Prolia

[BoaterAnnie]

Hi friends. I have been prescribed Prolia by a bone specialist and thought I would seek your opinions on the matter.

Here's what's happening:

I have had PMR for 2 years and am still on 16mg of prednisone. Right now I am using the DSNS method with a bit of an extension to reduce 1mg every 6 weeks or so. I have had the dexa scan one year ago and a few months ago and it showed a significant drop in bone density over the course of one year. I have osteopenia in my hip. I started Alendronate and it is fine - no side effects.

The bone specialist explained that there are a few factors at play here: first, I have been on a fairly high dose of prednisone for 2 years already and it looks like it might still be quite awhile before I am off it. Second, I am 52 in and menopause is also causing bone density loss right now. Third, apparently people who are taking prednisone can break bones at a higher bone density than regular folks.

He said that what he expected is that if I continue taking the Alendronate, when I have my next dexa scan, my bone density will likely be about the same. So the alendronate will prevent the situation from getting worse. But it wont get better.

So he said that, cost aside, his recommendation is to take the Prolia because that will improve my bone density. He said that I could take Prolia for awhile, maybe a year or two depending on how long I have to take prednisone, and then switch back to Alendronate.

The Prolia is expensive, about $800 Canadian per year. But I figure if I break a hip or something I am really going to wish I spent the money. So I am planning on taking his advice.

Is there anything you think I should consider here before I take the Prolia. I am aware of the rebound effect when you stop taking Prolia. I guess that is why he said I could switch back to Alendronate afterwards.

Thanks for your help!

Anne.

[alvertta]

I am 73. GCA. Since October 2018. Currently on 21prednisone. Reducing 2 mg per week. Plus actemra every second week. I have had prolio 6 months ago. My bone density was always excellent before GCA. Has determination bit. But still in the good column. Second prolio coming up mid December. I take it to prevent breaks. Live in Ontario...no cost as I am Over 65.

[PMRpro Ambassador]

I believe a study did find that being on a bisphosphonate BEFORE Prolia moderates the rebound effect when it is stopped and at least they appear know that it is necessary to transfer to oral bisphosphonates if you do stop. The idea presumably is that it will improve the bone density to a better baseline ...

[Nannie-C]

Ok with first Prolia and seemed ok but awful with second, could only tolerate 18 weeks of actonel due to side effects and now have at least another 15 months of rebound period worrying about whether I’ll fracture or not. Had spinal and sacral fractures before starting it. My advice to anyone is to read and research all you can. All OP drugs give potential side effects but some a lot more and long lasting than others. Only forteo or tymlos with build decent bone unlike bisphosphonates and prolia which only stop the old bone being discarded and stored up making bone seem denser but not stronger just brittle. You can have fractures on both these drugs. Read prolia.com and prolia monograph which you will see the lists of potential side effects that they have covered themselves by documenting them. I was on 8 mgs when I started and now at 6.5 mgs prednisolone. Your choice and a big decision to make sadly I wish I’d heeded my instincts.

[Hidden]

I don’t know if my experience will help with your decision, but I’ll tell you how it went. Pred started in may 2018. Dexascan soon after showed osteopenia range. By end of 2019, dx with 7 vertebral fractures. Vertebroplasty was no help. First Prolia in March, 2020. Second Dexascan, definite osteoporosis so qualified for second Prolia, free, in September. No side effects. Guess I’ll know in two years if it’s doing anything. Glad you mentioned how long one takes Prolia. Will need to discuss with dr. So fearful of more fractures as they seriously limited my abilities. It’s been a most difficult year fighting back to doing the simple things. Possibly I’m just one of the unlucky ones who develop osteoporosis anyway. I am 81. It’s a hard decision to make and I send best wishes and a 🤗 to you.

[BoaterAnnie in reply to Hidden]

OMG, 7 vertebral fractures? That sounds absolutely horrifying! I'm so sorry to hear you are going through that. I really appreciate your feedback. What you have experienced is exactly what I am afraid of because I've had back pain my whole life (well since I injured it when I was 12) and I don't want things to get worse. I really hope the Prolia helps your situation. *hugs* back at you.

[BoaterAnnie]

I read the product monograph and I'm a little worried about the warning about infections. It says "Use with caution in patients with impaired immune systems or using concomitant immunosuppressive therapy;". So I am also taking methotrextate. Does anyone have experience with prednisone, methotrexate and prolia? Ugh, this drug cocktail keeps getting worse!

[PMRpro Ambassador in reply to BoaterAnnie]

If you want an answer to this I think it would be better as a new thread. The drug interaction site won't play at the moment!!

However - this

ard.bmj.com/content/75/6/983

suggests it isn't a problem.

[BoaterAnnie in reply to PMRpro]

Thank you for that link! Much appreciated.