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Prolia infusions

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Posted 4/5/2015 9:22 PM (GMT 0)
Has anyone had these infusions for building up bones? I had 2 in 2014 and have since stopped due to side effects. They are given every 6 months.

My most serious side effect has been bone coming through the gum which can be quite painful. While it is a rare side effect, please be aware of this if prescribed for you. Some of my bones have been chipped away by a dentist if they became loose, or if the bone has become so sharp so that it is makes sores on my tongue, the bone has been filed down to get rid of the sharp edge. The long term hope is that more tissue will finally cover this bone and give me relief of pain. Is it tolerable throughout the day except with edges are sharp and eating becomes a problem.

Just a warning to be careful if your dr prescribes this drug for osteopenia or osteoporosis.
Posted 4/5/2015 10:24 PM (GMT 0)
Hi Scorpio girl... So sorry you've had to experience that (assuming you're talking about ONJ?)

Prolia/denosumab is supposed to be safer than older osteoporosis meds (the bisphosphonates) in that respect so it sounds like you got really unlucky. I was on Prolia for a couple of years too...and actually put on that by my endo in preference to other types of med because I'd had a "spontaneous" occurrence of ONJ two years or so before that. I didn't want any meds because of that - but I had multiple fractures across eight vertebrae because my bones were so bad.

Has it improved your bone density? I also ended up stopping it because of side effects (such severe muscle & joint pain I literally could not get out of bed for 4-5 weeks after each injection, and constant problems with cellulitis and UTIs). But the one thing I can say for it is that it did what it says on the tin...my markers for bone breakdown were phenomenally high...At least one was something like 50x out of the reference range, and they did come down to just above normal.
Posted 4/6/2015 1:59 AM (GMT 0)
Patient, thanks so much for the response. My bone density was "normal with osteoporosis" so I am assuming it has improved. I have not had any major bone problems--but the side effect with the mouth has given me good reason to stop. I have not yet progressed to ONJ and hopefully will not. I am relatively healthy 65 y.o. I have only had broken toes and fingers.. I have had multiple UTI infections, skin rashes that have discolored my neck and the joint pain since Prolia. While the Prolia is an excellent drug for what it is to help,to me the side effects I have had are not worth it.

My doctor has backed me on this decision. Hope I never regret my choice. I am so sorry you have suffered with so many bone problems...I know it has been painful for you, but at least Prolia was beneficial to you in some way.
Posted 4/6/2015 5:17 AM (GMT 0)
I'm glad your doctor backed you. I ended up making the decision not to go back to my endo (who was prescribing it) as it was a group through the public hospital dept - and though the main professor took me seriously enough when I raised the side effects I was having (had already had a fight with him over something else and turned out that was the way to win his respect as his was a bit of a pompous **** otherwise) his juniors told me I was either making it up or exaggerating and "had" to stay on the drug :-/

Thankfully my GP is a really good bloke and when I told him I was coming off it and not going back, he just laughed and said he trusted me to know my own mind and advocate for myself.

Sorry you've had the same bundle of extra side effects too. I do think it's one of those drugs that can be enormously beneficial - but perhaps sometimes is trotted out too quickly without them making patients fully aware of the risks.
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