PNR-Prednisone-osteoporosis

Don't you have to love them? If you are on Prolia the bone density problem is shifted. A member of the forums (in hibernation currently) has been on Prolia for 3+ years and her bone density is now classified as "normal". She is on lifetime pred at somewhere between 5 and 7.5mg (can't remember) because she has adrenal insufficiency. 

If you are small that is immediately a risk factor. This is the main reason we should all have dexascans immediately - people with very low levels almost certainly have a pre-history. And it is unfair to blame pred - but that's what they do immediately if they didn't check. 

You're in Australia - have you been a slip, slap, slop lady avoiding the midday sun? Low vit D means any calcium isn't being utilised anyway. What other medications are you on? PPIs lead to low bone density all on their own - but do the doctors have a fit about it? Nooooo.....

Hi Eileen, and thank you for coming in. I’ve never been one that’s needed to take any long term meds, I’ve been quite healthy and fit for an old wee lass, albeit when I do get something it usually requires surgery rather than meds. The endometriosis started at the age of 26 with surgery( partial hysto) then the prolonged medication, and continued on and off throughout my life however after that  initial 2plus years of Danazol I opted for laser removal when it flared rather than more meds or a full hysterectomy. Low BP required extra salt at times, ( that was hard to give up) and being small and never gaining weight I ate what I wanted ( so was hard to give up sugar, carbs and wheat). Only had to take the occasional anti’b and never suffered from allergies or recurring colds and flu until the sinus infection last year at 61 which required a double course of anti’bs, double course of steroids then surgery, however I bounced out of that like a trouper and recovered well. I did pick up a staff infection in the cannula site when they blew up a vein in the hospital and then a blood clot in the same area, requiring more anti’bs. The PMR/GCA diagnosis 6 months ago was quite the slap in the face and this on top sent me straight for naughty food and a pity party yesterday but I’m back in grateful land now that it isn’t anything worse. I’m pleased to hear that the bone density can be improved, I have my sisters words echoing in my ears. She was a nurse and was always telling my little frail elderly Mum to “look down when you walk, if you fall and break something that will be the end of you”. I love her but she’s not the cheeriest sole! If I need medical advice she’s great, if I want family sympathy I go to my other sister. 😌

She does sound very PRACTICAL and a realist though!!! Sort of thing I'd say if I weren't careful...

Forteo is teriparatide, a hormone treatment rather than a bisphosphonate.  Prolia is denosumab with the same, although in some ways stronger, action as the older bisphosphonates like alendronic acid.  This is why you need to exercise care with dental surgery.  Forteo should be available in Australia but probably not something you really want to consider anyway.  The Australian site I looked at says it can only be taken for 18 months which is even less than the two years permitted elsewhere (possibility of osteosarcoma based on lab tests with rats).  Denosumab disables the bone remodelling cells, the osteoclasts, whereas teriparatide encourages the bone building cells, the osteoblasts.

Australian site osteoporosis dot org dot au slash treatment hyphen options

Oh she is all that and more, that's one of the things I love about her. Being 4 years older than me and an ex-recovery room nurse, she has a wealth of knowledge that is invaluable and she's usually spot on. I also meant to answer the other part of your previous post. I've only really slip, slop, slapped with UV protection for half my life. Back in my early adult life  the thing was to go to the beach, slip slop slap on the baby oil, and lay in the sun and fry like a roasted chicken in the oven. The whole sun cancer thing wasn't part of my youth. Back then I would have been overexposed to Vitamin D, I loved the sun, the beach, the water. Still do, just these days its more our  back yard pool and of course a fair bit of sunscreen.     

Thank you so much Anhaga, thats great info. I will google that now. Oh, and make that dental appointment while I think of it. 

And take Vitamin K2 along with your D and calcium!  Good Luck.  Btw, the biggest risk for fracture isn't bone density, it's falling.  So keep your sense of balance and try to keep your muscles strong, 

Yes, thank you. I have been taking all of those, obviously not enough though.  And this all came about because although I've never had an injury up till now, I managed to do a swan dive into my sunken rose garden whilst trimming the standard roses 3 weeks ago and did a number on my right ankle. X-ray showed no break, just  stretched ligaments but the bruising was horrific all over the foot (thank you asprin) and because it isn't healing as well as it should GP wanted a follow up with further X-rays,ultra sounds and the dexa scan. Keeping the muscles strong is another catch 22....the more I try to do resistance exercise the more my shoulders/arms/legs hurt, even if I do it in the pool. ( I have a rotata cuff impingement from the PMR frozen shoulders) so  its a slow process at the moment. Ive been on a tapering plan over the past 6 months of pred, started on 50mg and now down to 11, due to drop to 10 on Saturday but at the moment I haven't adjusted well to the last drop so I may delay that, which isn't what the GP or rheumy wants to hear. I will be starting the DSNS method once I do go down to 10 though, as up till now my reductions have been at 2 weeks durations, the 10 is to be for 4 weeks. A good time to start the DSNS I think.     

You are on pred and your GP is worried about slow healing of ligaments? You couldn't make it up could you!! Mind you - to be fair it made no difference to me!

And it doesn't really sound as if that low BD has led to anything horrendous - so pick your feet up in future! There are a LOT of risk factors you can deal with without side effects - I can write an essay on that aspect ;-)

I’d be interested to read that essay! And I agree,given my bone condition I’m lucky I  haven’t had anything more serious as far as broken bones go touch wood.

Haha!!!!

The first thing you do is look at your home - most falls happen at home. Good lighting, especially on stairs or anywhere there may be a trip hazard, is important. Not these low level/take ages to reach full light things or you won't use them! Remove anything you could trip on: trailing cables, loose rugs, low bits of furniture, pets who like to weave around your feet (even the Queen has reduced corgi numbers). Wear proper shoes - no sloppy slippers even in the house - and heel heights you don't teeter on or that could catch on stair edges or wherever. Keep things in good repair.

Make sure your vit D level is right (yes, low vit D can lead to poor balance!) and that you drink enough water so you don't become dehydrated. Get your BP checked  (low BP is a common cause of falls) and keep your muscle tone good with appropriate exercises. 

That's off the top of my head - I'm sure I'll think of other things later but it's late...

I used to use coconut oil. Absolutely slather it on. I was lucky in that I always tanned up beautifully. But between that and playing golf for 15 years I am paying for it now with all these ugly things growing on my legs and arms and funnily enough around my neck. I wouldn`t be surprised if one of the ugly little things turns into an extra head one day! I have just looked up the osteoporosis site and there number is 1800 242 141.I think they may have a brochure with exercises that will help you. Did you know that here in Australia you can get a form signed by your GP ( EPC form) that allows you to get 5 visits to an allied health professional which would include an exercise physiologist. These come under the medicare system and are usually free or there may be a small out of pocket charge. Hope this has been helpful for you.Take Care Kathy

Hi Kassiebeetle, 

Good old coconut oil has many uses....just not sure it was ever meant to baste humans!🤪 

I actually have an excercise physiologist, I have lower back bulging discs and saw him in 2016 under the health care plan you mention. I contacted him again early this year when I thought the discs were playing up again and he modified the excercises but the more I did the worse I got and we couldn’t work out why until the PMR pain REALLY kicked in and I was immobile. Might just be the right time to go back I think, so thanks for reminding me. This has indeed been helpful as the brain hasn’t fully recovered from the shock of going from a fit, active and healthy energiser bunny who did do regular excercise to someone who has trouble moving at times and has to watch their step 😩😩