Seems to be virtually impossible to safely discontinue denosumab after starting it. Maybe the solution is to not start it in the first place? Certainly it should not be prescribed to younger patients who may therefore spend decades on this medication. As denosumab affects the immune system I'd think that alone would be a good reason to avoid it. Interesting discussion on this website:
melioguide.com/osteoporosis...
The comments at the end are also very interesting.
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Interesting article on Denosumab, plus the comments at the end. Problem is, that if, after weighing up the pros and cons and coming to the conclusion that taking some kind of OP drug would be beneficial, there is not a lot of choice. If AA and Risedronate do not suit then the choice is even less. Forteo (Forsteo) can only be administered for 18 months to 2 years and in the UK that will not be dished out too readily because of cost. There is not much else left to choose from. We are caught between a rock and a hard place. 
Yes, I think I should have made it more clear that the main problem really seems to be with giving it to younger (younger being a relative term in this context) patients because they are then kind of trapped. At least at the moment, until a good protocol is worked out to phase out the Prolia and prevent that rebound effect from happening. It must be disheartening to be on a medication which seems to work so well, and then discover the sting in the scorpion's tail. I kind of understand how this must feel, although of course the ramifications are much more minor, because when I started prednisone for PMR my doctor neglected to tell me it wasn't a cure, so I thought with the miracle relief that I'd be done and finished with it all in three months. So nearly three years later I know prednisone is my companion for the lang haul. Similarly the doctors had been thinking the brilliant improvement in bone density with Prolia meant the patients were well enough to discontinue it. I bet there are labs burning midnight oil trying to come up with a solution!
Check this site before you decide to take Prolia:
lawyersandsettlements.com/l...
How do you manage your osteopenia/osteoporosis diagnosis?
I have been on Prolia for five years. I was not warned of the impact upon the immune system nor the possibility that my dental health could suffer. I was unable to receive my scheduled injection in Nov 2017 due to problems with my immune system. I had two Shingles outbreaks in 2017 which led me to see an Infectious disease specialist. After getting the run around from him, I began to do my own research. I discovered that experts with the FDA voiced concerns regarding the negative impact upon the immune system prior to approval. I have determined that I will never use Prolia again. After the first two years to there was some improvement in my bone density scans but the last one on 2016 showed no additional improvement yet they continued to administer the medication. At no time did anyone in the medical field suggest Prolia as the reason for my repeat of Shingles. I had received the Zostex vaccine but it apparently wore off. I experienced multiple compression fractures of the thoracic vertebrae in January 2018. I had surgery on 6 vertebrae March 11,2018 and I don't know if the procedure was 100% effective yet. No more Prolia for me since it apparently does nothing to prevent compression fractures of the vertebrae. To he surgeon has already warned me that one the fractures start in the thoracic as mine did that others follow because the spine has lost it's structural integrity. No one should take Prolia.
It seems that almost all medicine has serious side effects ! I am sure its by design rather than fault by the drug companies
For some reason Facebook has decided to suggest I sign up for a Prolia discussion site. Now, how would Facebook know that I have discussed denosumab on other platforms?
Could be something to do with if you would rather your content was not 'searchable' via any Internet search engine and/or 'Shareable', on FB or Twitter, to make sure you select the visibility status of your post as visible to 'Only followers in my community (Hidden post)' before you click submit. If the original post or thread written by someone else has not been locked (and not many appear to be unfortunately) then none of the replies are locked either, so presumably can be shareable/searchable. This thread started by you is not locked.
That's really interesting and helpful Kaarina. I'm usually very good at these things, but hadn't realised this was necessary to avoid FB etc being able to access my posts.
Interesting. I suppose you have to decide then whether the information you're sharing should be widely disseminated, or just kept to a select few? Well, I usually don't post things unless I intend the contents to be accessible. The explanation makes some sense, except, how does one platform know my identity on other platforms? Unless FB has access to the private information in my profile.
Yes we do have to decide whether we wish the information we share is shared further than just on the forums we choose to join. I do not think enough emphasis is made on the different forums here to let members know about locking postings etc.
If a thread is not locked one has to decide whether one wishes to reply as the information you give could be shared on internet search engines and FB.
Importantly, HU may share locked posts on their FB page, but unless a FB member attempting to view that post is also a HU member of the community from which the post was shared, they won't be able to read more than the title and a few lines, nor will they be able to see the author or author's avatar.
I have no idea how FB has access to the private information in your profile. A question for HU/FB perhaps?
I suppose it's less sinister. Or maybe more sinister, depending.... Doubtless FB knows my age and knows the sorts of things which concern me and as is the way of these things they can target me with something they think I'll like. Of course they can't be right all the time. Just because I'm an aging female doesn't mean I'm automatically going to want to discuss a specific OP med. But I might have been someone like that, given the rest of what they've gleaned from my profile. Back when we had Stephen Harper as Prime Minister I was quite vocal in my dislike of his policies and what he was doing to the country and would share posts of hilarious songs suggesting he leave (Heave Steve) etc. In the end I started getting through FB all kinds of stuff about Stephen Harper, most of it neutral or positive! So even though I haven't really discussed osteoporosis on FB I've shared posts from Better Bones. So that is probably what's happened. Facebook is kind of like the person at the end of the chain in the game we played as kids where someone would whisper into the next person's ear, and it would be repeated a number of times and in the end the sentence would be completely turned around. They think they're getting the measure of me, but really they haven't. Cheers!
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Osteoporosis and HRT for the over 60s
Osteoporosis and Denosumab
Denosumab
I can't get on with the medications
Stoma with Denosumab osteoporosis medication
