Help and Opinions on Prolia for Osteoporosis

[Pumpkin2009]

After breaking 3 ribs for no reason and my bone density much worse, the rheumatologist, endocrinologist and GP felt Prolia may be the next step. There is no way to know what caused the ribs to break. I have taken Actonel, Boniva, Forteo and Fosamax already. I really did not want to consider this because of the possibility of side affects lasting for 6 months. Then decided it is probably the right step. Then recently, I have read over and over that once you start taking it, you can not stop as then the fracture risk increases quickly . I have multiple risk factors for bone loss - lupus, hyperparathyroidism, steroid use, poor absorption of Vit. D, etc. Now, I am back wondering if my initial instincts to not get the shots are correct. Any help at all would be appreciated.

Healing hugs.

[PMRpro]

It has been realised in the past few years that while Prolia does build bone density very well, when you stop taking it there is a dramatic loss of bone density in the first couple of years after stopping that has been leading to spinal fractures. The recommended approach is to either leave the patient on Prolia indefinitely or to switch to a bisphosphonate, either oral or infusion, which then maintains the achieved bone density. You need to discuss that with your doctors to be sure they are aware of the bone density loss factor and what they intend doing to circumvent it.

But I'd want to know why they think it will be superior to Forteo for you - or is it a factor in the hyperparathyroidism? And of course - as far as I know, none of them will work without adequate calcium and vit D.

[Pumpkin2009 in reply to PMRpro]

Thank you for your help. I took forteo and unfortunately it made me ill every day. It probably would have been the best for having hyperparathyroidism. I am going to discuss all of this further before I get the first shot. I have had other fractures from accidents since 2015 including 2 spinal, neck and wrist, but can't say for sure due to the osteoporosis.

Healing hugs.

[PMRpro in reply to Pumpkin2009]

What is causing the hyperparathyroidism? Do they know? Since that is what is causing the osteoporosis ...

[Pumpkin2009 in reply to PMRpro]

I started with osteopenia many years ago not long after my lupus diagnosis. Then it became osteoporosis and because of being on meds and not enough improvement, the rheumatologist I had then who has since retired ran blood work for hyperparathyroidism. They do not treat it unless calcium levels are high and mine are not. Treatment is removing the glands. From what I understand, lupus is probably the factor to causing the hyperpara thyroidism like it affects the thyroid gland sometimes. There are 2 different Vit. D tests. Although the one I have is always very low, the other one that is linked to the parathyroid gland is high so I can't take Vit. D which I had been on for years. Like everything else, labs control everything. The symptoms for hyperparathyroidism are so much like lupus symptoms who knows what is what. Thanks for you interest. and support.

Healing hugs.

[PMRpro in reply to Pumpkin2009]

All the best ...

[Jmiller623]

There are lots of things going on here but your provider is correct. After Forteo, Prolia is next. You may find benefit from IV formulations if you have poor absorption. I’d make sure you are optimized from an endocrinology standpoint before switching.

You are correct, once you go on to Prolia it is not advised to stop due to increase risk of vertebral fracture. This must be discussed in detail with the prescribing provider. A lot of people end up on it indefinitely.

[Pumpkin2009 in reply to Jmiller623]

Jmiller623, Thank you. I am going to discuss this further with my doctors before committing to the first shot. Just wish there were easier answers for all of us.

Healing hugs.

[Chanpreet_Walia LUPUS UK]

Hi Pumpkin2009,

Our factsheet on lupus, bone health and osteoporosis discusses the treatment denosumab (Prolia), read the factsheet at lupusuk.org.uk/wp-content/u...

Gentle hugs and best wishes,

Chanpreet