Missed prolia injection: Missed my 6monthly... - Bone Health

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Missed prolia injection

Caz137
Caz137

Missed my 6monthly injection of prolia because of corona virus. Will I have any problems whilst waiting for another appointment

22 Replies
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I wish Corona had been around to have stopped MY last injection, the 4th one that sent me spiralling. I never really needed prolia . If you have really bad bones, I dont know what to tell you except find a holistic doctor. Since prolia ruined my life, I can't find a doctor who can diagnose my strange conditions, let alone cure them. Read here what it does to people. Good luck finding a knowledgeable doctor.

sweetsusie
sweetsusie
in reply to andie55

I'm so sorry, andie55, that this has happened to you....these awful meds. should all be taken off the market and totally banned...Worldwide...

As long as Big Pharma keeps getting their way, that drug will stay in place. I wish there was some way we could stop all the madness. There are at least 15% of us seeing bad effects. What more should there be to STOP it already!!! Doctors are brainwashed to tell their patients it's ok, it's ok. Doctors are not listening or caring about us. I feel as mad as a hatter!

Jhnard
Jhnard
in reply to andie55

I was due for my third shot 2 weeks ago and decided that this was an omen for me to get off the roller coaster. Thinking through options, but not returning to Prolia! Your response just makes my decision a whole lot easier. Good luck with your road back to normalcy!

Good for YOU. How I wish someone had let me know this earlier too! For people with truly bad bones I supposed going cold turkey as I did after four injections might not be wise, but I went for it. Two years later, my bones feel the same, but I am looking for answers to what Prolia did to my nervous system! Maybe one day a doctor will read this forum and have answsers for me, where to go for help. So many at this forum are suffering from random things. Enjoy your life Prolia free, Jhnard.

Thanks and great to hear that you’ve had no bone fractures since you stopped taking the Prolia. Did you add any additional supplements or do anything different to prevent this from happening? Sure hope you get answers concerning your nervous system and even better hope that time will make this better!

Hi,

You have not said how many injections you have already had, or when your next injection was due to be given.

If you have only had one injection you will be ok.

If you have had 2 or more then you must either have your next injection or be given an alternative to take in tablet form.

Prolia is renowned for rebound fractures if once stopped then some other form of treatment MUST be given to avoid this happening.

You need to contact your doctor who put you on the injections.

I do know that for people who are not vulnerable Prolia can be given under safe conditions.

Please do not take the risk by playing the waiting game, there are many people who have had multiple rebound fractures by not following the treatment up with some other form of treatment once stopping Prolia.

I'm assuming you receive your injection at your doctors office? Doctor's offices have been open. Just received my injection. All furniture in the exam room are cleaned after each patient using disinfecting wipes. All staff including office personnel wear masks. For your self, I hope your wearing a face mask and gloves when leaving home and keeping 6 feet apart from others.

Caz137
Caz137
in reply to maryknapp12

No I go to the rheumatology department at the hospital

Hi I went 7 months without my injection this was my 5th one. I had to insist and contacted the complaints dept. at the hospital and emphasise the risks of rebound fractures. My bone density is very bad. I really did need the injection though as I was experiencing so much pain in the bottom of my spine also my thigh bones were hurting, I was getting terrible Sciatica type pain. The hospital did give the injection in the end. It shouldn't be left unless they are prepared to give you an alternative treatment. This is really not optional it has to be given. I think it would be medical negligence if you go onto fracture.

Caz137, how many Prolia injections have you had already?? I had one around March 2019 and decided to stop right then after experiencing some side effects such as pains in my head, increased fatigue and increased lower back pain. Then I noticed a ridge on my upper gum. I already had a routine appointment for the next day with my dentist so I asked him about this ridge. He asked if I was on Prolia and when I said that I'd had the first injection about three weeks earlier he advised me to stop it. He said the ridge was a bony growth caused by Prolia and that Prolia was a very bad drug. I did some reading and found this site - there is a LOT of information here about Prolia.

However, if you have been on the drug for a year or more it may be worse to stop it...there are people here who know more about that than I do

As Sunseaandsand says, it's essential to have your regular Prolia injection. Some consultants appear unaware of the risk of rebound fracture if you miss or delay one of your injections. If they're unable to give it to you at this time, then you should be put on a bisphosphonate (eg Alendronic Acid) to reduce the risk of fracture. If you can't get hold of your consultant, ask your GP to prescribe AA, and if that fails too, you could raise your concerns with PALS (Patient Advice and Liaison Service) and ask them to pursue it on your behalf, ensuring they are aware of the serious risks of missing an injection.

I broke several vertebrae as a result of missing one shot. And all I did was pull a suite case out of the car. However it doesn’t mean it will happen to you.

My advice would be to try and get the shot as soon as you can.

One good thing. I have been very careful not to miss any of my

appointments and my bones are now denser.

Good luck. Stay safe!

I think it will make very little difference that your infusion is delayed. These things happen and the positive benefits stay a long time in the bones. Twice a year is a sort of average, good balance, but however long you wait, - it is much better for your bones and whole person if you keep away from hospitals and clinics as much as poss and DON'T get Covid!

best wishes,

Trish

Met00
Met00
in reply to Trisha46

Unfortunately some people have had rebound fractures within weeks of missing a prolia injection, which works differently from bisphosphonate infusions. The risk of rebound fractures on stopping prolia is now well-documented, and for this reason it's considered essential to have follow-on injections on time, unless an alternative (usually bisphosphonate) treatment is started at the time that the prolia injection was due. theros.org.uk/healthcare-pr...

catno1
catno1
in reply to Trisha46

Have a quick search of 'Prolia Vertebral fractures' on the site please. These injections have to be given every 6 months. As for staying in your bones Prolia does NOT work like other bisophosphate drugs. Too many of us on here already know that, myself included. Four injections later and too many side effects to continue Prolia as well as a Dr with zero knowledge of how you MUST be put on bisophosphate drugs immediately 6 months after your last Prolia injection and I had multiple vertebral fractures and a slipped disc and nerve damage for free.

Apologies for sounding rather hard but just because a drug works similarly to another does not mean withdrawal from it is the same. Bone is swiftly broken down and for many people means a huge change of life after fractures that will cause lifelong problems. I'm 52. There are women on here younger than me and older that now wish they had never heard of Prolia.

Please take care, x

HeronNS
HeronNS
in reply to Trisha46

This is not true of Prolia. Stopping this drug can cause rebound osteoporosis worse than the original condition - and very soon after missing a dose.

ROSAdmin2
ROSAdmin2Administrator

Hi Caz137, you are very welcome to ring the Royal Osteoporosis Society Helpline to talk this through with one of the osteoporosis specialist nurses. Our freephone number is 0808 800 0035 and we're open between 9am and 1pm Monday to Friday.

We also have information on Prolia (denosumab) on our website and the importance of not missing a dose during the coronavirus pandemic, and what to do if you have - click theros.org.uk/information-a... and scroll down to the section 'Managing your osteoporosis and bone health: Your treatment'.

Please do something immediately because rebound vertebral fractures aren't good. Search on this site and see how many of us have sadly suffered not helped by typically lack of knowledge or support from our alleged 'Consultants'. Prolia does NOT work or keep you safe unless you have regular injections. When stopped it has a negative impact and strips the bone swiftly. You may be lucky but is it worth the chance? Search 'Prolia vertebral fractures' and have a good read please.

Hello Caz137

Sorry you are having problems, I hope by now you have been able to get in touch with the ROS helpline, re getting help via your GP or getting an alterative bone medication as a stop gap.

I've had problems with rebound fractures so have done personal research and asked questions etc. I understand that if you had a course of bisphosphonate before staring on Prolia (or any other bone medication ) then you may still have a little protection, but stopping Prolia / delaying for more than 2-3 weeks is not safe.

Prolia is a very strong drug on this site sadly you'll find people who have had bad reactions to it or like me where not offered an alterative medication on stopping for a suggested break from the treatment. My fractures did not occur until 4 months after stopping, but I understand the sudden loss can happen after only weeks.

On a positive note by having Prolia for 5 years I made excellent progress moving from the mid OS range into the mid Osteopenia (just at the time in the UK & Europe hospitals where only just taking on board the rebound problems as warned by the manufactures saddy I lost most of the gain and ended up with fratures).

Good luck in getting this sorted out.

Best Wishes

Posy White

My GP, when I saw him in February suggested the six monthly injections. Because of the current situation, I haven’t had a follow up appointment. I have, however, had a letter from the hospital to say that I am on the waiting list to see a rheumatologist. I am hoping to be offered the yearly infusion as that seems the better option.

Please let us know how you get on. You MUST have either your scheduled Prolia or another bone protecting drug asap. Prolia is a new class of drugs which doesn't linger in the bones like the older bisphosphonates and missing a dose can cause rebound osteoporosis worse than the original condition. People who stop Prolia (after one dose is supposed to be okay, after the second dose the danger is very real already) are put onto another medication to get them through the next couple of years until after effects of Prolia have worn off.

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