I plan on stopping prolia after one i... - Bone Health and O...

Bone Health and Osteoporosis UK

5,552 members2,416 posts

I plan on stopping prolia after one injection, my appt for the next is later this month. Should I contact my dr.now, or just tell her then.

Pronomoe profile image
24 Replies

Should I contact my dr about stopping prolia ahead of my appointment

Written by
Pronomoe profile image
Pronomoe
To view profiles and participate in discussions please or .
Read more about...
24 Replies
Jennymary profile image
Jennymary

If you're only going for your injection, why don't you ring the practice, leave a message for the Dr and let them decide whether to cancel the appt or not, otherwise you could find yourself wasting your time and theirs, good luck

Pronomoe profile image
Pronomoe in reply to Jennymary

Thank you. You are right.

Fracturegirl profile image
Fracturegirl in reply to Jennymary

You probably are going to have rebound fractures beginning around 8-12 weeks after the missed shot unless you have previously taken something like Phosamax.

Pronomoe profile image
Pronomoe in reply to Fracturegirl

From what I understand, the longer I use it the worst the chances increase of becoming worse

Seacrab profile image
Seacrab in reply to Pronomoe

That is my understanding as well. I have contacted my doctor AND been into his office. My shot is due now; no response from him. I feel like a sitting duck.

Pronomoe profile image
Pronomoe in reply to Seacrab

seacrab, it's been a while now since my only injection. My followup was with the nurse. She was totally understanding, but my last visit was with my dr., and she was not happy with my decision. But that IS mine to make. I'm not that hard to get along with normally but the only info I got was what i researched and that was enough to make me take my chances.

I don't want on any of these products.

even my gp nurse agreed with me.

monkeygame profile image
monkeygame in reply to Fracturegirl

if i have only had 1 nedil will that worry me if in stop

sweetsusie profile image
sweetsusie

Yes..let them know you're not coming in..and good for you for making the decision to NOT take these bone meds...I believe they should all be taken off the market.

Birdmama profile image
Birdmama

By all means please notify your doctor. I hate Prolia but you need a backup plan. I delayed for a few weeks and experienced 6 compression fractures of the thoracic and lumbar vertebrae. This has resulted in greatly reduced mobility so please proceed with caution!

in reply to Birdmama

Same for me just underwent verteoplasty L5 and sacroplasty, both as the result of Prolia discontinuation,

be very sure to have a alternative treatment ready.

Pronomoe profile image
Pronomoe in reply to Birdmama

Thank u. I am increasing my exercise. But don't want on ANY type of " bone enhancement " anymore. I'm sorry, I don't mean to be short, but am so aggravated that I fell into this web of deceit and lack of informations!

Meepoo profile image
Meepoo in reply to Pronomoe

Wishing you the best. I stopped Prolia after 3 injections. Started Fosamax weekly last month. My original T score was not that bad at -2.6 but my gynecologist put the pressure on me to start Prolia and I caved in.

My plan is to stop Fosamax soon. I have an appointment in November with my Primary doc as i fired my gynecologist.

I started taking K2 6 months ago. You should look into it.

What were your original T scores?

There is a Prolia Facebook group and someone said their doctor told them that the vertebrae fractures are more common with people who have more severe osteoporosis. I don't know if that is true. I can't find any research on this.

Allie2013 profile image
Allie2013 in reply to Meepoo

What your doctor says is not true. I started Prolia in 2013 when I was 53, active, and had never had a fracture. My Lumbar Spine T-score was -2.4. My doctor stopped it in 2017 when my score was -2.0 without putting me on anything else. Now I have 10 vertebral fractures with disabling pain.

DebDenise profile image
DebDenise in reply to Pronomoe

I stopped taking Prolia because of a femur fracture after my second injection. The osteoporosis clinic did not put me on any bisphosphanates coming off it as they were also concerned if Actonel which I was on for several years played a role in the fracture as well. I fear the rebound fractures & I pray often that I will be ok. I should have had an injection December 1st 2018.

I am trying to control my osteoporosis with nutrition & exercise now.

I had me surgery for the intramedullary rod 12 weeks ago today & heading back to work tomorrow.

I am still upset that I was convinced to go on Prolia. We trust that our doctors know what is best for us.

Seacrab profile image
Seacrab in reply to Birdmama

How are you making out?

Kaarina profile image
Kaarina

Hi Pronomoe,

I tend to agree with Birdmama. See your doctor. As I understand it you have had one injection and will not be having the second injection at the end of this month. Be mindful that rebound vertebral fractures can occur if you stop taking Prolia and do not continue with another OP drug.

I do not know if this may happen as you have had only one injection but worth trying to find out if at all possible.

Pronomoe profile image
Pronomoe in reply to Kaarina

I have done a lot of research, unfortunately, after the 1st injection. I have been pursurated of this for yrs. when I finally gave in, I was given no info or warnings. I asked a few questions but was schrugged off and followed my dr's suggestions.

Kaarina profile image
Kaarina in reply to Pronomoe

It sucks doesn't it? I had a lucky escape. Prolia was recommended to me after strontium ranelate was withdrawn and I was gutted. (I asked to be put on SR). I refused to take Prolia because of possible side effecs of joint pain as I suffer with this daily due to osteoarthritis. My doctor agreed with my decision and then told me about the rebound vertebral fractures on stopping this drug. Phew. So relieved I never took this drug from what I now hear from others.

diana9 profile image
diana9

I too am not going to have a second prolia injection. I put off having the prolia for couple of years as read all the side effects etc. After breaking my hip last year my gp kept at me to take prolia or risk ending up in wheelchair. I finally gave in and had the injection in May this year. But I had bone muscle pain,fatigue,chest pain and came out in itchy red rash all over. Felt like I had been hit by truck. Dr said I have lupus as well. After several months of test he has told me not to have the next injection as he thinks it's a reaction to prolia. I am worried about rebound fractures now but Dr claims to not know anything about it. So now I am just taking vitamins and trying to exercise and hope I don't break anymore bones. Last two years I fractured my femur, ribs, spine, fingers and hip. Very frustrating that Dr just prescribed without giving any information and just dismissed any of my concerns telling me not to google.

Pronomoe profile image
Pronomoe in reply to diana9

Sorry about your situation. What is so bad is that the dr's should be more informed and the tell their patients of all the reasons for concern.who can we put our trust in if not our drs!?

Kaarina profile image
Kaarina in reply to diana9

Hi diana, I think your doctor should do some research instead of being so dismissive and telling you not to google! Very frustrating indeed!

ncbi.nlm.nih.gov/pubmed/293...

Greenie1 profile image
Greenie1

Hi Have you gone off Prolia. If so what have you done. I was rail-roaded into Prolia while I was in shock over my diagnosis. No blood tests or anything! I hate in and am only 2 weeks in. So much hip pain and feel I am so tired all the time. I need help to get out of this and find a specialist who can help me.

Allie2013 profile image
Allie2013 in reply to Greenie1

I started Prolia in 2013 when I was 53, active, and had never had a fracture. My Lumbar Spine T-score was -2.4. My doctor stopped it in 2017 when my score was -2.0 without putting me on anything else. Now I have 10 vertebral fractures with disabling pain.

Seacrab profile image
Seacrab in reply to Greenie1

I blindly accepted Prolix injections from my trusted physician 4 years ago, I didn't realize my side affects were related to Prolia until I did my own research. I cannot find an informed physician. Am due for my next injection. Scared.

You may also like...

Stopping Prolia after one injection?

How risky is it to stop Prolia after one injection, concerning the \\"rebound\\" effect? In a...

Drugs: After 3 Injections of Prolia (1.5 years later), I have finally put 2 + 2 together! With a previous healthy life-style (I am 71, male

After 3 Injections of \\"Prolia\\" (1.5 years later), I have finally put 2 + 2 together! With a...

Compression fracture - old or new?

Causes of Osteoporosis

osteoporosis advice please.