Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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I had Reclast infusions for about 3 years in my early 50's. I had no side effects. I discontinued because my insurance deductible went up so high. When I was 65, a bone scan showed I was now at -4.5 in my lumbar spine and my hips were osteopenia. I went to a PA that was not obviously well-read about osteoporosis. I asked him to set me up for a Reclast infusion. Six months after the first infusion, I had some lower back pain but I am not sure if that was the Reclast. My bone density in my spine improved 6.1 percent that year. I had another Reclast infusion the next year and only improved .1 percent. I started Prolia 8 months ago. I have no side effects and actually my spine doesn't hurt in places it use to! I also eat 6 prunes daily, eat my daily need of natural calcium and take Vitamin D and Vitamin K. I walk 45 minutes a day and lift weights. I hope this helps.

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@pami

I had Reclast infusions for about 3 years in my early 50's. I had no side effects. I discontinued because my insurance deductible went up so high. When I was 65, a bone scan showed I was now at -4.5 in my lumbar spine and my hips were osteopenia. I went to a PA that was not obviously well-read about osteoporosis. I asked him to set me up for a Reclast infusion. Six months after the first infusion, I had some lower back pain but I am not sure if that was the Reclast. My bone density in my spine improved 6.1 percent that year. I had another Reclast infusion the next year and only improved .1 percent. I started Prolia 8 months ago. I have no side effects and actually my spine doesn't hurt in places it use to! I also eat 6 prunes daily, eat my daily need of natural calcium and take Vitamin D and Vitamin K. I walk 45 minutes a day and lift weights. I hope this helps.

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Welcome, @pami. Thanks so much for diving right in on one of our most frequent "wonderments" aka "questions". I hope others can identify with your experience. I am really happy for you and hope you continue to have success with the medications you have chosen. Maybe I should up my daily prunes to 6. I currently only eat 3. I take mine to avoid constipation. Why do you take them?

May you have happiness and the causes of happiness.
Chris

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@pami

I had Reclast infusions for about 3 years in my early 50's. I had no side effects. I discontinued because my insurance deductible went up so high. When I was 65, a bone scan showed I was now at -4.5 in my lumbar spine and my hips were osteopenia. I went to a PA that was not obviously well-read about osteoporosis. I asked him to set me up for a Reclast infusion. Six months after the first infusion, I had some lower back pain but I am not sure if that was the Reclast. My bone density in my spine improved 6.1 percent that year. I had another Reclast infusion the next year and only improved .1 percent. I started Prolia 8 months ago. I have no side effects and actually my spine doesn't hurt in places it use to! I also eat 6 prunes daily, eat my daily need of natural calcium and take Vitamin D and Vitamin K. I walk 45 minutes a day and lift weights. I hope this helps.

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@pami with a DEXA of -4.5 I am wondering why you were not put on a bone-builder like Tymlose, Forteo or Evenity rather than an anti-resorptive like Prolia (or Reclast). Do you think you need a second opinion? (I have several spinal fractures with spine at -3.9 and am on Tymlos.)

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@windyshores

@pami with a DEXA of -4.5 I am wondering why you were not put on a bone-builder like Tymlose, Forteo or Evenity rather than an anti-resorptive like Prolia (or Reclast). Do you think you need a second opinion? (I have several spinal fractures with spine at -3.9 and am on Tymlos.)

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Hi Wendy,
Just finished my 2 yrs. of Forteo and got my 1st injection yesterday for prolia. I have to have other options. My hair is falling out and now I am going to have to buy a wig. Side effects mentioned are what I deal with on a daily basis only to worsen with this med. I have RA hands, back, toes, everywhere. I have Lupus, Sjogen's, Scleroderma, Reynaud's in addition to everything and recently treated for Afib. My options are limited but I don't want to live in pain if I can help it. Thanks for letting me share! 😊

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I used Prolia for 1 year (2 injections). Hated it. My hair thinned, the texture changed, and hair broke/splinted above the check line. I also had lower back aches every day. So, I transitioned to Evenity. No side effects. I hope my hair grows back. I'm trying low dose pills of minoxidil for hair loss.

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@jsmigielski

I used Prolia for 1 year (2 injections). Hated it. My hair thinned, the texture changed, and hair broke/splinted above the check line. I also had lower back aches every day. So, I transitioned to Evenity. No side effects. I hope my hair grows back. I'm trying low dose pills of minoxidil for hair loss.

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I was on Foxamax years ago with no positive results. I was just put on Prolia and a couple days after my first shot I broke out in hives. I took Benadryl - they did go away but came back in different areas. As long as I took the Benadryl they went away and did not become severe. Because of the allergic reaction it’s now suggested that I go on Reclast. All these drugs have horrible side effects and they all work differently on each one of us. So really, what to do? Which to choose?

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@guera60

Hi Wendy,
Just finished my 2 yrs. of Forteo and got my 1st injection yesterday for prolia. I have to have other options. My hair is falling out and now I am going to have to buy a wig. Side effects mentioned are what I deal with on a daily basis only to worsen with this med. I have RA hands, back, toes, everywhere. I have Lupus, Sjogen's, Scleroderma, Reynaud's in addition to everything and recently treated for Afib. My options are limited but I don't want to live in pain if I can help it. Thanks for letting me share! 😊

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@guera60 I also have lupus and afib. My doc wants to follow my Tymlos with a partial dose (1/3) of Reclast to see how I react. He also says that if I have enough in the next infusion, I might be able to take a break from meds.

I am also going to ask about following up with Evenity if my bones have not improved enough.

I have patient assistance for 18 months of Tymlos. I believe the time limit has been lifted for Forteo- so it can be taken past two years.

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Thank you for amsgte see t

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De momento bien. Solo lo he usado tres veces. Pero me gustaría que si es tan peligroso de retirará del mercado. Crea ansiedad

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I have been having Prolia injections for about 3 years with two remaining as prescribed by my endocrinologist. Side effects have been subtle; but have noticed jaw pain and hip pain which may or may not be the result of Prolia. I definitely hav had some hair thinning and itchy scalp. No sores or noticeable other sources. Am due to have my next shot in January and my last would be July. I am very uncomfortable about continuing. Our endocrinologist is no longer practicing here so have an appointment in April with a different one two hours away. Ugh!!!
Any thoughts or advice?

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