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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My endocrinologist advises staying on Prolia for life (for me). He also advises adding Evenity to the mix, but I'm resisting. After four injections, dexa shows improvement with just Prolia. I've had no perceivable side effects with Prolia. So far, my immune system seems to be holding up (no Covid, as far as I know). But like you, I have an over-active immune system. Mine presents with allergies and asthma. We're all guinea pigs in this experiment. Let's hope it works out.

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I've been receiving prolia injections 2x year since 2015. No side effects and dexa scan from last year shows improvement from readings of the original osteoporosis into the low bone mass range. No dental issues and I have regular dental checkups 2x year.
Best to you all.

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I have been on Prolia for 8 years and I'm in my 70s. I tried Evenity, but it was much too strong. Not sure what the future brings, but I have a hiatal hernia and the bisphosphonate pills would cause acid reflux.
hsum4

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@veriska

I want to thank everyone for your reply. It helps with my decision. I am at -2.9. Has anyone started Prolia at or above that degree?

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Sort of yes but not exactly!!!!! I get my first injection of Prolia on July 5, so stay tuned!! My numbers are much worse tha n your 2.9 tho.

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@guinivere

Sort of yes but not exactly!!!!! I get my first injection of Prolia on July 5, so stay tuned!! My numbers are much worse tha n your 2.9 tho.

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@guinivere can you remind us why you are doing Prolia and not a bone builder like Tymlos, Forteo or Evenity? It is hard to keep everyone's story straight! Have you already done a bone builder?

ps The question from @veriska is not clear: "Has anyone done Prolia at or above" -2.9. Does this mean "below" -2.9 meaning worse, or "above" -2.9, which means better? There is always confusion with the negative values of DEXA scores...

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@kathy2016

I WANT TO THANK THOSE WHO REPLIED TO MY ISSUES WITH MY CONCERN OF THE DRUG Prolia I REFUSED THE DRUG FOR THE LAST TIME. I'm still concerned ,in pain falling,dizzy,fatique,confused,bone indensity is a T2 -2.5.Truly no doctor has stated that's a good or bad score? I now have 9 doctors no one is on the same page.My neck,middle part of my back,lower,legs cramp,numbing of fingers ,again CONFUSION I feel it's more than ostaporois! I'm tired of being passed around doctor to doctor.Bone density test showed high risk factor, MRI tested for MS, lesions white matter found, I'm so tired confused I don't have much more strength.Yesterday I went to a orthopedic he looked at all MRIs and stated you have alot going on,ordered a cane/ walker for home, then turned me over to another doctor.My body is sick to me,humped over,I truly can take all this doctor to doctor daily, it's been years, nothing can be determined! I know my body this is not normal.If these doctors knew how scared I am being 58,alone no support system,as well as severe reoccurring depression(which doesn't help) I'd pray instead of just taking insurance money ,I could find help.I look at all these side effects,I don't see a way out.I have all signs of MS,and ostapenia/ and ostaporois,I'm getting worse daily,crumbling daily, I feel ugly with this hump figure of mine, THE PAIN IS UNBEARABLE, BLOOD WORK IS FINE, IM ON CALCIUM/ D 2 TIMES DAILY, I ASK AND PRAY TO GOD WHEN WILL THEY FIND THESE ISSUES!FOLIC ACID,B12 4 TIMES A MONTH VIA SHOT. I DONT FEEL ANY DIFFERENT.JUST WORSE EVERY MORNING I WAKE. THERE SOMETHING THEY ARE NOT LOOKING AT,OR FOR IM TIRED OF TELLING THEM ,I SHOULD JUST GRAB A BRICK AND TALK TO IT,BACK TO TODAY FOR ANOTHER B12 AND COME BACK HOME TO ANOTHER SAID MISERABLE DAY!!!MY HEALTH IS IMPORTANT TO ME,I FIND GOOGLE TO BE MY DOCTOR ,SO SAD!

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Hold on tight, Kathy, it's so hard to go through what you're going through and to be passed around (and over) by doctors doesn't help matters much. Gather your records and find a MD (perhaps a functional MD) that will really listen to you and understand your issues. Medication sometimes is the answer but then again, lifestyle changes (diet, exercise, etc.) could be sufficient to help alleviate some of your issues. I'll pray for you to find some answers.

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@windyshores

@guinivere can you remind us why you are doing Prolia and not a bone builder like Tymlos, Forteo or Evenity? It is hard to keep everyone's story straight! Have you already done a bone builder?

ps The question from @veriska is not clear: "Has anyone done Prolia at or above" -2.9. Does this mean "below" -2.9 meaning worse, or "above" -2.9, which means better? There is always confusion with the negative values of DEXA scores...

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WS, I decided on Prolia basically for simplicity sake. Running a cat rescue out of my house can get pretty hectic & Prolia just seemed simpler, plus easier just to stay with that forever cause who knows how long forever could be at age 86!

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@guinivere

WS, I decided on Prolia basically for simplicity sake. Running a cat rescue out of my house can get pretty hectic & Prolia just seemed simpler, plus easier just to stay with that forever cause who knows how long forever could be at age 86!

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@guinevere makes perfect sense. My 83 year old friend has been on it for awhile. (I am getting on myself!) I have become a cat lover. What great work you are doing.

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@windyshores

@guinevere makes perfect sense. My 83 year old friend has been on it for awhile. (I am getting on myself!) I have become a cat lover. What great work you are doing.

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The rescue is named Mew Haven & is a 501c3 that I founded back in 2007. I can't even begin to tell you how many cats & kittens we have saved, how many lived here with my own cats while awaiting adoption. It has been so so worthwhile! Have loved every minute! Right now I have 4 of my own & 5 fosters. The only problems has been donations = sometimes up & sometimes down. Right now we are in a down but I hope that will turn around

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@sungal

My endocrinologist advises staying on Prolia for life (for me). He also advises adding Evenity to the mix, but I'm resisting. After four injections, dexa shows improvement with just Prolia. I've had no perceivable side effects with Prolia. So far, my immune system seems to be holding up (no Covid, as far as I know). But like you, I have an over-active immune system. Mine presents with allergies and asthma. We're all guinea pigs in this experiment. Let's hope it works out.

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They work differently so the rec probably makes sense. Prolia builds bone and Evenity helps keep your gains. I have had no problems on either drug. I have had 5 months of Evenity so far, and used Prolia for years with no issues. Good luck!

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