Prolia Shots for Increasing Osteopenia
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Only 3 shots so far and no side effects
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Smo- are you still on the AI drugs? They cause many side effects, including fatigue and hair loss. I had not even really noticed the hair loss until my final year of taking the AIs and had so much thinning on the top of my head. Within about a year of going off them, a lot of things got better there although I still have less hair on top than on the sides and back. I never felt great on the AIs, felt a lot better when I went off of them.
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I think there is a danger of mixed messages, or missed info, when administration of bone building drugs is done by docs (oncologists and other non bone specialists) that are not familiar with the intricacies of these medications. I am glad that minus was able to consult with a specialist in this and report back the info received. That said, I am one who did stop Prolia cold turkey, with no apparent bad effect. This may be because I was an exceptional responder to Prolia with a fantastic bone recovery over the six years I was on it, and I stopped aromatase inhibitors shortly after stopping Prolia. I had stable osteopenia prior to cancer treatment that did not worsen and I took no drugs for it until chemo and letrozole pushed me past osteopenia to the beginning of osteoporosis. I had a regularly scheduled (every two years) DEXA a year after stopping Prolia with no loss of BMD, and have just had one a month ago, which is two years later - so a total of three years after stopping Prolia - with no discernable loss either. But, I may be an outlier in that regard. Two years ago I had an emergency molar extraction and my maxillofacial surgeon was aware of my letrozole and Prolia use. He proceeded cautiously by extracting and doing a bone graft, waiting six months for the jaw implant, then another six months for the crown on top. I have had no issues at all in regard to the extraction or implant. Not ideal timing, but not within my control, and feel fortunate to get through unscathed.
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SpecialK, I'm with you. I see an endocrinologist for my bones -- and my MO strongly urged me to do so. My MO knows all things cancer-related and my endo is the one to see for anything endocrine related.
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I've never had a problems w/hair loss. Are you on any other meds Smo? LIke Tamox or Als? How far are you out from active treatment? Have you tried Biotin?
Sometimes I get tired but I haven't really attributed it to Prolia. I have my 10th shot tomorrow. I'll keep closer track & report back.
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Thank you all for the information
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I think hair loss is listed as a side effect for all bone drugs, unfortunately. Something about how the drugs impact your cholesterol, which impacts your hair.
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Thanks for the info Rah2464, I think you are correct.
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Hi! I was just diagnosed with osteoporosis and my MO prescribed Prolia which I am to begin after I finish radiation treatment on 3/30/21 and before I begin Letrozole. Does anyone on Prolia have TMJ or grind their teeth? Have you had any SE to your jaw? Thanks!
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Hi! I was just diagnosed with osteoporosis and my MO prescribed Prolia which I am to begin after I finish radiation treatment on 3/30/21 and before I begin Letrozole. Does anyone on Prolia have TMJ or grind their teeth? Have you had any SE to your jaw? Thanks!
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I was on Prolia for four years and with excellent results. I grind my teeth. Prolia had no negative impact on teeth, maybe positive (they didn’t deteriorate while I was on Prolia.) I wish my MO would let me stay on it longer
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I just had Prolia shot # 10. That means 5 years. I do grind my teeth - both at night and all day long. So far I have avoided ONJ.
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Prolia side effect
I would like to share with you that Arimidex caused me to have osteoporosis. In August 2020, my oncologist told me that I needed to get Prolia injections. He assured me that I would be fine. I have always been afraid of it's side effects. I agreed to get the injections, so he injected me in August 2020. On February 11, 2021 I asked him to check my ear because it was bleeding a little and an ENT had stated that I could have cancer. After checking my ear, oncologist advised me to get the biopsy that had been recommended by my ENT, that he didn't think it was cancer and to take the results to him so he could take care of it. He gave me a second shot of Prolia ton 2/11/21 (I'm so upset he gave me a second shot of Prolia. I'm pretty sure he knew what I had when he saw my ear before ordering the second shot). To make the story short, I have been diagnosed with osteonecrosis of the ear canal. Now my otologist recommends a 2 hr surgery or daily drops + using earplugs every time I shower or swim. I am very lucky to have found it myself at an early stage, but it's still hard to deal with. I don't know if will have surgery or if I will try to keep it under control with drops and earplugs. I exercise 1 hour daily, eat well and take calcium, magnesium and D3 supplements.0 -
Prolia side effect
I would like to share with you that Arimidex caused me to have osteoporosis. In August 2020, my oncologist told me that I needed to get Prolia injections. He assured me that I would be fine. I have always been afraid of it's side effects. I agreed to get the injections, so he injected me in August 2020. On February 11, 2021 I asked him to check my ear because it was bleeding a little and an ENT had stated that I could have cancer. After checking my ear, oncologist advised me to get the biopsy that had been recommended by my ENT, that he didn't think it was cancer and to take the results to him so he could take care of it. He gave me a second shot of Prolia ton 2/11/21 (I'm so upset he gave me a second shot of Prolia. I'm pretty sure he knew what I had when he saw my ear before ordering the second shot). To make the story short, I have been diagnosed with osteonecrosis of the ear canal. Now my otologist recommends a 2 hr surgery or daily drops + using earplugs every time I shower or swim. I am very lucky to have found it myself at an early stage, but it's still hard to deal with. I don't know if will have surgery or if I will try to keep it under control with drops and earplugs. I exercise 1 hour daily, eat well and take calcium, magnesium and D3 supplements.0 -
Wow Cali - so sorry. I didn't even know you could get ONJ of the ear.
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Cali58 - wow is right. I'm so saddened you had to add this to the BC. Hard choices on watching it or surgery. I'd need to do a lot of research before deciding. Best wishes to you.
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Hi,
I’ve been on Prolia since May 2017. I finally got a mouth guard from my dentist because I grind my teeth. I should have done it years ago. Hope this helps.
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Hi CindyNY: What research did you do? I just diagnosed with osteoporosis, and my MO recommended me either take Ibandronate(Bovina) or Prolia shot. Thanks.
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Sue - I went to an endocrinologist (bone specialty) this year for the first time. He said he would NEVER recommend Boniva. Sorry, not sure why since I wasn't interested anyway. I'm still taking Prolia shots after 5 years with no problems. I love the fact that it's 'one & done' every 6 months. He said at this time if I were to make a change he would recommend Fosamax. Be sure to get any dental work done before you start.
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I see an endocrinologist for my bones too. My dad's a retired endocrinologist and urged me to do that (I um didn't listen until my MO referred me--oops).
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I saw my oncologist on Friday and he is saying 3 years on Prolia - just finished year 2. DEXA in August so will see what/if any improvement with my osteoporosis. I said to the PA before I saw the oncologist that there seems to be no standard protocol and she goes yes!!! I have great trust in my oncologist since the first appointment when he spent 2 hours with DH and me. I'll ask more questions after DEXA scan.
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Sue98 - I was referencing osteonecrosis of her/Cali58 ear canal. She has option of surgery or just keeping an eye on it. If need to research more to make a decision.
For myself I see an endocrinologist. I take generic Fosamax 1x a week. I was approved for an infusion but ended up staying with 1x a week pill. Prior to BC I was fine, a year in on AI I had osteopenia. One yr on generic Fosamax osteopenia was gone. I figured it has been working and just stuck with it.
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Hi Minus Two: Thank you so much for your response and advice. So you had total for 5 years Prolia, is every patient has to have for 5 years? I'm so afraid the side effect from this medication.
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Hi CindyNY: Thank you, the Fosamax is working for you. I'll check with MO to find out whether or not she'll recommend for Fosamax.
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Sue - my endochrinologist tells me research says 5 years is definitely safe and likely 10. However, you need to do any dental work before you start and avoid extractions once you're on it.
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Well poo. I had hoped my endocrinologist would move up my DEXA scan by a couple of months as I am due for a refill on the Tymlos. If you aren't familiar w/ Tymlos, it's a daily injection for osteoporsis and is heart-stopping expensive. He said no and in fact he wants to wait yet another year for the DEXA scan and for me to stay on the Tymlos for a good 18 to 24 months if I'm tolerating it well.
I am tolerating it, well as much as you can tolerate anything that requires you to stick a needle in your belly every day, but sheesh. My first and only DEXA scan was in 2018 so I'm already at the 3 year mark for that test.
Poop.
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Edj3 I think that is ridiculous that you cannot get another DEXA scan to determine progress. It should be yearly once it is determined you are at risk until you establish a course of treatment that is effective. Can you push for a DEXA perhaps from your Gyn?
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No gyn alas, I have just one ovary left so there's nothing to examine
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edj3 - my bff has had elevated liver enzymes for years and has had every liver lab/imaging/biopsy with no diagnosis. Bone disease can drive these numbers up but she wanted a status but couldn't get any of her docs to order a DEXA because she was under 60. I suggested she check with a few imaging centers around her to see what the cost for a cash customer was - she only paid $125 and needed no prescription. Might be worth satisfying your curiosity if you can't get your doc to order one for you.
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I've been osteoporosis for years and when I had my last one , it still said two years - no gyn here as well - oophorectomy 14 years ago. Onc Rx DEA scan every two years - when I was on AIs, every year. My questions will be after August DEXA and 2 years on Prolia if results are not what we hope will I con't for just one more year - I guess I'll worry about that at next 6 month check up. I said to onc PA that there is no standard of protocol and and her response was "yes".
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