Prolia

[Jane424]

my GP wants me to take PROLIA for my bnes. Have any of you had it and what was your xoeruence? Thank you.

[HeronNS]

Why does your doctor want you to take Prolia? have you had a DXA scan? Have you had any fractures definitely caused by osteoporosis? If you do have "low bone mass" have you been tested for all possible causes of osteoporosis?

Unless you definitely have very serious osteoporosis you would be wise to defer a decision until you have done a lot more research about ways to manage bone thinning.

A couple of places to get you started:

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

healthline.com/health/drugs...

Next to this post you should now see links to some related posts on HealthUnlocked that you can look at as well.

Good Luck!

[Jane424 in reply to HeronNS]

I am 82, have osteopenia and myeloma with no bone lesions. January I fractured my sacrum bilaterally. I had a lot of pain with pamidronate. Am on 7 mg prednisone. Thanks. Jane

[HeronNS in reply to Jane424]

Under your circumstances and with the understanding that once you start Prolia it's unlikely you will ever be able to stop taking it, your doctor probably has the best information for you. I do know that some people have had serious side effects, but also they were often people who would probably have done better with another medication, or even no medication. It's probably not a good idea for younger people, or those with no other complicating illnesses who could do well with one of the older drugs, but sometimes doctors suggest it as a first line treatment when it isn't warranted. It may be in your case.

I think if you haven't already you should post your question on both the Bone Health and the American Bone Health communities here, as there has been a lot of discussion about Prolia, and although the overwhelming majority of the comments are negative (isn't that always the way, we get involved when there are problems) there are people who have posted with quite a positive experience with Prolia. It would likely also be helpful if you put in a bit of a description about your situation in the post as that may get some more relevant responses. As a hint, change the wording slightly in your posts, add a couple of words to one of the titles, if you post on both of those communities so the HealthUnlocked AI doesn't flag you as spam!

[PMRpro Ambassador]

Did he explain why he wants you to be on Prolia? Is a GP able to prescribe it? I thought it must be initiated by a specialist in bone disorders - in much the same way methotrexate is used.

[Jane424 in reply to PMRpro]

We are in Canada. Our GP has suggested it to both of us. We are 82 and I have myeloma. My husband just broke several ribs; I fractured my sacrum. She prefers it to bisphonates. I had a lot of pain with pamidronate and discontinued it as my bones are clear of lesions. Any comments welcome. Jane

[PMRpro Ambassador in reply to Jane424]

My husband was put on it and it didn't seem to bother him - he never said anything at least. As long as whoever initiates it is aware of the fact that either it must be continued indefinitely or replaced with a bisphosphonate on discontinuation - otherwise there is a rapid loss of the bone density gained when it is stopped.

[agingfeminist]

I have been on Prolia for 3 years with no side effects. And I do expect to be on the twice yearly injections for life....hopefully no reason to stop. Yu will need to maintain a calcium rich diet (1200mg plus a day). It seems to be showing better long-term results than the biphosphonates.

You should have a blood test before each injection to check blood calcium level.

But do talk over with a bone specialist.

[Jane424 in reply to agingfeminist]

I am casein intolerant so no dairy. Also since I had H.Pylori I cannot tolerate mineral supplements. Re osteoporosis, when I had back surgery, the surgeon said my bones were in excellent condition although I had been diagnosed with osteopenia. I am 83 and have lost no height. No pains indicating vertebral fracture. It looks as if Prolia not for me. Thanks, Jane

[Hirwaen]

I have been on Prolia for 3 years, couldn’t tolerate biphosphonates. No obvious side effects but have recently fractured my 5th metatarsal which is considered to due to osteoporosis in a person of my age. So I will continue.

[PMRpro Ambassador in reply to Hirwaen]

You shouldn't play football

[Hirwaen in reply to PMRpro]

I wish it had been football ⚽️ just stepping down too heavily and a dratted🥾for 8weeks.😵‍💫

[PMRpro Ambassador in reply to Hirwaen]

Ah - now THAT was what my husband did. He fractured a metatarsal tripping on a concrete edge to the lawn (while chasing his 2 year old daughter) but a year later he stepped down from the runner along a dodgems ride and the lower step wasn't where he expected it to be and rebroke it! He was greeted by the orthopod prof with "That isn't supposed to happen!"

Bet you aren't making as much fuss about the pot as he did!

[Nannie-C in reply to Hirwaen]

Did your Dr not consider the fact that bisphosphonate drugs are required as a relay drug when you stop, halt or miss Prolia?. These are essential to try and reduce the rebound phenomenon that occurs when anyone stops it, this rebound rapidly reduces bone density back to pre Prolia levels or lower and sadly brings the real risks of multiple vertebral fractures occurring. I’m one who’s Dr failed to warn me, as recommended by makers and one who for couple of reasons couldn’t take a relay and stuck in Prolia trap.

[Jane424]

I raised this but she dismissed it and said that doctors were switching from bisphosphonates to Prolia. Thanks, Jane

[Sharitone]

I have had it for just over a year, to replace AA , which the GP felt was causing indigestion. It hasn't given me any obvious problems, and less troublesome than taking AA. I have 3 vertebral compression fractures and have lost an inch in height recently. But a recent DXA scan really wasn't that bad - just osteopenia, so maybe this was thanks to the Prolia - difficult to tell. Is it the osteopenia that makes your GP want you to have Prolia?

[Viveka]

Does your doc know that once you start prolia you have to keep on it forever? When they kept nagging me about bone protection after diagnosed with GCA I asked my GP for prolia, denusomab, because my mum took it after GCA with no side effects. I had one shot - again no problems.

However, a kind person on this forum told me that prolia is a for life treatment. They sent me some research as did PRO and I stopped after one injection. If you want the research PM me and I will probably be able to dig it out. My GP had no idea about this issue with Dmab.

My mum started with AA infusion and had no side effects but was then put on Dmab because I think it is an NHS direction to do these things in community rather than hospital. She was on it for 7 years and as I say had no side effects. Multiple falls, and no injuries. Just died recently at 99. I surmise it must have helped protect her.

If it were me I would ask about AA injections which you take for up to 3 years - though, and I may get this wrong, I believe it is more about protecting what bone strength you have; prolia builds bone but I understand this is not as strong as self produced bone (???). Also I'd look at Heron NS's advice on building bones.

[Jane424 in reply to Viveka]

Many thanks. I also notice that side effects can be bone and muscle pain. Mayo clinic warns that it diminishes the immune system and one can get severe infections. I am dairy-free (react to casein) and she never talked about checking my calcium levels. Again thanks. Jane