Broken bones from Aromatase Inhibitors and joint replacements
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whatjusthappened - I was warned that it can take a minimum of four Prolia injections to start seeing any reversal of bone loss, so you may still have some gain going forward if you stay on Prolia. I have fared very well since stopping Prolia, which was a cold turkey stop. I have maintained my density gain as per my last DEXA, but am due for a DEXA now, so we will soon see how things are looking another two years later. I see my MO in about six weeks and he orders my DEXA scans, but I may ask for that ahead of time so he can review the results at the appt. I have read that it is now advisable to have at least one infusion of Reclast after stopping Prolia but I needed a jaw/dental surgery (unrelated to Prolia - it was not ONJ) so I needed to be off everything immediately, so didn't have the Reclast.
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Special - please do post what your new DEXA scan discloses. After my scan in January, my endocrinologist determined I will continue for Prolia for now - shot # 11 coming up. He also said that although there were trials going on in Europe about the one infusion of Reclast, he didn't want to recommend that yet.
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SpecialK, thank you for the info. I didn't know that about the Reclast, so that is something I will definitely have to ask about if and when I decide to stop the Prolia. The increase in pain from this last shot was considerable and I'm hoping it tapers off soon. Do let us know if you hold steady on you next Dexa.
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minus two,
How have you fared with the prolia?
Ive tried boniva but gave me bad reflux. Ive been taking arimidex for 4.5 yrsrs now and Im very close to osteoporosis my mo has wanted me on a bone med but Ive been stubborn. And I need to see an endocrinologist another stubborn ive put off
But Im very achey lately from the arimidex or worsening bones…
Any feedback would be helpful
Mamao
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MamaOz - Doing well w/Prolia. I've never had any side effects. My Dexa numbers hover between osteoporosis & osteopenia after 5-1/2 years of Prolia. Luckily I have had no dental issues to deal with. My new endocrinologist is in favor of a "new" Fosamax that I believe is weekly instead of daily - but I too had problems with oral meds years ago and don't want to switch. He recommends that I continue with Prolia for now but I know I can't keep on forever.
That said - my BC was ER/PR negative both times so have not taken any hormonal therapy. But I did smoke for 40 years, which also destroys your bones.
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I am so glad I found this subject/discussion.
I was DX with IDC BC in 2011. I had a lumpectomy, 33 radiation treatments and my MO started me on Arimidex. I am post-menopausal so that made sense but I also had osteoporosis. Arimidex attacks the bones so I questioned my MO about prescribing it. She then switched me to Tamoxifen after one year. I took it for 5 years which all she said I needed. She said continuing it might cause blood clots - one if the possible side effects.
Fast forwarding to now I have been taking Boniva monthly. I also take calcium tablets and Vit D3. Two years ago my dexa scan showed I had osteopenia numbers so my internist was satisfied with my progress.
Last December I had another dexa scan that showed a 4% bone loss in my hip. Now she wants me to get the Prolia shots and won’t prescribe Boniva anymore. I am very active with exercise so I’m not a sedentary person.
I’m in a quandary about what to do. Prolia is expensive. I have BC/BS but they only pay 50% after you meet your deductible. Ours is $3k. So far I guess fortunately I have yet to meet my deductible. Unfortunately that means about $3-4k out of pocket. In addition I have almost constant dental issues so I worry about the those side effects of Prolia. I know there is no generic version and that’s whythe cost is so high. Ditto for Reclast.
All of you are so well versed in bone issues. What would you do in my case?
Thanks.Diane
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edwards - here is a link to some patient assistance from Amgen, looks like it might work to assist with your out of pocket costs, but not familiar with the details. The info says it can be tandem to insurance coverage. I had my first Prolia without yet receiving the auth from insurance due to a paperwork hold up and my MO's office had me fill out a form to get the used dose replaced for free (an Amgen program also) if my insurance denied. Fortunately for me insurance was never an issue over the course of the 12 Prolia injections I received. In your shoes I might strongly consider the Prolia, especially if you can work out the cost assistance, particularly since you are active. My BFF (no breast cancer) has your identical situation with the hip bone loss, plus osteoporosis in her forearms, and she walks, mountain bikes, road bikes, and plays soccer on several tournament level teams, so is vigorously exercising at least 5 days a week - I encouraged her to start Prolia after she could not tolerate oral meds either. Might be good to have a chat with your dental folks beforehand though. I had routine dental care during Prolia, but also did Invisalign - which was slowed by Prolia - then an extraction/implant pretty quickly after I stopped - no issues.
https://www.amgenassist360.com/patient/prolia-cost-assistance
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Minus twoThank you for your reply💞
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I am getting a Prolia shot this afternoon. Insurance approval came though. I still don't know what that means as far as my out of pocket, thank you for posting the assistance link!
I am in year 4 of the hormonal therapy and on the 5 year plan. So, here's hoping that if I get 4 doses before next DEXA is due that will be all that I need. A little nervous, but not much.
edwards750 let us know what you decide.
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My oncologist would like me to have a Reclast infusion instead of trying Prolia. I'm scared of both frankly. It feels like estrogen blockers we take are a robbing Peter to pay Paul situation since every drug fixes one system while damaging another. I'm at a loss as to what to do. I've been diagnosed with osteopenia and just want it to stay where it is, lol, and not get any worse but I'm not sure that's possible.
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MamaOz,
I've been taking Armidex and getting Prolia injections for almost 5 years. I've done relatively well on both. The typical aches and pains with some days worse than others. The Prolia took a while to work and moved me from osteoporosis to osteopenia.
When I thought I was stopping Arimidex this spring ( 5 more years now BCI results) I started seeing an endocrinologist. He's taking over my Prolia injections and monitoring my bone health.
A couple of things to consider. It's important to have good dental health and hygiene when taking any of these bisphosphonates. There's a very rare chance of ONJ that's associated with invasive dental surgery i.e. tooth extractions. However, again it is very rare and precautions can be taken. Just let your dentist know if you should decide to move forward with any bisphosphonates.
It seems to me that whatever our decisions may be there is a risk/ benefit analysis to consider. These choices arenever easy.
Blesssings all
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