Hi everyone, bit upset to say the least, had my first dexascan yesterday and the technician said that my 'numbers' were showing that i am at risk of osteoporosis.
And then muttered under his breath that gp will prob want to put me on alendronic acid. which ive heard has horrible side effects.
when i told my lovely son he rushed out and bought me 3 boxes of Osteocare calcium, magnesium, vitamin d, zinc tablets.
I dont know what to do. should i take these over the counter pills and then wait to see what the GP says when she gets the hospital report.
can osteoporosis be reversed or stopped in its tracks?
thanks.
PS tapering from 15mg Pred, now down to 12.5. its been a struggle for 5 months.
"my 'numbers' were showing that i am at risk of osteoporosis"
Being "at risk" is a rather vague comment! Wait and see what the numbers are - and then you can tell which approach will be required. In the meantime - take your son's pressie.
Developing osteoporosis with pred is not inevitable and it very much depends where you start. So when you get the results - tell us what they are.
yes but i refused it. i consume a lot of milk, cheese and yoghurt and assumed that would be enough. my body is averse to any medication. i get awful side effects from everything it seems.
so if i do take the adcal would that mean that i wouldn't need the alendronic?
You may still need a bisphosphonate such as Alendronic Acid but everyone on steroids are recommended vitamin D with calcium to help deterioration of bone density. Sadly you cannot get enough vitamin D from food. You need sunshine.
Unfortunately, we who are older cannot even get it from the sun! As my osteoporosis specialist announced when I pointed out that I was surprised my bloods showed low vitamin D. I live in a sunny clime and had spent everyday during the summer, prior to getting PMR, doing 20 minutes in the sun (what is recommended).The vitamin D supplement is a must once you are on steroids, if not before.
No side effects, unless you take too much (Don't take more than is prescribed)
Also remember calcium absorption reduced on higher doses of pred.
Hi there. Some good advice and help already offered, but I just wanted to add that I was diagnosed with PMR just over 2yrs ago and a dexa scan (demanded by myself before I'd consider taking biphosphonates) showed that since starting pred, my osteopenia had now become quite significant osteoporosis. I felt I had little choice but to take the biphosphonates to ward off further serious deterioration and have now been taking Alendronic Acid for 2yrs. I've experienced little if no side effects but still do not feel at all comfortable taking this medication. At my next rheumatologist consultation I'm going to discuss ceasing them altogether. I've recently discovered that you have to have a break from them after 5yrs anyway because they actually start to cause damage to your bones!! Can't see the point of taking something that eventually doesn't really help anyway. I'd prefer to try to improve my bone health through diet, exercise and calcium and Vit. D supplements. I currently take Calci-D, a prescription only dose.
Also important to mention that if on calcium and vitamin D3, it's a good idea to take vitamin K2.....this ensures that the calcium is actually deposited in the bones and not in the arteries or veins!!
There's no doubt that biphosphonates are not without their issues so I would always recommend a reliable interpretation of your dexa scan before you make any decision. Its fair to say that occasionally, the biphosphonates are probably the better option though.
Oh!..... I think I remember you having to tell me that once before now I come to think of it. I'd completely forgotten!! ....feeling rather stupid now!!🙄
I replied too, for the exact reason Mrs Nails says, someone else may benefit. And Hidden may come back. Who knows why they left? Maybe they pressed a wrong button, left the forum by mistake instead of just logging off?
I started on AA and Calcichew D3 as soon as I was prescribed 15mg Prednisolone to deal with PMR. About a month after starting AA I developed joint pain, mainly in the hands (PIL states this is very common, 1 in 10). Dr switched me to Risedronate 35mg and the joint paid vanished after a few weeks. (PIL states joint pain 1 in 100).I’m currently on a 7.5 to 7mg DSNS taper but still take the bone saving meds, and will do so until I’m off Pred. (Well I hope I get off Pred eventually).
PS I had a Dexa scan 6 months in and the ‘numbers’ were normal.
I hope you are still there "Hidden". If you get plenty of calcium in your diet I think your best bet is to supplement magnesium (and this can be done other ways besides pills, like a spray or an Epsom salts bath) as well as Vitamin D and also Vitamin K2 (not K1). This latter sends calcium to the bones, which Vitamin D doesn't do. Vitamin D enables us to absorb calcium, but it is other micronutrients, like magnesium and K2, which make it useful to the bones.
This may sound really stupid but I.ve not heard of K2 before......Should I consider taking this then. I take calcium & vit D and are now on 8mg pred and reducing very very slowly from 10 mg 4 months ago? Looking to get to 7mg.
I hadn't heard of it either until I read about it on this forum. Other's more knowledgeable may be able to explain it more comprehensively, but my understanding is that the Vitamin K2 enables the calcium to be deposited more readily where it should be.....in the bones......rather than in the blood vessels.....where it can cause a build up of a 'plaque' type substance that could eventually cause blockages in blood vessels that in turn could lead to heart issues and strokes. (Worst case scenario so don't panic!)Not one of my medical professionals mentioned this......nor did they tell me that I shouldn't eat spinach, chocolate, beetroot or anything containing oxilates at the same time as I take the calcium supplement, as the oxilates inhibit the absorption of calcium! I eat a lot of spinach and beetroot for their other health properties and also moderate amounts of dark chocolate!
Frustrating to feel I had to chance upon this information but thank goodness I did!
You're quite right....which is why it's so important we do our research to ensure we're working within safe and recommended parameters. Thankyou for pointing that out.
And Vit K1 and Vit K2 are different things - like the B vitamin group. Vit K1 (and to some extent Vit K2) are not advised for patients on anticoagulant therapies, especially warfarin. It's quite complex really ...
Vitamin K2 is unlikely to become toxic. it is not like some of the other vitamins that way. It is also unlikely we will ever take too much as the modern diet is deficient in it and we can be sensible with our supplements! Please note its function in the body is not the same as Vitamin K1. Although the caution regarding taking when on bloodthinner stands - I don't think there is as much risk with K2, but there isn't a lot of information available.
I believe that taking a Vitamin K2 supplement was indeed one of the most important things which helped me reverse my bone thinning and actually improve my t-score. I found out about it because a friend mentioned it to me when I was given a diagnosis (incorrect as it happens) of osteoporosis and was desperately seeking advice from all quarters. I read a book, Vitamin K2 and the Calcium Paradox by Kate Rheaume-Bleue. And this article is a reasonably good introduction:
I take a combined K2,D3 capsule daily at the same time as my calcium. It's available OTC although perhaps not everywhere. My t scores have also improved and my assessed risk of fracture reduced which, at 83, is a relief !
May be speak to your GP? I have taken AA and Adcal for 2.5 years and I am ok. I think weight bearing exercise can help oesteoporosis - I do Pilates on Zoom at the moment - Good Luck
Just a PS I often have to leave but return daily at some point and read mist of the posts for any gems of info etc. Kendrew I found your post very informative. I was refused a dexa scan but could get one privately. All info really helpful.
If your on steroids long term it's probably a good idea to have one, just to establish the state of your bone health. Consistent steroid use can result in depletion of bone density so it's sensible to be sure damage isn't being done and osteoporosis isn't developing.
I would love to have one but that will not happen. You cannot even get in to see a GP....thank goodness I am in good health and have everyone on the forum for help.
I’ve been on Pred 16 months & had a dexa scan last year where they said I had osteopenia. When I asked my gp what my bone density was they didn’t know!😲
So far I’ve had no probs with the AA, but am very aware of what to look out for should anything develop. I long for thr day to be off all these meds.
Don't jump the gun, you will be acting on your own anxiety rather than making a rational decision based on credible information. I take Alendronic acid and have not had any side effects, My Mother and Aunt also take it and have not reported any negative effects so this requires a perspective, some people are allergic to fresh air, someone has to win the lottery or it wouldn't exist even if it is one in ten Million.
Hi there,have to say not everyone has side effects with A A,I've took it for 4 years and no side effects so mayb try it first and see how it goes you can always stop taking it ,take care.x
I was diagnosed with osteoporosis about 5 years before my PMR diagnosis. My doc put me on Fosamax, but only for two years because of potential side effects. He also had me take Citracal daily. After two years, my osteoporosis was worse. He then switched me to Prolia, which is an injection given twice a year. My last dexa screening showed improvement to osteopenia. I’m now into my second year with PMR, and am anxious to see where I’m at after my next screening due this fall. I’m just letting you know another possible option!
I personally think exercise is one of the most important components for strong bones. Even though I don't work out strenuously anymore, I get in an hour of walking a day, broken up into three or four time periods. At 74, and after 3 years on pred, my scans show no problems at all.
I’m going to pull the relevant comments out of this Post on Bone Health & put them together to put in FAQ as this post will get ‘lost’ in time because there is no relevant title which is what is needed for a Search 🔍
But there has been some good info written & l will attribute to each Person 😉
Hello! I have had many bone density scans and was on Evista due to Osteopenia for couple years, low dose, daily . Then my physician took me off the drug due to age and activity (claiming it’s for people with osteoporosis and in 70+, due to risk of falling.). Then couple years later, another physician put me on Alendronate Sodium, once week, due to slight decrease in bone density exam. It is my understanding that one takes it for 3-5 years and then they go another drug route or re-evaluate continuing…this year is last year of taking it. I have NOT had any issues taking it. I as of last year am now at Osteoporosis stage per bone density exam. Mother has Osteoporosis.
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