Prolia - here's my view, 2 shots, 6 months in

[dobro45]

Hello Everyone. Firstly thank you all for everyone's time and effort on this site. I REALLY appreciate everyone's views, comments and experiences. And they truly helped me in deciding my medical/treatment choices. My back story..I'm 54 btw... short back story that brought me to this site 6 months ago and have just read posts since.... I broke my collarbone in Jan 2019 rolling over in bed to reach for a glass of water told 6-8 weeks recovery... March 2019.. still broken, bloodwork..... Surgery not an option, multiple fracture, un-pinnable, thin bones. May.. serious calcium/vitamin D deficiency. High doses of both. DEXA showed hips and spine osteopenia. DEXA doesn't measure neck or collarbones. June 2019... got referred to a Rheumatoligist to checkout my thyroid gland (which was fine btw), but he said... so when did you notice being calcium deficient?... Me: Only only time... 1982... my teeth got loose when I was 17 when I was expecting my baby. And my Irish mother said "ah that's what babies to a mother" so I thought.. well that's normal. Turns out it wasn't normal. And he knew that. Also told him in 2002 I had to have an emergency hysterectomy at 37 and have been on oral HRT since for bones. He said Prolia, NOW! I said why? You're 54, you've not been absorbing/converting calcium to make bone for over 30 years, and you've not been absorbing/converting HRT bone strength for over 15 years. DEXA measures hips and spine. You were lucky. They are boarderline high osteopenia/osteoperosis.. you're collarbones... mush. First injection June 2019. Quick, a jab, a burn, and ... I was OK.

And here's the KICKER!!! I just found out... my kidneys cannot convert any oral tablet or food to things my body needs. All oral HRT this past 18 years to keep my bones healthy... useless. My OBY now has me on HRT patches.. a little late but hey. Back to Prolia headline.... I am so sorry for everyone here who has had a bad experience, really I am. I especially feeling for those that have multiple medical conditions. But honest to goodness... Dec 23rd... injection #2.... a jab, a burn... this time a little light headed for a few hours... had a huge craving for Crackerbarrel... not sure if was for the food or the shopping. But hey , I got jabbed... did both! That's my excuse.

Again, may I PLEASE stress, this is not a story of advice. I have no other medical things going on except I broke my collarbone one night reaching out for a bottle of water 10 months ago, and subsequently learned a). Ortho Doctors don't take a 50+ bone break seriously from an ER referral, they treat you like a wimpy college jock b). If you break a bone, definitely go to ER, get diagnosed, then take their paper Ortho referral, and go see your GP for his Ortho/Rheumo/OBY referral. He/She will know far more about who to send you to in the early days than ER.

Back to Prolia. (Sorry this was a long post). I'm doing fine on it. I don't get sick, or bone aches, or muscle aches. Just a few hours of lightheadness. My Dexa scores.. are level.

[HeronNS]

What does "dexa scores...are level" mean?

[dobro45 in reply to HeronNS]

Sorry for not explaining. It means my bone density score remained the same and not worsened. (The goal of Prolia I believe).

[HeronNS in reply to dobro45]

Okay. Actually I had always thought the main reason Prolia was so heavily touted, at least until the problems became common knowledge, was because it improved bone density much more than standard bisphosphonates.

[dobro45 in reply to HeronNS]

Hi HeronNS, like I said earlier, I am not an authority, just a user of this med. My Dr said Prolia was to halt/stem further bone loss, I was never informed it could ever improve bone density. So I am pretty happy right now. I guess that is why sites like this are so important, so we can all learn from each other.

[HeronNS in reply to dobro45]

No, that's fair enough and no one is judging you. I just like to make sure I've got the facts straight myself so I don't say wrong things to others. Your experience is very valuable and I thank you for sharing.

Happy New Year!

[mollysuki in reply to dobro45]

I’ve had 5 injections my bone density from last Dexa has shown a 10% increase. I’m happy with that! Glad you’re comfortable with taking Prolia.

[Hidden]

Hi there wow I read your post and so sorry to hear of your bone issues . I have changed my diet include lots of vitamin k2 foods and calcium foods too bone broths and kefir and things like this cheeses also raw if possible as it is better absorbed and of course the weight workouts with the weight vest that is not too heavy and just right for strengthening my bone and it seems to have worked have you tried natural approach at all it can really help as Ive heard bad things about that drug . perhaps it dont affect you now but can leave you with side effects down the line in yrs to come so natural is always the best way if possible

But I wish you well and hope you get strong soon

[mollyemma]

I was diagnosed with osteoporosis in 2016 saw a consultant who put me on a tablet that I had to take once a week it made me feel so ill couldn't tolerate it. She then suggested I have six monthly injections of Prolia which I agreed to, I have just had my sixth injection and I have to say with very little side effects. I do get a lot of stiffness in my legs but I also suffer from Polymylgia which I was taking steroids for but finished them a few months ago I never want to go on then again the side effects of taking them were far worse that any side effects I have experienced taking Prolia. Like you I am not advising anyone to take it but I think it's important that people know that everyone does not suffer the awful side effects. What does worry me is that I may have to come off the injection now I have had my sixth one and I have read that you can suffer rebound fractures ( I have fractured vertebrae s )I'm due to see my consultant in January so this is something I will be discussing with him.

[mollysuki in reply to mollyemma]

Why do you think you have to come off Prolia? You can be on it for 10+ years. Or in my case life. But I’m okay with that as I don’t want to ever go through the trauma of spinal fractures again. But each to their own. As long as you’re happy with your choices that’s the main thing 😊

[mollyemma]

I was having the injection at the hospital but GP agreed to give it and he mentioned that it was my last injection. As I said previously I have appointment with consultant in January so will discuss it with him. At my age (72) I would prefer to keep having injection and the previous consultant (she retired)said that the probability was that I would have injection for the rest of my life

[mollysuki in reply to mollyemma]

You could give the Royal Osteoporosis Society a call on the free helpline and talk to the specialist nurses.

[HeronNS in reply to mollyemma]

Yes, give the ROS a call. By now every doctor on the planet should know that it is not safe for any patient to suddenly stop taking Prolia, not without some other bone medication, and we are now learning that after the fact treatment is not always effective anyway. Depending how long you were on what I assume was a bisphosphonate you may actually be somewhat protected from the rebound osteoporosis effect. But surely you should be given the option to continue Prolia if its's the best choice for you?

[mollyemma]

Thanks a lot I might give them a ring

[mollysuki in reply to mollyemma]

theros.org.uk/