Priolia injection & side effects : I’m a 5... - Bone Health

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Priolia injection & side effects

Bupi
Bupi
26 Replies

I’m a 56 white female in menopause from 45

My gynecologist prescribed Priolia as I had advanced Osteopenia

My first injection was in Oct 2016 Everthing seemed alright Plus my density levels stayed stable so had second injection April 2017

In May 2017 my nightmare started All of a sudden my whole body ( from the tip of my head to the soles of my feet ) was in constant PAIN swelling I walked around for 2 months not knowing what was wrong with me Finally saw a rheumatologist did a huge amount of blood work then Cortisone meds etc After no success as symptoms where not rheumatically related She diagnosed me with Fibromyalgia and prescribed Cymalta ( anti depressant ) Which I did not resort too as didn’t believe I have Fibro Subsequent side effects have been hair loss for well over a year eczema foot infections and hives Still continued with my 6 monthly Priolia injection

During the last year my pain subsides slightly( for a month ) and then flares up to the point of I’m incapable of doing anything Very miserable sleepless painful days and nights And heightened depression.The worst being everyone told me it was psychosomatic I am due to have Priolia agin in Oct 2018

Went onto Priolia”s site to read hard facts that I’m sorry I had not read before !!!!!;

ALL my doctors ( Rheuma Gyni Lung Dermo and Pathologist ) NONE had come up with maybe ALL this could have been due to Priolia side effects ????

Today 19 Sept went to a new gynecologist and finally he confirmed ALL my symptoms were very viable to be side effects of Priolia Agreed I should stop Priolia And go onto Livial ( obviously has side effects ) but I’m willing to try it

Feel relieved and finally after so long realize it def wasn’t psychosomatic!!!

Tho hair still falling out but taking vitamins and can only hope things will get better Know of course there are after effects having taken Prolia but I’m personally willing to take the risk

If anyone has had similar effects would appreciate hearing how you have dealt with it

26 Replies
oldestnewest
HeronNS

duplicate post? I replied on the other one.

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Bupi
Bupi
in reply to HeronNS

I’m sorry to have deleted our thread

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Bupi
Bupi
in reply to HeronNS

Couldn’t even get that right 😇🤣

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HeronNS
HeronNS
in reply to Bupi

Oh well. And I have no idea what I wrote. Never mind, it probably wasn't that useful, I know I told you how sorry I was you'd had to endure these side effects. And perhaps remarked that you must take another medication now to avoid risking the rebound osteoporosis Prolia (denosumab) can cause when it's discontinued. Just make sure the new medication you're being prescribed will actually work to do that. The medications I've heard being used for this purpose are Forteo (teriparatide) or one of the bisphosphates. I think Livial is a kind of hormone replacement therapy? Teriparatide works to encourage the growth of new bone, the bisphosphonates carry on what denosumab was doing, suppressing the cells which remove old bone.

When Prolia is discontinued the suppressed osteoclasts suddenly start working overtime to remove old bone. This rebound is not known to occur with bisphosphonates, although with extended use they have their own problems, so I expect they are used until the aftereffects of stopping Prolia are gone.

If you find out whether and how Livial exactly works to prevent the Prolia rebound osteoporosis we will all be very interested to hear about it.

1 like
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Bupi
Bupi
in reply to HeronNS

Really want to “Thank YOU .... and others for ALL your input and kindness REALLY means a lot 🤗And whatever you wrote was very helpful

Will definitely look into Livial think u are right it being HYR ( as we said their are no meds without “ side effects ” )

But at least one should be able to lead a somewhat normal healthy pain free life

New gyni also said it was to early to have been put onto Prolia

Today seems to b one of those bad days

Tho am very interested to know how long “after effects” take to leave ones system

( I needed to injections and 2 months thereafter for symptoms to flare !!!)

Been 2.5 months of hair loss treatment

Still see no improvement at all

But being here has helped me so much !!!

Once again thank you ALL so much

Xxx

1 like
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Kaarina
Kaarina
in reply to Bupi

Please stay with us Bupi and let us know how you are and how things are going for you. Heron remembered very well what she originally wrote. ;) I hope your day is going okay-ish. :)

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Kaarina

Hi Bupi, it would be good if you could delete this posting as you appear to have two identical threads which could cause complications when people reply. ;) It is easy to do. Go to 'More' under this duplicate thread and click on delete and it will disappear. :)

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Bupi
Bupi
in reply to Kaarina

Kaarina Afraid not that easy for me 🤔As I can’t see / find link 😬 despite investigating 🤗So please bear with me x

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Kaarina
Kaarina
in reply to Bupi

OK Bupi, no problem. :)

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Bupi
Bupi
in reply to Kaarina

Managed to delete ( but the wrong one ) 🤣

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Kaarina
Kaarina
in reply to Bupi

Hi Bupi,

I am sure Heron will understand. Good for you for finding out how to delete and amend your own posts though. Not so many members are aware of this facility. I am sorry to read what has happened to you while having Prolia injections. I too wonder why you were given the injections in the first place as you say that you were diagnosed with osteopenia, even if advanced, but not osteoporosis. There are other members on this forum who have been affected negatively by this drug. I am sorry to read your story and hope things improve for you soon. Take care. :)

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Bupi
Bupi
in reply to Kaarina

Thank you Kaarina Nice to be able to share and finally find the cause Tho a pity it took so long !!! But yes believe & hope things will change for the better Not only for myself but what seems to be for so many other too

x

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HeronNS
HeronNS
in reply to Kaarina

Kaarina, isn't there a way doctors, if not patients, can report adverse effects from prescription medications? Bupi, where do you live?

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Met00
Met00
in reply to HeronNS

In the UK, here's the link to reporting online: yellowcard.mhra.gov.uk/

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HeronNS
HeronNS
in reply to Met00

Bupi - you CAN have your side effects reported.

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Bupi
Bupi
in reply to Met00

I’ll do anything to help others too

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Kaarina
Kaarina
in reply to HeronNS

Hi Heron, I have only heard of the Yellow Card, that Met mentions and has kindly given the link.

1 like
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HeronNS
HeronNS
in reply to Kaarina

I was remembering from the deleted thread that Bupi had said s/he didn't know if a report could be made, so this isn't really for me. Just trying to get the info for Bupi.

1 like
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Kaarina
Kaarina
in reply to HeronNS

Yes, I appreciated that the information was for Bupi. :)

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KidneyCoach

I took one injection of Prolia and had horrid side effects. I refuse to take anything else for my severe bone loss. The risks are worse than the benefits. I have been on dialysis for over 16 years, multiple fractures, bone loss, hair loss etc. Most (like 99.9%) have no idea what the consequences of taking a medication will do or impact someone like me without any kidneys (removed). There have been virtually no research or studies of this drug on people with my medical problems. I am unwilling to take such chances. Gynecologists, endocrinologists, GP's, cardiologists, even nephrologists do not have enough information at their disposal to accurately advise me personally on the use of most medications. IMHO. Blessings

3 likes
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Bupi
Bupi
in reply to KidneyCoach

Priolia seems to have rocked ALOT of boats and a lot of unnecessary pain!!

HeronNS has given some great insights ( see previous threads ) You might just find helpful

Yes agree sometimes risks are worse than benefits

Can only hope things get better for you x

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sweetsusie

I won't take those horrible bone drugs and believe they should all be taken off the market. We are being treated like guinea pigs here. I take HRT (hormone replacement therapy) for my osteoporosis. You should never have been prescribed those horrible drugs for osteopenia...even if bad! Go on HRT and don't worry.

2 likes
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Bupi
Bupi
in reply to sweetsusie

My new doctor agrees with you

And has now prescribed me with HRT ( Livial )

Which I will look into

But Priolia NEVER again !!!

🤗

2 likes
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sweetsusie
sweetsusie
in reply to Bupi

So happy to hear this, Bupi!!!! Gads! So relieved for you!! I only hope more doctors will get a clue as to what these bone meds do and the HRT is the way to go!!! Good luck..keep me posted! YIPPEE!!

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siennasea

I'm so sorry to hear about the pain you have suffered as a result of the toxic Prolia.

It's shameful that consultants bully sufferers of Osteoporosis into taking this poison which remains in the system for up to a year.

Dr. Khan a consultant in the Osteo clinic of University College Hospital London tried to persuade bully me even into taking this toxic drug. I recall being in the supermarket and being called by him insisting I keep my appointment to have the Prolia injection.

The aggressive African nurse - Ada, a renowned bully also kept calling me ordering me to come to the clinic to have the Prolia injection she would administer it. Over my dead body I told her. This is the same nurse who is known to bully patients when she is on ward duty, refusing to give one Osteo patient a drink of water in the middle of the night.

I was fortunate to have looked up Prolia online and read the history of Amgen the very corrupt $Billion Pharma company who was sued in the USA for $5 multiple millions for making false marketing claims. Amgen is a very corrupt company they offer 'incentives' to consultants and also to drug procurement executives at hospitals. They also fund 'research' projects at all University College hospitals across the UK.

The side effects of Prolia are lock jaw and brittle bone disease. Why would I risk making my condition a lot worse by taking that toxic drug.?

I manage my Osteoporosis by eating healthily, taking vitamins and doing weight bearing exercise.

Good luck to all. I hope your condition improves. It has been known to by sticking to a healthy diet and lifestyle.

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