Dear Online community,I'm after more thoughts on treatment for osteoporosis.I was diagnosed with early stage breast cancer July 2017. My type is oestrogen receptor positive. So, I was put on Letrozole straight away, had a lumpectomy, chemo & radiotherapy. Last mammogram clear, so all good. However, I now have osteoporosis. I'm taking calcium & vitamin D, but my oncologist is looking into 6 monthly injections of Prolia (Denosumab) to reduce the risk of fractures (particularly in the hip).I've looked at the possible side effects & some look awful!!! Anyone experienced these injections & any related side effects?Cheers,Sue

I am also on Letrozole and also have bad osteoporosis. I've been on Prolia injections for the last 18 months (3 injections so far). I've had none of the side effects listed in the warnings. The only thing was that my GP didn't want me to have both the flu shot as well as the Prolia at the same time...said he wanted at least a week between the two.

Hi @AdriI’m still on Prolia injections 3 years later and all is still well.Prolia only stays in your system 6 months so I time my dental trips between end of one and beginning of next injection.It does leave your system quickly howeverso important to be vigilant ie no time gaps.Its most important your dentist knows you are on Prolia - my 6 monthly checkups are basically to clean and fluoride treatments.Make sure you have a thorough dental examination and all dental work up to date before starting a Prolia.Prolia is a problem for treatments like root canals and extractions , I believe simple fillings are fine but please check with your dentist.Its my understanding once you start Prolia it is a treatment for life.You would have been recommended it as you are already osteoporotic and hormone therapy worsens bone density significantly without it.My Prolia injection is always in my tummy and it’s painless - nurses are excellent administering needles imo.

Ho @Adri I have been having the Prolia injections now for 2 years and just had my bone density scan and my results have improved over that time. I always have the injection in the stomach and apart from the light sting of the needle itself it’s not painful at all, for a few days after I feel a bit achey but certainly no serious side effect at all. As @Romla said above you do have to have every 6 months and it’s for life. My GP told me if I go off it my bone density will decrease far quicker than normal. Thanks Romla for the dental info, I have never been told any of that.

Adri said: Hi Everyone I have this same question as Suef did back in 2018. I was told yesterday I would need the Prolia injections or could go to hospital and get it via a drip. I didn't like the sound of the side effects especially the one Dr said could dissolve my jaw! Anyway reading this makes me feel much better about going ahead with the treatment.a couple of questions.Can you come off this after hormone therapy (Anastrozole) is finished and is the injection easy to have and where is the best place to get it.Hope someone can get back to me. xx I have had Zometa which is given to me by IV drip for the last 3 years I have osteoporosis in my spine but the Zometa has stabilised my bone density so it doesn't get worse. I'm not having it for life, in fact I've just switched to Tamoxifen so my bones don't worsen I only felt like I had the flu first time, it definitely wasn't pleasant but next rounds I felt nothing!

Hi @"Sue F" I have had osteoporosis for 8 years or more .I started Prolia injections AUgust 2017.I too was terrified when told I needed the injections brecause of what I had read online.I asked my GP who told me hasmany patients on the injection and no problems. I asked a friends who has been on it 4 years and has had no problems.When I started talking about Prolia I was surprised how many told me they were taking it and with no issues at all. So I start3d too and no issues thus far.I also learnt that it reduces breast cancer risk further in conjunction with Letrozole and in NY they give it to women who are not osteoporotic for that reason.Was put on bisphosphonate tablets 6 years ago but after 2 fleeting attempts of approx 3 months each I gave them away.First attempt caused an ulcer as need to be upright for 30 minutes or more after ingesting .Following year tried again but needed tooth extraction and could not get a dentist to help as is risk of osteonecrosis of jaw with extrications/ root canals etc.Eventually found the chair of dentistry here agreed to do it but only after crosslaps blood test revealed bone still turning over.Bisphosphonates stay in the system for many years after you cease them I would exercise real caution before considering that option.Big plus of Prolia is it only stays in the system 6 months not indefinitely like bisphosphonates.I use the time between injections for dental work.Do have a full dental check and all work done before embarking on either option and make sure your dentist knows that you are using either option.Good dental care is critical.Just before breast cancer diagnosis in 2017 I cracked a rib getting out of a collapsing QS air bed .This turned out to be fortuitous as at 64 and osteoporotic it meant Prolia injections were at the PBS price of approx $38 not $275.To qualify for the PBS price you must be osteoporotic Plus either be over 70 OR have had an osteoporotic fracture.I have a friend 79 taking it for arthritis she pays $275 as Not osteoporotic.In short I recommend Prolia and have had no issues whatsoever.Be careful with Calcium tablets - is a lot of concern from cardiologists about them.Osteoporosis Australia new clinical guidelines released in November do not recommend them any more.Make sure you get plenty of vitamin d and weight bearing exercise.In fact weight training appears to be able to reverse bone loss. @Deanne has had great success thru the Bone Clinic run thu one of the Qld Universities.

Prolia (Denosumab) Injections for osteoporosis

melclarity
Member
2 years ago
@Pommy8 I hear you, unfortunately since I had both treatments 2011 and 2015, it snowballs one thing into another. Sadly, treatment causes alot of problems post :/ I'm drug sensitive so I react terribly to just about anything outside of panadol/nurofen. That has made it super hard these past 11 years. Just do what you feel you want to do for you. It does bring up the issues around survivorship and how unaddressed it all is. Hugs M x
Pommy8
Member
2 years ago
Nice to hear the positive cost is not an issue it's putting more stuff into me that's got alot of side effects.
melclarity
Member
2 years ago
@Pommy8 I was oesteoporotic after chemo end of 2015 and was placed on Prolia injections, I just finished my last one this year, that's 8 years, twice a year :) THE BEST thing I ever did, I was 47 at the time. My dexascans have been fantastic, it absolutely worked for me. This phase however will be tricky, once you come off you are vulnerable. So another Dexa in April and hoping it is still good.

I wouldn't be scared of it at all, also my extras cover helped alot with the cost. NIB paid 65% as its about $295 I think each.

I'd been on AI's for like 11 years and tossed them last year, Oncologist was fine as i'd had more than enough. M x
Pommy8
Member
2 years ago
I'm so scared and deciding if I should start prolia tablets didn't work for me I thought I was doing great but it started to effect my oesophagus.
That's the issue these medications leads to another underlying problem.
I'm osteopina stage in spine n neck is it work refusing for 6 months and doing weight baring.
I'm also on letrazole which I'm doing ok.

I stopped my tablets 3 weeks ago concerned as now having twitching in my fingers .
I'm 59 some say young to start prolia and for life what happens if it dosnt agree with you?
Sorry scared yet again.
Adri
Member
6 years ago
hey sorry Romia and JulieVTII did'nt scroll far enough thank you for your advice take care
Adri
Member
6 years ago
Thank you both making me feel much better about it. I now just have to wait until things settle down due to this awful coronavirus before I see my Dentist.
Take care over the next few months
❤️❤️
melclarity
Member
6 years ago
@Adri hello!! I have been having Prolia injections going into my 4th year now, it is scary reading the side effects. However, I have not experienced any problems whatsoever. In fact I had a Dentist visit only 4 weeks ago and required a filling, this was a new Dentist as I had moved residence. He took xrays and checked everything and said my teeth were in excellent condition! go figure?

I am no longer osteoporotic but my Oncologist decided to extend me another year, I am due for a dexa mid year but we shall see if that happens or is postponed.

I receive my injection in the upper arm as I have had a Diep Flap reconstruction and so the Doctors are unable to do it there, though they all have a look and then go aaaah! lol It is a slight sting, not a big deal to be honest and it depends, I too sometimes could be a little achey a few days later, nothing that panadol osteo can't help with.

Cheers

M x
Katy_Sodapop
Member
6 years ago

Adri said:

Hi Everyone I have this same question as Suef did back in 2018. I was told yesterday I would need the Prolia injections or could go to hospital and get it via a drip. I didn't like the sound of the side effects especially the one Dr said could dissolve my jaw!
Anyway reading this makes me feel much better about going ahead with the treatment.a couple of questions.
Can you come off this after hormone therapy (Anastrozole) is finished and is the injection easy to have and where is the best place to get it.
Hope someone can get back to me. xx

I have had Zometa which is given to me by IV drip for the last 3 years
I have osteoporosis in my spine but the Zometa has stabilised my bone density so it doesn't get worse. I'm not having it for life, in fact I've just switched to Tamoxifen so my bones don't worsen
I only felt like I had the flu first time, it definitely wasn't pleasant but next rounds I felt nothing!
JulieVT11
Member
6 years ago
Ho @Adri I have been having the Prolia injections now for 2 years and just had my bone density scan and my results have improved over that time. I always have the injection in the stomach and apart from the light sting of the needle itself it’s not painful at all, for a few days after I feel a bit achey but certainly no serious side effect at all. As @Romla said above you do have to have every 6 months and it’s for life. My GP told me if I go off it my bone density will decrease far quicker than normal. Thanks Romla for the dental info, I have never been told any of that.
Romla
Member
6 years ago
Hi @Adri

I’m still on Prolia injections 3 years later and all is still well.

Prolia only stays in your system 6 months so I time my dental trips between end of one and beginning of next injection.It does leave your system quickly howeverso important to be vigilant ie no time gaps.

Its most important your dentist knows you are on Prolia - my 6 monthly checkups are basically to clean and fluoride treatments.Make sure you have a thorough dental examination and all dental work up to date before starting a Prolia.Prolia is a problem for treatments like root canals and extractions , I believe simple fillings are fine but please check with your dentist.

Its my understanding once you start Prolia it is a treatment for life.You would have been recommended it as you are already osteoporotic and hormone therapy worsens bone density significantly without it.

My Prolia injection is always in my tummy and it’s painless - nurses are excellent administering needles imo.