My doctor has asked me to read up about Prolia as he thinks it will help my osteoporosis and wants me to be sure I want the injections.
Looking at the discussion here there seem to be questions but very few answers and I have searched the internet but can find little info.
Is there someone who has personal or even anecdotal experience who can inform me what effects this stuff has. Thank you
Hi John, I had my first injection February just gone. I’ve had no side effects touch wood HOWEVER I was originally told by my rheumatologist that I would only take it for 3 years. After reading up on it not so. He has now confirmed it should be taken for life. It is a “wonder drug” while on it I’m told, but once off it your bones are not covered any more and you have a high risk of more fractures....just like before. My biggest worry is the possibility of jaw problems. Although I’m not happy about being on it, the alternative of possibly breaking my back coughing wouldn’t have changed my mind. My t score was -4 and I have extremely high risk factors...and I’d led an active, healthy eating lifestyle full of calcium etc. If you aren’t in the severe osteoporosis range though....maybe think twice.
You can’t safely come off it is probably the biggest deterrent. It should not be the first option either. It depends what you have already tried and how bad your scores are and if you have broken any bones.
I have refused it and am about to have another Dexa scan in two days time.
I am having vitamin K2 as my main supplement as it aims the calcium onto the bones. I also have D3 prescribed and magnesium often.
I sneezed and ruptured two discs but broke no bones, I now keep my mouth open when sneezing and my head back to let it out. It is obviously unsafe for me to hold it in.
My worst back score is -4.3 but I have not broken any bones apart from a toe which I smashed into the side of a bath many years ago and is now vulnerable to bumps.
Diet and exercise are important and I concentrate on a good diet and as much exercise as I can manage as I have multiple issues with my back and elsewhere.
Apart from ruptured discs I have arthritis and scoliosis. The osteoporosis is probably the least of my problems lol.
I won’t be taking the drugs any time soon because I don’t trust them but I respect people have a right to choose, a bit like religion and politics.
Do lots of research and read through all the comments in these threads because there are answers there for you. And don’t be rushed into a decision because the drugs have a half life so be very sure before you beigin because they are in your system for a very long time.
My sister only had the one and is okay just leaving it at that. She had trouble with both AA and prolia and her tscores were not even too bad to being with. I remember her yearning for the six months to be up as she was so unwell. I think it is safe to come off if you do not take it for years.
Hi John. I have been on bonviva (equivalent of prolia) for 18 months and have had absolutely NO side effects. Reed up about side effects, but not everybody has them.
Referring to Constance's reply, please be aware that Bonviva is ibandronic acid (a bisphosphonate) and Prolia is denosumab, which works a different way.
https://www.ncbi.nlm.nih.gov/pubmed/21145999
Prolia is the medication which has recently been found to result in unacceptable rebound osteoporosis when discontinued. Personally I would not consider it as a first line medication. If you must take a medication then choose something which you can stop taking if it doesn't agree with you. If your t-score is not dire you could consider trying the natural means of improving bone density which a number of us on the forum have been using, with success. Otherwise I think taking a bisphosphonate for a couple of years (certainly no more than three, to avoid the bad effects which build up over time) plus doing the natural things should provide a good result, and you will be able to discontinue any medication and carry on with the natural means from then on. By "natural" I mean the usual - nutrition, appropriate exercise, and a few supplements like Vitamin D3 and Vitamin K2.
Hi Anhaga, how are you? We’ve spoken before on previous posts about the use of Prolia, and I’m now seriously considering asking my rheumy about not continuing with it. I’ve only had the one injection last February and not due for the next until early August. I’ve had no side effects...well, I don’ t think so anyway, I think what I experienced was due to reducing too far on the prednisone at the time but I’ve sorted that out, and now I’m still reducing, down to 6mg ( from 50mg last June). If there is something else like a biophoshphonate that may work and only take for a few years then I’m wondering if that may be an option. Mind you, I wasn’t given that option originally, not with my dexa results and risk factors but I do take all the righ supplements and eat well and also try to walk at least 3 times a week for about 2-3 klms with a weighed vest, ankle weights, arms weights and Nordic poles. I look a sight but hey, at 63 I don’t really care. I’d like to walk more but the PMR/GCA dictates how much I can do before I collapse anyway. I see the rheumatologist in July, before my next injection, so I’ll let you know his answer. I’m not holding my breath, not with my t score and risk factors but it’s worth a try. 🤷♀️
Following on from above post, I’d love to know if anyone has been on Prolia for a few years, ...say 3...and then come off, and what has happened to them since. I know it has a half life, I was originally told it would be in my system for 5...that was before I was told I would have to stay on it. I wonder if there’s anyone out there that is, say, 8 years post Prolia. Would love to hear their story.
Hi Reeceregan, thank you so much for taking the trouble to reply to my post.
I am between the devil and the deep blue sea, I have many and complex conditions, one of which was only diagnosed last Tuesday. I have, I am told, Barrett's oesophagus which is a nasty condition which alendronic acid and it's family only makes worse. So from what I have learned so far my choices are take Prolia or nothing. John
Hi Kathleen 65757,
Thank you for taking the trouble reply and for the information. John
Hi Constance.Dr
Thank you for your reply
John
Hi Anhaga thank you for taking time to reply with valuable information for my research.
Please see my reply to reeceregan. I am sorry I am not being lazy, I am pretty unwell this morning, had to call an an ambulance earlier.
John
Hi Kathleen. I’m seriously considering asking the rheumy about going off after one injection, although on the other hand my tscores and risk factors are pretty scary. Have a feeling he will poo poo that idea.
I really wasn’t given a choice at the time either John. My rheumatologist wasn’t interested in anything other than Prolia because it’s a denosumab and works differently to others that are bisphosphonates and he punched his argument home pretty emphatically. He even explained VERY VERY clearly why I had to have Something because having Nothing wasn’t an option either. However, only 3 years sounded reasonable .....for life is another matter. The other side of the coin is of course....how long is life. I’d rather live as best I can on medication for however long I have than be debilitated or in a nursing home. None of us are getting out of here alive...so I intend to make the most of what’s left. I’ll fight all the way. On saying that...I am worried about the side effects, so I’ll have another chat with the rheumy next visit.
No worries John! Can you tell us your tscores?
Never say nothing. You can get a description of my journey by googling healthunlocked my osteoporosis journey. Just one other way of tackling bone thinning.
Hi Kathleen, from what I have been learning from you good folks and elsewhere is that my t-score is comparatively chicken feed at 2.6, I shall talk to my doctor
Thank you
John
Oh that is not too bad at all. I wish mine was that good!
John, start taking vitamin K2 and check your vitamin D3 levels and calcium levels in your blood tests. Also, magnesium is very important as some people with osteoporosis have been found to be deficient in magnesium.
Make sure your diet has plenty of vegetables and some fruit including prunes. Yoghurt is very helpful too. Another good one is bony broth.
You can probably reverse that with natural means as it is not too bad.