Five years on Prolia Zero side effects plus st... - Bone Health

Bone Health

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Five years on Prolia Zero side effects plus started two more years additional.

Makeshift profile image
10 Replies

At 5 years on taking Prolia (for osteopenia and broken wrist). ZERO side effects ; I recently had my two year intervals deca scan with results : AP Spine T Score .5, left hip total T score -1.2, Left hip Femoral Neck T Score -2.1, Right hip total Z score -1.3, Right Hip Femoral Neck T score -2.3. Probability Osteoporotic Fracture 37%, hip fracture 13.8%. Previous 2 year earlier Dexa scan was very similar with Major Osteoporotic Fracture 39.2%, Hip Fracture 11.0%.I took Dexa scans prior to starting Prolia one in 2012 Ins 2010 from a different machine with results much worse (just under the osteoporosis diagnosis) have been told you can’t compare to more recent since different machines. My doctor suggests since stable to keep on Prolia for the next two years. I noticed a post of someone getting ringing in ears after Starting Prolia. I do have ringing but do not know when it started so cannot state it’s related. I am very active 68 year old male playing pickle ball and bike riding . Pain in L4,L5,S1 in past 6 months diagnosed degenerative disc with almost all the disc gone in L4 and L5. Minimized with P/T. Reduction in height of 1.2 inches in 6 years. Just sharing my results while taking Prolia. I am scared to think what will happen when removed for what ever reason in the future. My doctor did not seem at all concerned of any rebound spine fractures when I showed her the high lighted warning listed by Prolia document. She seemed to think close observation was enough. Stated it hasn’t happened in her practice. That’s scary! For what it’s worth I was told at the beginning I would be on it for jus 2 years and was led to believe that’s all it was needed. If I knew then what I know now I would NEVER have started on it.

10 Replies
Met00 profile image
Met00

That's good that you've seen an improvement in bone density, but you need to insist that you're put on an alternative medication when you stop prolia in order to reduce the risk of rebound fractures. It's now well-documented that this is necessary and your doctor is being negligent if he says it isn't necessary on the basis of experience with his patients only!

Kaarina profile image
Kaarina

This information has been lifted from this link: theros.org.uk/information-a...

I appreciate you are in the US but nevertheless your doctor should be aware of this information. Do not let him fob you off with false information.

How long to take it

Denosumab/Prolia is generally prescribed long term, so you need to be happy it is the right option for you.

To get the full benefits, denosumab should be taken regularly as instructed by your doctor or pharmacist.

There’s no formal guidance on how long you should continue to take denosumab. In some cases it can be prescribed for a decade or even longer. It’s a good idea for you to review your treatment with your doctor, every so often, to check it’s still the best option for you.

Ending your treatment

When you come to the end of your treatment, you should start taking another osteoporosis treatment straight away.

This is because stopping denosumab causes a sudden drop in bone density and increases your risk of spinal fractures. Following denosumab with another osteoporosis treatment has been found to stop this from happening. Spinal fractures caused by this sudden drop in bone density are called rebound fractures.

In rare cases, you might be advised to stop taking denosumab without a follow-on treatment. This happens if your risk of breaking a bone is very low, and the decision should always made by an osteoporosis specialist.

Makeshift profile image
Makeshift in reply to Kaarina

Thank you for sharing. I agree

nellie237 profile image
nellie237 in reply to Makeshift

And thank you for sharing too

Arcadia10 profile image
Arcadia10

My T-scores are far worse than yours, even after 2 years on Prolia, and yet my probability for an osteoporotic fracture is far less (5-year predicted risk is 17% as reported on my last DEXA). So something is wrong somewhere if you have a higher fracture risk reported. Have you done the FRAX test? sheffield.ac.uk/FRAX/tool.a... That will enable you to double check your fracture risk.

AnnieW55 profile image
AnnieW55 in reply to Arcadia10

Fracture %ages change, become greater with age and increase until about age 85 when it begins to decrease as the likelihood is that the patient will have other problems or, cheery thought, be deceased. So it depends on how old you and Makeshift are.

Arcadia10 profile image
Arcadia10 in reply to AnnieW55

I'm 66.

LucyJ1961 profile image
LucyJ1961

I was an active 55 year female. Started breaking bones around 50 and was put on Prolia. After 5 years I missed a shot. Another 5 months went by and then I tripped while hiking and fractured 4 vertebrae. They literally crumpled. My doctor had never discussed the necessity of vigilance on receiving every shot. I sought out medical help elsewhere and it was confirmed through a Rheumatologist that rebound fractures of the vertebrae are well documented.

Makeshift profile image
Makeshift in reply to LucyJ1961

Sorry for your terrible experience. I believe there is reason for us to be aware of these incidents so we can be better informed. The doctors though are the ones needing to be informed since they control or not if we get the drug, for how long, and how we are taken off it. Doctors in general seem to not listen to us and cast off our input from blogs. They do take notice of medical documents stating your point. Thanks for your sharing

Hi! I have been on Prolia for 3 years now with 0 side effects. Just sayin.

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