Zoledronic Acid or Denosumab?

Eileen, (and Penelope) I think that your last sentence is correct. As far as I have been able to discern,  If you have either severe osteoporosis OR have already have had fractures, the medics seem to select the "stronger" meds.- Prolia, Zoledronic Acid or Forsteo.  I fell into the former category (severe OP in my back) and Forsteo was recommended. The rheumatologist did not select Prolia because of" it's effect on the immune system" (?)  and I already had PMR. It is a really strong med. All of these meds have side-effects though I was lucky enough.

Penelope, did you see a rheumatologist as well as the OP nurse? I say this because, though you have had fractures, you are only in the osteopenia range and there is controversy over whether such aggressive treatment is needed .(ie. instead of a regular bisphosphonate) .. Perhaps it's because you have another year of Pred. ahead, but then again you must be at the lower dosage now???? 

If it was me, I'd look to see the rheumatologist or endocrinologist.

Hope this makes some kind of sense.  Kind regards, J

Nefret also has PMR/GCA but she was put on denosumab with no problems at all. If I were given the option I think Forsteo is what I'd prefer to try - but there is little likelihood of the need, last time we looked, after nearly 4 years of pred I was comfortably in the middle of osteopenia and unchanged in that time. I suppose i'm on a different form of pred but at a far lower dose.

I have to say - there are specialists I'd rather discuss "bone protection" medications with than with rheumies...

Yes, I noticed Nefret's post and I have friends taking Prolia and doing very well.  . .. Re. your own osteopenia - you are so lucky that your scans show no change and probably never will. Thinking over some of your posts re. diet and reducing carbs, I'm assuming you've never been thin. I'm convinced that ' skinnys' are more prone to OP as they have thinner bones also and don't have the weight-bearing benefit that their more ample sisters conplain about. ( I've always yearned to be heavier and just loved being pregnant!!). 

Finally re. the 'bone protection' concept I guess you're right  though too late for me - I skipped in to the dexa scan without a bother and was then devastated by by the diagnosis. Took a while to sort my head out . . . 

J

I have sen a Rheumatologist once, over the last 3 years, quite recently. He told me my PMR had gone as my crp said so! I was on 10mg Pred at the time. So no help there. Endrocronologist, very unlikely. The problem is I can't tolerate Biophospates as I suffer from Gastric Reflux (GORD)

I am currently getting to 7.5mg, but it will take another year, to get right down. I am having mild, but recognisable buttock pain at the moment, so it's not gone away completely.

I think the other reason they want to treat me is because nobody in my family ever had Osteoporosis, My Gran was 98 before she had a fracture and my mum, never did.

What is Forsteo please. Nobody has mentioned that one!

Hi Penelope,  Forsteo (or Forteo) is the only med. that actually builds new bone. It's self-administered by injection each day with a pre-loaded pen with a really fine needle (like a diabetic pen) into the thigh or abdomen. It is used for 2 years in most cases and then to maintain the new bone you need other meds. (like a bisphosphonate or other) for a couple of years.It is unfortunately very expensive but various health systems can helf here. But before starting any meds. the cause of your bone thinning should be sought, your calcium levels, your vit.D levels and your full medical history of other illnesses and lifestyle habits etc. Don't let any doc or OP nurse just 'put' you on meds. until this happens. . ..   J

I have been down to 8st - which is pretty slim! And compared to my friends I have very slim wrists and tiny feet. But no, you're right, I've never been like my size 8 on a fat day daughter!

You are actually quite right - the stimulus to build bone is the slight deformation of the long bones that happens when you put your weight on them and obviously a cuddly person will have more of that than a delicate flower and that is part of the reason slight people are more likely to develop osteoporosis.

I did suggest once - slightly tongue in cheek but it is a valid point - that even if you couldn't drag yourself UP the staris for exercise, that taking the lift and then stomping your way back down had to be good for you!

Thank you. Actually a friend has just been put on 'daily, self administered injections', so that must be the one. She actually has very serious OP.

I am unable to tolerate daily Calcium, magnesium meds. I walk the dog daily, so I dont think there is any reason for the Osteopoenia apart from the long term steroids.

Thanks to all the advice and helpon here, I am slowly coming to a decision.

Penelope, you don't HAVE  to take calcium meds.as it is quite easy to get it from your diet. Check the web. for 'calcium calculator' charts and yoiu'll see. In fact it is quite strongly advised that where possible you should get it from diet and only take a supplement if you are 'falling short' in your daily amount. Now if you are intolerant to dairy foods, that's another matter . .. 

The main thing that concerns me from what you've posted is that you've had 2 fractures. It's therefore important that SOME steps are taken to find the cause of these and then take steps to prevent further ones. So I don't think that a doctor will go along with just the exercise and diet route (which would be ok if it was just that your scores are in the osteopenia range).  J

Yes - it's the spinal fractures that I see as the problem. It doesn't matter how much exercise you get walking the dog the state of the vertebrae won't improve. 

The problem with pred is that it makes you excrete more calcium in the urine than normal and that is the primary reason for taking extra in the form of supplements. If you do it with diet it will mean a lot of calcium containing food. I was told to avoid dairy products by a dietician - the expression on her face when I went back with a diet diary done in accordance with her instructions and she calculated the the calcium intake was priceless! I pointed out she couldn't have it all ways - you'd have thought she'd be aware of that wouldn't you 

"Can't tolerate the bisphosphonates"  -  well that's why zoledronic acid and denosumab were suggested as they bypass the stomach in their administration. Forsteo does also. But these three sound like a bit of 'overkill' for someone with osteopenia as the're very strong. . . . Still if you've had fractures and will be continuing the Pred. for another good while, maybe he is happy to improve bone and protect against further fractures . . .   Could you get another opinion?  J

It does depend on the dexascan readings - you can have an osteopenia level generally but have vertebrae that are worse. I have a couple of vertebrae that are far lower bone density than my long bones. Apparently hairline cracks/fractures in vertebrae are signals for longer term problems so should be treated - I read that just recently but don't ask me where.

You're right! Slowly 'running' downstairs while holding the hand rail is really good as your whole body weight lands on your bones/joints for a couple of seconds at each step . . . 

Loved your distinction between the 'cuddly' person and the 'delicate flower'!   Let me tell you, the 'cuddly ' person is just that - cuddly. Try, however, to cuddle the 'delicate flower' and you'd be gored with the bone contact . . . . 

Getting away from the weight issue for a minute. It seems that you can tell if you are a big boned or a fine-boned person by measuring your wrist (you kind of implied this).  If you circle  a 7.5" band around your wrist and have room to spare, you are small/fine boned. If you need much more than the 7.5, well . .  . .  J

Yeah, you're on to something there. Penelope may only have trouble in some are of the spine, and be fine elsewhere. (Bit like myself).  Another thing I read (somewhere) is that most fractures occurred in the osteopenia to -2.5 range of readings. I really CANNOT figure out how this could be the case . . . .  Did you ever hear of this?  J

Judging by my nominations bracelet - my wrist is 6.7in. I had a wrap around twice watch strap that absolutely swam around my wrist - my friend coveted it and wanted to try it on but it didn't come near to closing. I'd never realised how slim my wrists are!

Mind you - hug my cousin and she feels as if she is going to break...

 

There is actually no direct correlation between bone density and fractures - people with rubbish bone density don't fracture, people with normal density do. It is also claimed that the figures they use as cut-offs are just plucked out of the air. Do people with known poor density take more care maybe? Interesting though.

Search betterbones whowillfracture - makes for interesting reading.

There are a load of other factors which appear more important. Certainly keeping as mobile as possible and being vit D replete are ones we can actively do something about.

But apart from the being on pred I'd say my risk factors are low so I'll resist any suggestion of AA! I've never taken a PPI - which appear to be even worse for risk of fracture than pred. So why do they make the fuss about pred and not a PPI? I've told people they are at risk because they've been on PPIs for years (not a recommended practice according to the FDA but GPs do it all the time) but it has never been mentioned to them by anyone else.

Mmmmm, so maybe the 'no falls, no fractures' advice is spot- on. I always thought it was a bit glib . . . 

Thanks, I'll look up that.  Yes I heard about OP and PPIs. For stomach problems it seems that Zantac (don't know the compound name) is preferable.

No, that's right, avoid that part of the risk.

But if you look at the things that pose risks - how many of them apply to inadequately managed PMR? Better to give a patient a bit more pred so they are mobile surely than to panic that 1mg here or there is going to give them broken bones? And it also underlines the inadequacy of the care we get - physio to encourage mobility should be a basic. And information about how to avoid falls - before my PMR was treated I could trip over nothing! How I didnt break something I have no idea! I had a vit D of 21! 

all little things but together they would make such a difference.

Thank you, I'm sure you are right, but it's hard taking enough through diet when you have to watch your weight. I do try.