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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@mayblin

@ritafarmer could you share the types of exercise regimen you are doing? Tia

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My exercise regimen is not what it should be. I have this wonderful expensive NUSTEP sitting beside my recliner that I want to be using. It's the only thing I have used that doesn't make some part of my body hurt. The day after it was delivered (~5 years ago), I fell on my sidewalk and ended up with stitches in a 4-inch cut across my knee. I spent 5 months of this year caring for my sister who had a badly broken ankle, so I wasn't even in my home. I can't walk for exercise because I get stress fractures in my feet. This year, one of the stress fractures progressed to a complete fracture. I am back in my home and am trying to arrange pieces of furniture so that I can finally use my NUSTEP.

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@ritafarmer

My exercise regimen is not what it should be. I have this wonderful expensive NUSTEP sitting beside my recliner that I want to be using. It's the only thing I have used that doesn't make some part of my body hurt. The day after it was delivered (~5 years ago), I fell on my sidewalk and ended up with stitches in a 4-inch cut across my knee. I spent 5 months of this year caring for my sister who had a badly broken ankle, so I wasn't even in my home. I can't walk for exercise because I get stress fractures in my feet. This year, one of the stress fractures progressed to a complete fracture. I am back in my home and am trying to arrange pieces of furniture so that I can finally use my NUSTEP.

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Thank you Rita farmer for your reply! And sorry to hear abt ur fall… hope all is well and you could use ur NUDTEP soon!

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@hlp123

I understand your pain. I transitioned off of Prolia with one year of an infusion of Reclast. My year of Reclast was up in March. My endocrinologist continues to insist that Prolia did not cause my pain, and that my bones are going to break if I don't take another biphosphonate. I don't know if I am doing the correct thing, but I don't want anymore of those medications. I did not have the severe pain in my joints and muscles while on Reclast.
Good Luck

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Do you mean that after Reclast, you still have to have another med? What would that be?

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@dna41

Do you mean that after Reclast, you still have to have another med? What would that be?

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My Endocrinologist is telling me that I need to take another biphosphonate. I do not have to decide until March of 2024, but I do not want to take another medication. The doctor just smiles and says, "Then your bones are going to break". Very stressful for me because I react very strongly to the biphosphonates and I still have to address getting dentures. I will be honest and admit that I just keep going into denial about the whole situation, and at this point I just want to get through the Holidays with the grandchildren and enjoy them and hope they enjoy me.
God Bless all of you !

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@yvie

I have been on Prolia for 3 years and I don’t seem to have any negative side effects or else I am just too stupid to realize it! I had spinal surgery after breaking three bones and since the surgical procedure, I have been unable to walk without a roll about because my balance has not been adequate to do so. However, recently my legs are stronger and my balance is better so that I can walk with just a cane. That to me is miraculous! I eat a healthy diet as recommended by the Mayo Clinic and take several pills including Gabapentin 200 mg. before bedtime together with .5 mg. of Clonazepam and I sleep like a baby most nights (which is also miraculous). I don’t get out much because I stopped driving after the surgery because my right leg was not as strong as it used to be and I was concerned about my ability to brake when needed to avoid an accident but I am considering trying to drive safely once again. I spend a lot of time praying and asking our Lord to accept any suffering that I may be going through (since this Osteoporosis has left me with limited ability) without feeling sorry for myself. Life is not always easy but (on the other hand) it was not meant to be. I am a Christian and I believe that if we love our Heavenly Father (and ALL OF HIS CHILDREN) and accept any suffering that comes our way while we are on this earth , we will live for all eternity
with a joy that we cannot even imagine, So, hang in there my dear friends and make the best decisions about your illness that you can and try to live life with both acceptance and thanksgiving for all the good things in your life.
Yvie@Yvie

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You are an inspiration to me. I admire your faith and strength that I am sure has helped you to improve . I hope that you continue to get better .

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I have been using Prolia for a little over 5 years with no ill side effects.

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I have been using Prolia for several years with no side effects. I have several friends who are taking it and they also have no side effects. It has helped my spine. My hips are still osteoporotic but have improved.

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@hlp123

My Endocrinologist is telling me that I need to take another biphosphonate. I do not have to decide until March of 2024, but I do not want to take another medication. The doctor just smiles and says, "Then your bones are going to break". Very stressful for me because I react very strongly to the biphosphonates and I still have to address getting dentures. I will be honest and admit that I just keep going into denial about the whole situation, and at this point I just want to get through the Holidays with the grandchildren and enjoy them and hope they enjoy me.
God Bless all of you !

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I see. I thought that after the relay drug, Reclast, there would be no further meds. Didn't realize I would be on a medication for life. Wishful thinking I guess.

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@dna41

I see. I thought that after the relay drug, Reclast, there would be no further meds. Didn't realize I would be on a medication for life. Wishful thinking I guess.

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Exactly !
I thought that any benefits I got from a year on Prolia would be locked-in by a year on Reclast. Apparently there is no guarantee that this is the case. I have talked my endocrinologist into ordering another dexa scan for February so I can see "exactly" what the status of my bones are, before I have to make any decisions in March.
Wishing you all the best !

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@doreenr

I have been using Prolia for a little over 5 years with no ill side effects.

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My Dr keeps wanting me to go on Prolia. My fear of knee & jaw fractures scare me because I have two knees done & also grind teeth at night. 36” spine fusion & part of neck is fused.
I took Forteo for 2 years before the huge back surgery.
Should I still try Prolia?
Is there something better?
I’m still in pain 24/7 with back & neck too.

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