Prolia black box warning?

I don't want to offend you. I have so many friends that have ended up with severe respiratory symptoms after the Cvid vax

Offend? Of course not! We are sharing important information so we can navigate our care for our different illnesses. I so appreciate all whom have told their stories. it helps each of us learn and apply to our own situations. Repeated infections, because of the state of my lungs, leads to a decrease in lung capacity... not good!
I am so glad to have been 'taught' by all regarding the potential problem that I am experiencing with Prolia. So my next step is to ask my G.P. to set up the plan for removing myself from the Prolia regime.
My policy is : You can live with bad bones... but you cannot live without lungs!!
I am sorry that your friend has developed this possible response to the Covid vax. Struggling for breath is a frightening thing, especially when one has been previously healthy!
The only thing one can say is; if this is the response to the vax... then how much worse would they be now, if they got the real virus? There are over 53,000 dead in Canada alone from this disease... it is a terrible way to die. Having respiratory illnesses all my life, I do understand your friends' struggles. I do hope they are getting good care and they will return to good health again soon.
All the best.

Thank you formisc for your info and support.
Yes, I am realising just how critic my timing is at this very moment... but I cannot get an appointment until 13 March.
I am very thankful for the Connect buddies who have educated me on this problem and my arthritis specialist who picked up on my track record since the Prolia started. --- the timing of the past 1 1/2 years is suspicious, when even for me that is a lot of infections, when I am practising such high levels of lung hygiene and isolation from people and masking at all times!
May I ask another question: What are the BTM tests that you are mentioning??
Thanks again for your input. [isn't Connect great?]

Due to loss of my ovaries at age 22 and 48, I went into early menopause with drop in estrogen. I was on hormone replacement for five years and when my doctor stopped that, I was started in Fosmax for about ten years. Fosmax improved my Dexa scan minimally so after ten years I was started on Prolia which was an injection every six months. My Dexa scan improved immensely. The one side effect was an increase in my cholesterol. I modified my diet and that improved things without going on statins. After 10 years, my doctor stopped Prolia because the research up to this point was showing it was safe up to 10 years. I had one IV dose of Reclast which did nothing to improve my bones. I was thne started on Fosmax for a year which also was minimally effective. In January of this year, I was started on Evenity and after two injections, I haven't noticed any side effects. I am supposed to be on this for a year and then switched back to maybe Prolia.

Good I'm glad your not offended. There are people that get very upset if anyone asks if their symptoms can be because of the vax. I am on Prolia, my major issue is bone pain.
Please make sure, I had to fight with my family doctor about changing from Prolia. Stopping Prolia without immediately continuing with alternate medication , can cause spinal fractures. It is a fact. I researched it and brought the proof to my doctor, I also spoke with my pharmacist about it. So please keep this in mind. Only then did my family look it up, all she said was "oh, I didn't know that".
You spoke about not being able to breathe. I have had that experience. I got Covid, was in hospital for almost 2 months. Must in ICU ,induced coma and had a tracheostomy. When you come out of severe Covid you are in a delirium, You don't remember or understand much. I didn't know what they were doing , but they were cleaning out the tracheostomy tube , when they do that , they remove the covering and then there is no access to air, not through your nose or mouth. Yes it is the most terrifying thing I have ever experienced. but not as bad once I realized what they were doing.
Broken bones aren't as bad as not being able to breathe , but broken vertebrates can effect your breathing too.
Every medicine you take causes side effects , just have to find which side effects you're willing to live with.
I still say injectables are the worst , once there in your body , there isn't much you can do. My date for new injection is July. I'm insisting on taking a medicine by mouth at that time.
Please take care of yourself. No one cares about your well being more than you.

I get Prolia shots the past 4 years. I discovered I had osteoporosis after my Heptologist request a bone scan for me. My kidneys have been damaged by Prograf/Tacrolimus immune surpressants for a liver transplant for the past 18 years at that time. My Nephrologist and Heptologist both said Prolia is ok for me to take. Do far my recent bone scan showed an improvement in my bone strength. I have had 2 liver transplants over the past 24 years.

Hi rubyt,
You have a story to tell! And you are here to tell it! You have done great things!
Thanks for the tips; yes, talking to my GP might be 'touchy' but it must be done. I have made an appointment with my pharmacist; they are the masters of drugs and I want to have as much info ready for my chat. I also have a call into my respirologist for his opinion of this situation.
You are so right about living with the side effects that you can, but I cannot keep having a high rate of lung infections which will cause more damage to my already haggard lungs!
I wish you all the best as you navigate through these issues -- not for the faint-hearted is it??

Hi Christine,

You mentioned that your next appointment is on 13 Mar. Is this earlier or later than 6 months after your last Prolia shot? Because even if you were to be prescribed Alendronate on that date, it may not be the day of choice for your weekly dosage and any delay beyond 6 months adds more risk. In fact, Prolia can wear off earlier, say 5 months, in some people and later, say 7 months, in others. 6 months is just a convenient period that doctors have decided on. Hence, my earlier suggestion to start Alendronate a little earlier if possible.

And if you cannot get an earlier appointment, i would even consider "borrowing" 1 or 2 tablets off someone! In fact, it would be an opportunity to test if there are any significant side-effects before commiting to the full 3 or 6 months' prescription.

From your question, i guess that, like me, your doctor did not do any BTM (bone turnover marker) tests prior to starting you on your osteo meds which is a shame as they would be very useful as a baseline for comparison and they would have guided the doctor on the appropriate choice of med. The 2 main BTMs that are widely accepted are CTX which measures resorption/bone-breakdown activity and P1NP which measures bone-building activity. Personally, as i did not have any previous BTMs done, i will opt for tests for both CTX and P1NP plus maybe PTH (for parathyroid - high PTH can cause bone loss), calcium and Vitamin D.

For Prolia and anti-resorptives in general and when transitioning from Prolia, CTX is useful to show how effective the med is in decreasing resorption activity. Prolia has a very quick and powerful effect of reducing CTX but once you stop taking Prolia, the CTX shoots right back up because of increased resorption activity that was previously suppressed and this is where the risk of multiple fractures comes in. So, when you transition from Prolia, you need to monitor your CTX numbers closely (every 3 months is best) to determine if your choice of relay drug is working. Without having any baseline numbers to compare with, you, like me, will have to rely on reference ranges of healthy women and absolute numbers. I am still looking for more info but from what i have read so far, i think i would be comfortable with a range for CTX of between 200-400 but may get worried if it was say, 800 and higher. Btw, CTX needs to be fasting, early and at consistent times.

If you wish to read up more on bone markers, you can click on my user name and it will lead you to another discussion which i started called "Support For Those Quitting Prolia" where i posted links to various articles on BTMs.

At this point, i should at least let you know that there is still much debate about how useful exactly BTMs are. Some of it is due to the variability of readings caused by various factors - time, fasting state, other meds etc. But given that our only other monitoring tool is DXA which is once every 1 or 2 years, i guess it's better than nothing

I seem to be thanking you a lot!
I appreciate you taking this time to reply and for your info.
Tomorrow (as it is late here) I will call the doctors office for hopefully a cancelled appt. I have been reading medical reports and research today - 🙃- The other thing I will be doing is checking out " the quitting prolia" discussion.
I have an idea of whom I can get some Fosamax from!
I'll be in touch as this all unfolds.
Thanks again, and all the best to you and our fellow travellers! ...c

I hope you will be able to get an early appointment. Because ideally, you want to do your BTM (and DXA if due) before starting on a new drug