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Topic: Good/bad experiences with Prolia?

Forum: Bone Health and Bone Loss — Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Mar 11, 2016 07:16AM

conniehar wrote:

I will most likely be starting Prolia in the next couple weeks. I am 48 with osteo. I have tried Actonel and can't take it and have had two infusions of Reclast and have not gotten any improvements on my scans. The bone loss is getting worse. I exercise often and focus on weight bearing exercises, take Calcium ,Vit D and magnesium. My current endo sent me to another specialist and no one seems to be able to find a cause for my continued bone loss.

I was terrified to take the Reclast due to horror stories I found on-line but I did it and didn't have any side effects. I am now am terrified to take Prolia. When I go to askapatient.com, there are a ton of posts from people with debilitating pain, etc. I have seen a few positive posts on here about Prolia but am still scared. Given my age, I feel like I can't just ignore it, but nothing I am doing is helping.

Thanks!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Posts 181 - 192 (192 total)

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Jan 11, 2018 03:28PM MinusTwo wrote:

Veeder - the new study showed that following up Prolia with a biosphosphonate did NOT keep the bones from reabsorbing. So you didn't miss any benefits.

Yes, TMJ is a well known side effect. Particularly for an extraction. I made sure all my dental work was done before I started. Both my periodontist & dentist agreed with what your docs said - stop for 6 months before invasive dental work.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 12, 2018 04:38PM Veeder14 wrote:

Hi Minus Two,

Actually the doctors wanted me to be treated with a bisphosphonate after the Forteo treatment. But I choose Prolia which isn't technically one.

Maybe the 6 months off Prolia for dental work is becoming standard but it sure was a hassle at the time and only worked because I didn't take the next injection. Thanks for writing in.

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/7/2018 Hormonal Therapy 6/30/2018
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Jan 24, 2018 12:41AM Shelly52 wrote:

Hi Cajun. Hope you are well. I just had my 2nd dexa scan. Had osteopenia diagnosis after the first and was very worried it would have progressed. Happy to say that it did not. I’m still osteopenic but holding. Yay! I am taking prolia every six months and am religious about my calcium chew and 3000 mg of Vit D daily. It must be doing the trick! Wishing you good tesults, too

Shelly52 Dx 6/9/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 7/22/2015 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 9/10/2015 AC + T (Taxol) Hormonal Therapy 2/21/2016 Femara (letrozole) Hormonal Therapy 3/29/2017 Aromasin (exemestane) Surgery Prophylactic ovary removal
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Jan 24, 2018 01:32PM EastcoastTS wrote:

I'm set to start Prolia soon. (Endo appt today) Nothing surprising but need to read up more on it.

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 24, 2018 01:44PM - edited Jan 24, 2018 01:45PM by ElaineTherese

It looks like I'll be starting Prolia in April! I've been on Aromasin since February 2015, and I've gone from borderline osteopenia to full-blown osteoporosis. My MO originally prescribed weekly Fosamax, but she thinks she's found a way to get the insurance to pay for Prolia. From a purely practical standpoint, I'm looking forward to Prolia. The Fosamax hasn't been too bad, but it's been weekly and it has those odd instructions about drinking tons of water and remaining upright for at least 30 minutes after taking it. Every 6 months? Prolia sounds awesome!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jan 24, 2018 03:05PM chronicpain wrote:

ElaineThere, if prolia is not approved, there is a once a month formulation of risedronate,(also a bisphosphonate ),that is just as effective as weekly fosamax for OP and much more convenient, and is cheaper than prolia if you have to pay off insurance.

After a decade of autoimmune problems, Dx 10/2017 at age 63, IDC, Left, 9mm, Oncotype 13, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2-, 11/22/2017 Lumpectomy, Arimidex. Declined radiation.
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Jan 24, 2018 03:15PM ElaineTherese wrote:

Thanks, chronicpain. I will certainly mention that to MO in April if she can't work things out with insurance. These drugs are all relatively new to me! (My nephew, a pharmacist, calls them "old lady drugs." -- Thanks, kid!)

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jan 24, 2018 05:54PM MinusTwo wrote:

Met with w/my GYN today before fourth Prolia injection (every 6 months). She agrees with my MO that I should stay on this for 5 years, lay off a year, and then go back for another 5 years. The OB/Gyn practice she is with has totally changed their protocol for biosphosphonates (like Fosamax). Apparently there are several studies that show long term use with biosphonponates leaves bones brittle and susceptible to breaking. They no longer recommend those drugs for osteopenia. So far (8 years into the study) they are not seeing the same problems with Prolia.

As with the previous 3 shots, I have had no reaction and no side effects.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 25, 2018 05:34AM EastcoastTS wrote:

Someone posted a recent link to maker of Prolia about them covering the difference in what you insurance does not pay. I think something outside $25. I searched for the link but didn't find it. I will try again.

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 2, 2018 03:16AM EastcoastTS wrote:

I found the link:

https://www.proliasupport.com/

Helpful!

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 17, 2018 09:01AM bride wrote:

Minus Two,

We keep missing each other... Prolia has been shown to increase your risk of breaking your thigh bone (of all things). Your MO should have told you this before starting treatment. And Prolia does produce flu-like symptoms.

I’m now at that awkward stage where I will only see my docs at Emory 3 more times. Although my RO has been attentive, my MO has pawned me off on her NPs who don’t do much. So I’m starting to see specialists in my tiny town. There’s a big difference and I feel like I have to badger everyone — I still have significant issues from my cancer treatment and I’m feeling like I’m falling through the cracks. Despite exercise, vitamins, and Prolia my bones, especially my back are getting worse.

I hope you’re doing well.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Apr 9, 2018 02:57PM Lili46 wrote:

I haven't posted in several years and happened to see this thread when I went on tonight searching for some advice on osteoporosis treatment. I was diagnosed with osteopenia and then osteoporosis after my breast cancer treatment. I held off on taking medication until my rheumatologist voiced how concerned he was about my declining bone density. I have celiac disease, went through early menopause due to breast cancer treatment and I have a strong family history of osteoporosis. I had 3 Prolia injections in 2012-2013. My bone density stabilized so my doctor and I decided it was ok to take a "drug holiday" and see how I did. My 2017 DEXA scan showed that I had further decline in bone density in my spine so he wanted me to go back on Prolia. I had 2 injections in 2017. Six days after my 2nd injection I fell on my hip on my driveway walking 2 dogs and fractured my femur in two. I am a healthy, fit 56 year old so this was shocking to say the least! My xrays were consistent with that of an atypical femur fracture most likely caused by Prolia. I don't want to scare anyone because this is a rare side effect of Prolia but when you are the one that it happens to it is devastating. I won't get into all the surgical repair details and rehab postop but it was a tough 3 months. I wanted to let you know that it can happen. Prolia can also affect your immune system. During my recovery I came down with the flu and pneumonia. Weigh the risks vs. benefits when making this decision. Research all you can about Prolia and then make your decision. I'm trying to figure out what I am going to do for my bones going forward. I know you can all relate. Best of luck to you all.

Dx 6/10/2008, IDC, <1cm, Stage IA, Grade 2, 1/13 nodes, ER+/PR+, HER2-

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