. So you could give it to your older ladies (in particular) and it would protect them from having hip fractures - which are potentially very risky. The doctors to whom this was preached were easily convinced so when they have patients on long-term steroid it is automatically handed out as "preventative medicine".
In the guidelines it says to automatically hand out calcium and vit D and send the patient for a dexascan. Patients who are "likely" to have low bone density (post-menopausal and over 65) don't need the dexascan and should be given alendronic acid, as should people who fail the dexascan criteria. Which is tripe - I know several older ladies (late 70s, in their 80s) whose bone density is fine. There is also no direct correlation between low bone density and fractures - but that is also a long story so I'll not go there.
The only reliable way is do the dexascan and review the situation. It's like statins - brilliant marketing...
ptolemy faye______00403
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faye______00403 EileenH
Posted
my sister couldn't take the Fossamax and wound up with 7 fractures
in her back........hard to know what to do. I guess you find a doctor
you trust and go with his judgment. Let's face it....it's all a
crap shoot!
Tastyron EileenH
Posted
faye______00403 Tastyron
Posted
have the equipment or not the medics that order it? Your
call but I wouldn't take it without the dexa. Blows me away
how many different opinions the doctors have from practice
to practice. Makes you wonder where these people go
to medical school.
Tastyron faye______00403
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EileenH Tastyron
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Couldn't agree more about the reluctance to check you need it first and handing out like sweeties.
My comment about lack of correlation is that many people with low bone density don't have fractures, others with "perfect" bone density do. The line where you go from osteopenia into osteoporosis was set arbitrarily - there were no studies I know of that it was based on. The incidence of fatal hip fractures was already falling when AA was introduced and there are a LOT of other things that are even more important and which don't have any side effects. Yes a form of it has been in use for 50 years - in a very small population of patients with Paget's disease I think. So a lot of doctors say it is absolutely safe on that basis. Except it was a different substance used in a very different illness - and you only ever find out the REAL rate of side effects when something is used for a long time in a lot of people, which isn't the case during clinical trials.