Haven't posted in a while but been keeping up. Would like some feedback on my latest experience. Fell in Feb. and fractured my spine. Recovered well and back golfing in 10 weeks (9 holes to start). Doc. decided I need to have osteoporosis meds in case I fell again. Waiting for bone density tests to be done. He decided to go ahead with an injection of prolia last Mon. Thurs. evening couldn't breathe - airways closing - had a seizure - violent shaking - thought my bones were going to break - terrible headache - frequent urination. Got myself to bed thinking it was the flu. Spent next day in bed - no better - had to get up every 2 hrs to pee. Finally re-read the pamphlet that came with the injection and there were the same symptoms. Went to doc. He had told me there were no adverse side effects. Boy was he wrong. Now it's in my system. Waiting for bloodwork and urine test results.
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It will be interesting to see how the numbers compare after 5 years. Fabulous that you got back to golfing so soon. I will get a scan in the fall and see how my numbers compare to two years ago.
OMG, what a pickle from the prolix. How frightening. I hope the side effects subside soon. What was your doctor’s rush? I suspect he felt remiss in not having you get a DEXA scan months ago, and prescribing prolix based on those results.
Sorry to hear about your prolia side effects, you've definitely reacted but how can the doctor say what he said, poor you, I hope things start to improve for you. I cannot help you at all with your query but wanted to say I love your name!
Well done for having the strength of character to get back to your golf. I am amazed that you put yourself to bed assuming that you had flu, rather than calling an ambulance which is what I would have done.
The doctor is lucky that he’s not facing a malpractice suit. Unless you are suing him. Telling you that there would be no adverse effects was not something that he could promise. Also he should have waited for your DEXA results. I feel appalled on your behalf. I sincerely hope this hasn’t done lasting damage. Let us know. Be very cautious about these meds in the future. People on here safeguard their bone health with supplements, good diet and exercise ( not all, but a significant proportion).
Hi Sheffield Jane: I have always taken care of my health with supplements etc. and have led an active lifestyle so these fractures were a wake up call. I certainly will be questioning any new meds from now on. Thanks for your caring.
This problem (early vertebral or pelvic fractures after discontinuation of Prolia)
seems to be the dirty little problem that Amgen was aware of well before the black box warnings came into effect. In the meantime countless sufferers are sustaining unexplainable fractures of the vertebrae, and in my case my sacrum as well.
The drop in bone density (after Prolia discontiuation) with out switching to an alternative modality is well understood and has been for some time. I was never warned of this 1.5 years ago, and as a result am suffering the consequences. When I started Prolia, no warning was given. I would like to poll this group to get some idea of those affected in different locals...i.e Canada/England/U.S./other.
I believe there is a strong case for a class action suit where there were no warnings from the manufacturer or those Doctors prescribing for big pharma.
Get rid of the Dr.! He should have waited for results of Dexa Scan before prescribing anything. I had Prolio and got PMR shortly after last shot. I sort of assumed causality but had no way of knowing. All of these drugs are very strong and obviously have lots of side effects.
Hi Sandy: Can't get rid of doctor but will question him more thoroughly on any new meds prescribed. Have heard of flu shot triggering PMR so not surprised that Prolio did. Take care of yourself.
Do you have proof of his statement? Because you took the Prolia without what is called "informed consent" - I'd be kicking up a stink.
Particularly in view of the fact that it has been established that using Prolia is not a short term, take it for a couple of years and stop, process. There is evidence of rebound loss of bone density after the course of Prolia is finished and then you have to switch to bisphosphonates - which is what most patients were aiming to avoid in the first place.
You can have spinal fractures without them being due to osteoporosis, and you had yours as the result of a fall. Osteoporitic ones tend to be spontaneous. Nothing would have persuaded me to have a Prolia infusion WITHOUT the results of the dexascan. Disgusting...
Hi PMRPro: No proof or witnesses I'm afraid. I was avoiding taking Fasomax again - took it for a long time previously and came off it about 3 yrs ago. ER doc in Yuma said that he did not think I had osteoporosis but that the fractures were the result of how I fell. Oh well - what's done is done and I just want to get my life back on track. Will keep you posted on how this pans out. Thanks for being there for all of us.
Am keeping my notes and have told doc. no more shots. Got call re bone density test - will be done in July. Long waiting list. Feeling better every day but concerned about what is happening to my system. Bloodwork and urine tests were fine so no worries there. Thanks for your concern - you are always in our corner.
Wow, sounds awful. Seriously, any time your airway is closing, call for emergency help. It's an allergic reaction that can progress to suffocation. It's better to call for help and find out you are improving and didn't need it than to wait and risk it getting worse.
Thank you all for replying. I posted this to make more people aware of these side effects. Still waiting for results of bloodwork and urine test. Still no bone density test. Am dealing with having to pee every couple of hours but everything else seems to have calmed down. Can't get rid of doctor - doctor shortage here in BC (Canada) and he did this as a preventive measure in case I had another fall. Will keep you all posted on my results and what my next steps will be. Thank you all again - great having this site for support.
I had my first Prolia injection Feb this year. Due to a slow recovery of a badly sprained ankle while on long term high dose steroids for PMR/GCA, my rheumatologist ordered a dexa scan. T score was -4 so I am severely osteoporodic, despite being very fit and healthy, eating well and taking calcium and all the right supplements for years. I have to say I had relatively minor side effects, although at the time I wasn’t sure. I had a new crown on a tooth and also dropped a mg of my prednisone that same week of the needle. I developed a sore jaw and a sore temple along with some increased but manageable aches and pain and thought either the GCA was returning, the crown on my tooth was too high, my reduced pred was causing either a flare or withdrawal symptoms, or it was Prolia side effects. I had the crown lowered and the temple soreness disappeared, I increased the pred for 4 days but made no difference so it wasn’t a flare, and all symptoms disappeared in a week so it was either my body adjusting to the new pred dose for a few days or Prolia side effects. In saying all of that, a few days of extra rest and an extra dose of panadol and I was good to go and wonderful ever since. I hope my future injections don’t cause any of the terrible reactions you have experienced you poor thing, I would have been very frightened and taken myself to hospital I think. As PMRPro said, I have been told I will need Prolia (or something) for life, even though my dr told me pre-needle it would only be for 3 years. He has since admitted once on it you can’t go off it. Not happy but with my results/risk factors I can’t risk a break. Such is life....but at least I have one. 💪
I agree - I can't risk another fracture. Although ER doctor said it was more the way I fell than a weakness in my bones. Still - I want to go on with my life as it is so will consider another injection. I was not aware that once on prolia you can't go off it. Thanks for the info on this site - it certainly gives us all a "heads up".
This problem (early vertebral or pelvic fractures after discontinuation of Prolia)
seems to be the dirty little problem that Amgen was aware of well before the black box warnings came into effect. In the meantime countless sufferers are sustaining unexplainable fractures of the vertebrae, and in my case my sacrum as well.
The drop in bone density (after Prolia discontiuation) with out switching to an alternative modality is well understood and has been for some time. I was never warned of this 1.5 years ago, and as a result am suffering the consequences. When I started Prolia, no warning was given. I would like to poll this group to get some idea of those affected in different locals...i.e Canada/England/U.S./other.
I believe there is a strong case for a class action suit where there were no warnings from the manufacturer or those Doctors prescribing for big pharma.
Finally got my bone scan last week. Only area of concern is spine - shows 4% decrease in bone density. Effects of reaction to prolia lasted 4 days and I've been fine since. Have to make a decision re another injection in October. Don't want to go on Fosamax so don't have much choice. Thanks for asking.
You do realise that if you have Prolia for a couple of years or so it seems you will then either have to continue with Prolia or go onto a bisphosphonate of some sort to prevent the rebound loss of density they have now discovered happens? I would ask your doctors about it.
Thanks PMPro. Yes I am aware of this - this site has given me so much info. This will be discussed at my next doc appointment. I'm doing all I can re supplements and exercise so hoping for the best. Thanks again.
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