I am from Australia and am new to this site.

[AussieP]

I had surgery for Breast Cancer in 2014 followed by Chemo, Radiation and 8 years of estrogen blockers. I recently saw my oncologist after a DEXA scan and she told me I had Osteoporosis and should go on Prolia which was arranged with my GP. I was only told that most people only got mild side effects so after my dental checkup and had the Prolia injection on 10th November 2021. After about a month on Prolia I started having side effects, including extreme constipation, fatigue, loss of strength, fogginess and lack of balance and other side effects. I had lots of tests and was told there was nothing wrong with me and continually told it was not the Prolia. At the time the doctors were only having telephone consultations because of Covid. I decided I would not have the second injection. My question is has anybody stopped after the first Prolia shot without severe side effects.

[Arcadia10]

I'm in Perth, WA. Welcome to the site! You'll find a lot of information here and meet loads of very helpful people. It's been a lifesaver for me.

I took Prolia for 2 years (4 shots) and have since discontinued it due to the intolerable side effects which you too experienced. I also got the run-around from my doctors and specialists saying that none of their patients had side effects from Prolia. I'm sure several people will jump in to this conversation with their own personal experiences but, from what I understand from my reading here and researching the medical literature, you should be fine to stop Prolia after only one shot. More than one and you have to take a relay bisphosphonate for at least 24 months which is what I'm doing.

[AussieP in reply to Arcadia10]

Thank you Arcadia10 I thought that might be the case. I can relax now.

[Arcadia10 in reply to AussieP]

You might like to read this definitive guide on stopping denosumab (Prolia) by an eminent Swiss professor: researchgate.net/publicatio... In the summary, it says "After the second denosumab dose, there is a rebound effect with an increased risk of multiple vertebral fractures." The implication is that there is no rebound after the first injection.

[AussieP in reply to Arcadia10]

Thanks Arcadia read the article so I will take my changes. Interesting that it is the second line treatment. I think now in Australia it is the first line of treatment. I was not offered anything else just the Prolia. I was put on the Prolia as letrozole which I took for 4 years after 4 years on Tamoxifen thinned my bones. I have read other articles where it was OK after the 1st dose but not after the second. Hope you are doing OK.

[Arcadia10 in reply to AussieP]

Yes, I agree - Prolia is too readily prescribed here through lack of knowledge on the part of the prescribing doctor, but I'd imagine that's probably the case in other countries too. Unfortunately a lot of medical professionals don't appear to keep up to date with the current medical literature. I have been quite shocked by the level of ignorance about Prolia and its side effects amongst the doctors I have consulted over the past few years. When I asked my then-endocrinologist why she had prescribed it for me when the medical literature was publicising the problem of rebound fractures, she said "we knew about the issue, but didn't accept it". Well, bad luck for me! A GP I saw last year when my regular GP was unavailable and I was certain that I'd had a rebound fracture (which an MRI showed I had) said "I didn't know this could happen". A friend of mine was recently advised by her GP to start Prolia even though her last two DEXA scans showed her as only being osteopenic. She asked my advice and I told her to find a new GP! This is all very concerning. I hope medical professionals get up to speed soon because their patients are suffering the consequences of their ignorance around this drug.

Accepted practice these days is to prescribe Prolia for patients with severe osteoporosis who have not been able to tolerate or had success with other treatments like bisphosphonates first, so it's a drug of last resort. I think this is mainly because of the potential for rebound fractures when discontinuing it if that becomes necessary. The problem is that if you have side effects from Prolia, as you and I did, and you don't know whether you can tolerate a bisphosphonate, then stopping Prolia becomes hugely problematical. I was not offered any other medication by the endocrinologist either when I was put onto Prolia in 2018. I then struggled with the bisphosphonates when I had to stop Prolia and still have some minor side effects, but knew that I had to keep going for 24 months at least. Despite being on a relay bisphosphonate (Actonel), I still had rebound fractures because I didn't take the most efficacious drug (Fosamax or Reclast) and started weaning off Actonel too early. No-one really knew what to do to get me off Prolia safely. It was largely guesswork on their part.

Yes, I'm hopefully getting to the end of this bumpy road, thanks. I hope you're well too after what sounds like a very difficult journey for the past eight years.

[TommyJohn in reply to Arcadia10]

I’m on my 7 or 8th year of Prolia, prior to this I had 2 years of Forsteo. When I reach 10 yrs of Prolia, I have the options of an annual diffusion for 5 years or a further 2 years of Forsteo. These choices are available if you go to a specialist, usually a rheumatologist or the osteo dep’t in your local hospital- not your GP -

Of course the other options are compression fractures and listening to the advice of internet ‘specialists’.

Your choice ehh a bit of discomfort or fractures !

[Sunseaandsand]

Hello AussiePI had one injection of Prolia in February 2019.

My side effects lasted a couple of months beyond the six months.

My consultant told me that if I had been having the second injection I would have been ok up until the November to have it.

This would have left nine months between injections.

Because of severe side effects I declined.

In May 2020 I had a spinal fracture followed by another in the July.

I had an in depth phone consultation and questioned if it was possible that stopping the Prolia after one injection could have been responsible for the fractures.

I was given the answer that it was unlikely but could not be ruled out owing to that each individual can have different responses, he ended the conversation saying by saying there is only one of me. (Meaning I )

I do think that if the bone density is severely low as mine is then fracturing after one injection is possible

I would like to add that over the years I have had many of the treatments with drug holidays in between.

Because of bad side effects from Forsteo I took a drug holiday against the advice of the consultant and I not only lost what I had gained from the treatment but also more as well.

My conclusion from 19 years of living with osteoporosis is these treatments can and do work for many people and if one can tolerate them the secret to maintain d building bone is to continue with them.

If I was fortunate to have found such a treatment then I would welcome it.

I have now 10 spinal fractures 3 of which have occurred since January this year.

I thought things could not get any worse than they were but since January I have been in another lock down.

In fact each time these fractures occur I am completely house bound and even being moved in my wheelchair by another person cause’s crucifying pain.

My message is try the treatments and if they are well tolerated then stick with them.

If not then try a different type of treatment in the hope that you find one that suits you.

We really do have to look after our health in the best way possible.

Do everything you can to prevent this horrible disease from progressing.

[AussieP in reply to Sunseaandsand]

Hi Sunseaandsand Thank you You have had a difficult journey. I have been off the Prolia for a week now. I am still a bit fuzzy in the head and I am going to the dentist today. I have a sensitive tooth so hope I can have it fixed. Don't know if is because of the Prolia. I don't really want to go onto any other medication but will see how it goes.

The lockdowns are not good for the mind or body. I hope you will be able to get out soon.

[Exbury1905]

Hi Aussie P,

You made the right decision! I too had one injection and developed some of the side effects you mentioned. I also had a bony growth on my upper gum. When I asked my dentist about it he asked if I was on Prolia...and when I told him I was he advised not taking any more so I just had the one injection and since then have been taking the vitamins and minerals as recommended by people on this site. I have had NO side effects. Good luck.

[AussieP in reply to Exbury1905]

Thank you for your response. I have only been off Prolia a week and still have some fuzziness and I too have to see my dentist. I have a sensitive tooth but it may not have been from the Prolia. It is good to hear that you have no side effects.

[Exbury1905 in reply to AussieP]

You are welcome. I hope your tooth problem is not Prolia related. Be sure to tell your dentist that you have taken Prolia.