Stopping Prolia

[Inyh]

Has anyone stopped Prolia & not taken any other meds & have had no vertebrae fractures? What is the percentage of people that do get the vertebrae fractures? Thank you.

[Kaarina]

I would think that is a difficult question to answer. The people in this community usually join when they are having problems whereas the others who sail through when taking drugs for osteoporosis probably never think to join a forum as they are busy getting on with their lives. One does read now that one should not just stop prolia without following on with another osteoporosis drug, although some medics unfortunately fail to know this.

[Met00]

That's an interesting question. I've just done a quick bit of research and discovered that anything between 4% and 10% of people stopping Prolia end up with fractures, with a very high incidence of multiple vertebral fractures. Here are some links if you want to read more: ncbi.nlm.nih.gov/pmc/articl...; ard.bmj.com/content/79/Supp...

[obejoyful]

Obejoyful

Hi Inyh

I had one injection of Prolia, 2 years ago now and didn't like the side effects so stopped and did not take any other alternative medicine suggested. I am happy to say I have not had any fractures so far and feel ok. I do take Vitamin K which I saw recommended on this site.

[100flowers in reply to obejoyful]

Hi obejoyful I'm just about to have my second injection of prolia,can you tell me what your side effects were

Thank you

[Inyh in reply to 100flowers]

I never had a bad reaction to Prolia. I had 3 shots & was due for a shot in December but I got COVID & was sick for 2 months & then had to have major dental work - few extractions. I am now 5 months past my shot & have been reading how bad Prolia is for the body & am worried I may have bad reaction which can happen anytime. I also did not know that I should be taking some other kind of meds because you aren’t supposed to stop Prolia suddenly because compressed vertebrae is a common side effect when you stop & I would like to find out if that is a common occurrence. I’m still checking out my options. Thanks

[Arcadia10 in reply to Inyh]

If you haven't gone on to a bisphosphonate since your post 2 months ago nor (hopefully) had any vertebral fractures, it would definitely be worth your while having a CTx blood test done to check your bone turnover markers in the post-Prolia phase. The rebound can generally be tracked by a sudden spike in your bone turnover and, if this is happening, you would need to go onto a bisphosphonate to keep the turnover under control. There are lots of people on this and other sites who have sustained multiple vertebral fractures since stopping Prolia without using a relay bisphosphonate. I have read that the incidence is between 10% and 15%, so not very high, but you wouldn't want to be one of the unlucky ones. Life in a wheelchair or on a walker and in lots of pain sounds terrible. I'm sure you'd want to avoid that situation.

I had 4 Prolia injections and have been using Actonel 35 mg per week as a relay drug for the past 15 months since my missed Prolia shot (Mar 2020). My CTx is climbing steadily but still within acceptable limits and in 50% increments over the previous test result, so slowing. I expect to be on Actonel for 2 years to get off Prolia safely, and am having CTx test done every 2-3 months to monitor the turnover. To me, it's not worth the risk of sustaining multiple vertebral fractures by just winging it and hoping for the best.

[obejoyful in reply to 100flowers]

Hello 100flowers (love the name)

It was my personal experience that lead me to this site. Of course some people have no side effects. However I had incredible joint and muscle pain (I felt good for 2 days after the injection so thought I was ok) and I found it almost impossible to move around. I also felt nauseous and a really weird headache down the right side of my face. This feeling lasted for at least 9 weeks. Luckily I am now feeling really well so I can hardly remember. I joined the site at that time and found via HeronNS that it was probably ok to stop at one but not if you have further doses without taking something else. After reading everything on this site I decided I was definitely going to stop and just started the Vitamin K and try to walk regularly and be careful with not carrying too much. I was not given full information, only about possible jaw problems. I worry about putting things in my body, I guess time will tell if I have any broken bones. I only had osteoporosis in my back. I haven't had a further scan. Whatever you decide I wish you luck.

[100flowers in reply to obejoyful]

Thank you found it very interesting reading

[HeronNS]

We aren't doctors so I don't think any of us can give you really good advice other than the personal experiences you are asking for - and we are all different - but what I have read is that it's okay to stop if you've only had one dose of Prolia, but after two or more it is advisable to take another bone med to maintain any gain. What happens is, simply stated, Prolia prevents the osteoclasts (the cells which take away old bone) from functioning. As soon as the effects of Prolia wear off they bounce back and work very hard to make up for lost time, thus in effect causing the possibility of developing rebound osteoporosis worse than the condition which was originally being treated, Please consult with your doctor asap.

Unfortunately the risk of fracture appears to be quite high, although I wonder if other things you may have been doing to promote bone health (Vitamin K2 supplements, appropriate exercise, etc) could delay the rebound? I don't know if studies have been done on that. However I did find this, which is a bit alarming:

pubmed.ncbi.nlm.nih.gov/306...

[100flowers in reply to HeronNS]

Thank you very interesting

[Terramar]

My last prolia injection was May 2020. I chose to stop without a relay drug and follow my turnover markers. I took Fosamax for 10+ years, Forteo for 2 and Prolia for 2.5 years. Bisphosphonates stay in your system for 10 years. I probably have brittle bones because of all these meds I have taken. I want to try to get some normal bone remodeling. I take Algae Cal plus, Vitamin D, Strontium citrate, Magnesium, and melatonin. Algae cal Plus has Boron and Vitamin K. I walk with a 10lb weighted vest. So far I am good but it is early. I am monitoring my bone turnover markers every 3 months. The doctors don't seem to want to care for me now that I do not want prescription meds and seem irritated when I ask for turnover markers and a dexa scan with a trabecular bone score. They look at me like I am from outer space. Not one has offered me a return appointment but I will call so I can get my blood work and tests done.

[100flowers in reply to Terramar]

Thank you interesting read

[Inyh]

Thanks for your input. Stay strong!