If you have gotten off Prolia after SEVERAL YEARS on this drug, how did you do it?
What drugs? How administered? Did you start process while still on Prolia? Anything from people who got off Prolia successfully would be appreciated!
Prolia is destroying me (as noted in other posts) but when it was stopped years ago many bones broke.
I'm back on it now and am afraid to get off without a safe plan. I'm looking for ideas about this. I'm worried that using other osteoporosis drugs with different modes of action would still create risk of fractures because of stopping Prolia.
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Viazoy
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Hi Joan - we've been in touch before via your blog. I see you've recently posted a reply to another person who posed a question about how to wean off Prolia. Did you see my response to her about how I'm doing it? I was only on Prolia for two years, so not a long time, but this might give you some ideas: healthunlocked.com/american...
Thank you! I'll look at this! I was hoping that maybe starting on another "bone drug" before stopping Prolia would help but I was afraid it might not because the second drug might have a different mode of action! Let me look at your post again and get back to you! I appreciate your help!
Joan, someone on the Inspire site to which I contribute made me aware of a person called Endodoc who has devised a protocol for getting off Prolia which involves either cutting down the Prolia to half strength, so effectively weaning off if by reducing the dosage or starting a relay drug before the six months of the last Prolia injection is up: inspire.com/groups/national... You would find this really intersting and possibly useful in your case. It might be worthwhile getting in touch with Endodoc as he certainly appears extremely knowledgeable and is across all the issues with Prolia.
Re cutting the dose - Prolia comes in a tiny bottle with a needle that the doctor or nurse injects. I never touch that bottle. And I don't think they'd cut it in half for me! (And that might still be a problem in terms of more withdrawal fractures). This is a major medical center with experienced specialists but I'll try to get to Endodoc here!
If you were to have a half dose as per Dr Aliya Khan's protocol (which I mention in a post below), presumably all the person administering the Prolia shot would do is stop injecting when the syringe is half empty and dispose of the rest.
I have been following Endodoc on Inspire and fully agree with your comments with respect to his expertise. The idea of a reduced dose of Prolia originates with Canadian endocrinologist Dr. Aliya Khan who Endodoc refers to as his 'superb colleague.' Dr. Khan is a scientific advisor to the IOF.
Thanks for pointing that out, lilo789 - so the protocol was not devised by Endodoc as I had thought.
I found the paper published by Dr Aliya Khan which describes this off-label method of treating patients on Prolia with a lower maintenance dose to support transitioning off it without loss of BMD or risk of rebound fractures: endocrinologynetwork.com/vi...
Thanks for that, lilo789. Dr Khan's webinar was certainly informative and educational. What an engaging speaker she is too! The questions at the end were very interesting as well, especially the one about body weight and medication dosage - something I've often wondered about.
I'm going to have a look for more of Dr Khan's presentations as I learned a lot from this one.
Yes I do remember this and I appreciate it. And I will ask my doctor specifically about this method. But I'm really frightened because of the experience I've had! I just cannot afford to get off Prolia without a safe plan! I've lost too much already! A little over a year ago my doctor retired. And it turned out the replacement doctor was booked up and they told me I couldn't get my shot until I saw her, and that would be several weeks after that shot was due. I thought they knew what they were doing, They didn't. Just a few weeks after that shot was due (when I was waiting to see the new doctor and get that Prolia shot) I had a backache like I've never had before in my life. It scared me and with great pain I managed to get myself to the ER in a cab where they told me I had THREE vertebral fractures! (Two thoracic and one lumbar) When the new doctor learned of this she said it was because my Prolia shot was late!!!! She explained Prolia's unique mode of action and that when you stop it, you can lose the bone it saved -- and more!!!! (I'm trying to describe this briefly; it took them longer to explain it). So you can imagine how frightened I am to stop Prolia again without a safe replacement!!! And even getting a drug with a different mode of action might not protect from more damage from stopping Prolia. And I should add: You cannot just "reduce" the dose. (At least I wouldn't know how). It is in a little vial that is injected. It's not like a pill that you could cut in half.
I really can understand how terrifying this is for you. I was worried out of my mind for the first 12 months since I started on the relay drug, thinking every twinge was the start of a fracture, but have relaxed a bit more in the past 3 months as I (hopefully) get beyond the danger period. Your situation is obviously different and far more complicated with your multiple fractures, and you can't afford to have any more and make the situation worse. I suppose it's all about taking a (informed) leap of faith and getting onto a relay drug, but you need to feel very confident that you are using an appropriate drug and under the care of a knowledgeable endocrinologist. Perhaps it's worthwhile sending Endodoc a message to see if he has any ideas about your case? You've got nothing to lose if you're desperate to get off Prolia.
I was trying to find Endodoc but could not - I sort of remember seeing a name like this but can't recall where! I've learned to live a bit with the fractures -- the immobility and the pain. But I don't think I would do very well with the blindness now that Prolia is attacking my retinas! I get the shots (Eylea) in my eye but as the retina specialist explains it, these shots are like fire extinguishers and Prolia just keeps feeding the fire!
I should add I've looked for Lamy's work - it's complicated -- I couldn't do it on my own. See one of his abstracts and a list of other articles at: pubmed.ncbi.nlm.nih.gov/306...
But I don't have access to a medical library for full text.
Thank you. I have this article. The protocol is very complicated and requires prescription drugs and I could not do this on my own. I am showing it to my doctors however.
hi Viazoy, I'm very sorry to hear about your bad experience. Being late for a Prolia dose by even a few weeks or a month can pose risk of rapid bone turnover, loss of bone density, and multiple vertebral fractures such as you experienced. (This was a concern during the COVID pandemic when availability of clinical services was limited.)
The recommendation is not to discontinue Prolia without beginning another medicine. This is typically a bisphosphonate (daily oral or once-a-year injection). The danger is in stopping Prolia without a relay drug.
I don't know a lot about Prolia, but I have heard specialists talk about using a reduced dose in certain scenarios, as Arcadia10 mentioned. It might be an "off label" use of the drug, so you would need to find someone who really knows what they are doing.
The most important thing is have a plan in place to start another medicine before you stop Prolia.
I should add, getting on a new drug (which I would love to do because of the retinal macular degeneration I am experiencing because of Prolia that threatens my eyesight) may not be so easy because different osteoporosis drugs have different modes of action. I am hoping that I can find one that I could safely start and then safely get off Prolia. As to a "smaller dose" again, even if I could get someone to reduce the amount in the prepackaged vials I have no evidence about the safety of this. So far neither the osteoporosis specialists I have been in touch with nor the manufacturer of the drug seem to have practical information about this.
Joan, I was looking at an update on the Inspire website to which I posted the link in regard to trying to put you in touch with Endodoc: inspire.com/groups/national... Sunshinegirl33 at the end of the posts asked Endodoc about getting an appointment with Dr Aliya Khan who consults in Toronto. She is a top bone endocrinologist and the person who describes using 30 mg of Prolia (so a half dose) to maintain BMD and prevent rebound fractures as a maintenance dose while transitioning off Prolia: endocrinologynetwork.com/vi... (not Endodoc, as I had thought).
Do you think it might be worth your while to try to make contact with her and perhaps arrange a teleconsultation? As lilo789 above mentions, she is highly credentialled and hopefully would be across all your issues and, if there are gaps, I'm sure would be interested in assisting as she is obviously a top researcher. Here is her bio which includes email address: boneresearch.ca/dr-khan/
Endodoc says she is a "real sweetheart" which is good to know!
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