Zoledronic Acid or Denosumab?
Posted , 7 users are following.
I have been diagnosed with Osteopenia. I am coming up to 70 and have had PMR for 3 years. I have just discovered that I have suffered two fractures of the spine, so after 3 years of pred, and at least another to look forward to , the Osteoporosis Nurse thinks I ought to have treatment. I gather the Zoledronic Acid is an annual drip and Denosumab is a bi-annual injection. I have looked at the chemical structure of these and find that Denosumab is mono-clonal, which makes me lean toward it as I feel there may be fewer side effects. I would be grateful to hear of other peoples experiences of these.
0 likes, 39 replies
lodgerUK_NE penelope10875
Posted
Go to the green banner at the top and on the right hand side there is the word FORUMS, click on that and then look for osteopenia.
You can then ask the same question and the people who have had experience will help.
I have no doubt that others will be along on this thread and also help out.
EileenH penelope10875
Posted
You might be better asking the question about experiences on an osteoporosis forum since, in the UK at least, the people having medication alongside pred will be mainly on alendronic acid - there is a list and normally you start at number 1 and progress through the list if you can't tolerate the first drug, second and so on. Denosumab is a long way down the list! However, there are exceptions made for certain things and presumably having spinal fractures may change the preferred treatment.
Juno-Irl-Dub EileenH
Posted
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
EileenH Juno-Irl-Dub
Posted
I have to say - there are specialists I'd rather discuss "bone protection" medications with than with rheumies...
Juno-Irl-Dub EileenH
Posted
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
penelope10875 Juno-Irl-Dub
Posted
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.
penelope10875 Juno-Irl-Dub
Posted
Juno-Irl-Dub penelope10875
Posted
EileenH Juno-Irl-Dub
Posted
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!
penelope10875 Juno-Irl-Dub
Posted
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.
Juno-Irl-Dub penelope10875
Posted
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
EileenH Juno-Irl-Dub
Posted
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
Juno-Irl-Dub penelope10875
Posted
EileenH Juno-Irl-Dub
Posted
Juno-Irl-Dub EileenH
Posted
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
Juno-Irl-Dub EileenH
Posted
EileenH Juno-Irl-Dub
Posted
Mind you - hug my cousin and she feels as if she is going to break...
EileenH Juno-Irl-Dub
Posted
EileenH
Posted
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.
Juno-Irl-Dub EileenH
Posted
Juno-Irl-Dub EileenH
Posted
EileenH Juno-Irl-Dub
Posted
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.
penelope10875 Juno-Irl-Dub
Posted