My oncologist is recommending Prolia for my osteoporosis. I have taken Femara for 6 years and this has significantly reduced my bone density. I was swapped a year ago to Tamoxifen, and my bone density is still dropping. My T-score is now -2.4. I am almost at the osteoporotic level of -2.5. My oncologist recommends this 6 monthly injection, and says it is the best in his opinion for osteoporosis treatment. He said side effects were minimal or none at all. I did a google search of this drug and was surprised by all the negative reviews. Any advice good or bad would be greatly appreciated please. Does anyone have the yearly infusion or take the tablets instead of the Prolia injection?Chris xx

Hi @Chris My bone density plummeted in the first year of taking Femara (I had 2 years on Tamoxifen before having ovaries removed and changing to Femara). After the first year on Femara my t-score at the spine was -3.2! My breast surgeon recommended Prolia but I had reservations. I asked lots of questions and still had concerns.I stumbled across the Bone Clinic. They address all the issues that contribute to bone health. Their dietician examines your diet to ensure that you are getting enough calcium and all the other vitamins and minerals that are needed for healthy bones. I also saw their exercise physiologist who checked my functional movement and made sure it was safe for me to commence their weightlifting program. There has been a lot of research into this program through the Griffith Uni.After 12 months on their program my t-score had improved to -2.1 at the spine. No Prolia or any bone medication and still taking Femara. I am just about to have my next bone density scan. I am hoping that it will show another positive result.@Romla is right, even the makers of Prolia advise that your risk of fracture actually rises if you stop Prolia. At only 50 when diagnosed with osteoporosis I did not want to start on Prolia unless absolutely necessary. For me a supervised weightlifting program and some minor adjustments to my diet have reversed my diagnosis for now. Ask lots of questions until you are comfortable with your choices.

Thanks Romla and Deanne for your answers. I am very interested in the information from the Bone Clinic. I think I am doing the right things, but maybe I am not. I was surprised to read the othe day that milk taken with weetbix doesnt get absorbed. Who would have thought! I asked my oncologist about this yesterday, but he didn't seem to think it was an issue. Maybe it is, and maybe the bone clinic is where I should start.Thanks Romla for shedding some light on Prolia. Probably the reviews are written by those unhappy with the drug. Those with no side effects probably aren't thinking of reviews.

@Chris I also take 2 Caltrate Bone and Muscle Health daily which provides the recommended calcium and vitamin d3 as per Osteoporosis Australia for my circumstances -1 morning 1 night.I do light weights twice weekly and walk daily for one hour which I hope helps my osteoporosis.I try to eat high calcium foods but tend to avoid the sun as am very fair so my vitamin d from it is low.

Update. I took on board a comment regarding heart issues with calcium . Up until the new guidelines above I believed the addition of vitamin d3 counterbalanced this issue. It would appear there is now new narrower guidelines for the use of Calcium/ vitamin D because of heart/stroke concerns which I will be taking up with my specialists. I was put on Caltrate some years ago when prescribed bisphoshonates for osteoporosis- the latter I no longer take and the former may need a rethink.

Osteoporosis and treatments | BCNA Online Network

adean
Member
7 years ago
I had twrrible side effects of chronic bone pain for weeks post prolia .ended up having a surgery to my knee as we are unsure if the prolia changing the bone structure was the cause or co incidental.although lm a problem because l have prv which is a blood cancer and my onco wasnt sure what to expect. Ive been given the option to go to a osteo specialist when my recovery is complete.as should l have prolia again?
Chris
Member
7 years ago
Thanks Romla for the link to the osteoporosis paper. I am reading it with interest.
Thanks too Deanne for the info on the Bone clinic. I cant yet find anything similar here in Sydney. We have fracture clinics, but they sound different to what the bone clinic offers. I wouldn't qualify to even visit a fracture clinic yet even though I'm border line osteoporotic. I need to be over 70 or have had a fracture recently.
Chris
Member
7 years ago
Thanks Michelle. Your new results are really good. My T-score for my back is already -2.4. My hips are -1.6, and -1.8. I probably should be on something now, but first wanted to see what others are doing. My diet has calcium in it plus I take a supplement of calcium and vitamin D. I also do weights and strength training at the gym with a personal trainer twice a week and walk my dog daily. Maybe without those things my results could be worse.
Michelle_R
Member
7 years ago
Hello @Chris, I had Prolia injections - 9 in all - since 2013 with no side effects. My Hip T-score improved from -1.6 to 0.96, and spine T-score from -1.66 to 0.32, so it definitely improved my density by slowing down bone turnover. During this time I regularly used the treadmill @ 6 for 30 mins/day and used light handweights. A year ago I stopped, but my bone density has stayed the same since. I think like all our meds, the results are individual. The Bone Clinic is excellent but too far for me. All the best with your decision. Michelle x
Romla
Member
7 years ago
@kmakm I learnt the hard way about allowing others unquestioned control of my health a few years ago . The internet is a wonderful tool if you’ve got the time and cause to look - I have both but sometimes miss things so an occasional tip helps.
kmakm
Member
7 years ago
@Romla You inspire me with how you stay across all your treatments and advocate for yourself. Damn impressive.
Romla
Member
7 years ago
Update. I took on board a comment regarding heart issues with calcium . Up until the new guidelines above I believed the addition of vitamin d3 counterbalanced this issue. It would appear there is now new narrower guidelines for the use of Calcium/ vitamin D because of heart/stroke concerns which I will be taking up with my specialists. I was put on Caltrate some years ago when prescribed bisphoshonates for osteoporosis- the latter I no longer take and the former may need a rethink.
Romla
Member
7 years ago
Here are the new Australian Osteoporosis guidelines . Towards the end is a lengthy discussion about Aromatase Inhibitors and osteoporosis.

https://www.racgp.org.au/download/Documents/Guidelines/Musculoskeletal/osteoporosis-guidelines.pdf
Romla
Member
7 years ago
@Chris I also take 2 Caltrate Bone and Muscle Health daily which provides the recommended calcium and vitamin d3 as per Osteoporosis Australia for my circumstances -1 morning 1 night.I do light weights twice weekly and walk daily for one hour which I hope helps my osteoporosis.I try to eat high calcium foods but tend to avoid the sun as am very fair so my vitamin d from it is low.
Romla
Member
7 years ago
Here is an article about Prolia reducing breast cancer recurrence

http://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some