Prolia treatment for osteoporosis

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

@dolan

I am currently on my 3rd year of Prolia. I have NO side effects. I ended up switching doctors after approximately 15 years because of insurance problems/non reimbursements. I was ‘freaked’ out of my comfort zone and in the middle of treatment. I saw a new endocrinologist who agreed with the treatment as I have Systemic Mastocytosis and have had multiple fractures as well. I will continue on Prolia this year (June/May injections). See the endocrinologist and have my 1st DEXA scan after the start of Prolia. We may return to the 2 year Forteo as I had incredible results from that several years ago. I would highly recommend Prolia if needed.

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I have no had a DEXA scan since starting Prolia 3 years ago. I will have one Dec 2017 or early 2018. But Forteo I have tremendous results. Somewhere in these blogs I had my numbers in regards to Forteo. The rep for the company was so impressed by the results she used my ‘numbers’ when educating others. I don’t have the numbers off hand but if you look back someone asked that.

Liked by amber67

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@dolan

I am currently on my 3rd year of Prolia. I have NO side effects. I ended up switching doctors after approximately 15 years because of insurance problems/non reimbursements. I was ‘freaked’ out of my comfort zone and in the middle of treatment. I saw a new endocrinologist who agreed with the treatment as I have Systemic Mastocytosis and have had multiple fractures as well. I will continue on Prolia this year (June/May injections). See the endocrinologist and have my 1st DEXA scan after the start of Prolia. We may return to the 2 year Forteo as I had incredible results from that several years ago. I would highly recommend Prolia if needed.

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@dolan, I looked back through your posts and found this post from September 7th, 2016:

“I finally got a chance to quickly go thru my massive binder of medical records….Sept 1998 (back -3.8)(hip -1.7)….on Fosamax the first time…Aug 2004 after Forteo (neck .842) (spine(.760). back on 70 mg Fosamax in 2006 with an increased 3.3% right hip, 2.2% left hip and 10% spine. Both hips considered normal with slight osteopenia. 3rd year of Prolia will be complete Dec 2016.”

Are those the numbers you were referencing?

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@hummy2

I have heard that the new bone generated by Prolia is a thinner bone than what your body produced prior to Prolia. This thinner bone would not be addressed on the bone scan so you think you are increasing mass but it’s a thinner mass. Has anyone heard this?

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Hi @hummy2, and welcome to Connect. Great question about Prolia. I think you may find this conversation of help, “Prolia treatment for osteoporosis.” You can go to this discussion and join in the conversation with many other members discussing Prolia here, http://mayocl.in/2qhHDrk.

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I have heard that the new bone generated by Prolia is a thinner bone than what your body produced prior to Prolia. This thinner bone would not be addressed on the bone scan so you think you are increasing mass but it’s a thinner mass. Has anyone heard this?

Liked by sparkles4ever

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Hello I have the same question the prolia.Mri shows ostaporois measuring T2 -2.5 I SUFFER FROM REOCCURING DEPRESSION,STIFF JOINTS,BACK PAIN,OFF BALANCE,AT TIMES FALL . MY 2 ND DOCTOR STATED HE DID NOT WANT ME TO HAVE THIS DRUG, I HAVE THE SIDE EFFECTS.I very fatique,swelling in feet and ankles,Lowe and middle back pains.As well they found lesion on my brain. The radialgist stated all leads to MS. So I have a nerorolgist who feels he needs another MRI to be conclusive! I’m getting very upset,memory loss, unstable.Doctors have not let me work now going on 2 years. I’m very confused, I know they keep stating all these issues but no one is listening to me. I know my body, depression itself hurts,(anxiety panic attacks PTSD due to a rape,where I was left for dead! I give up. I would think 2 specialists would at least show me the MRI findings, for which I gave them both a copy.I don’t know the serverty of my own health @ 58 ! I’m lost getting upset, it’s one or the other daily!

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@JustinMcClanahan

Hello @veriska, @crenhov, @ritafarmer, and @cairnmama, welcome to Connect and thank you for posts about Prolia for osteoporosis. Thank you for jumping in and addressing @veriska‘s concerns about the side effects of Prolia.

I would like to also invite @kayelle, @tessie, @dolan, @janicec8957, @donna13, and @jaleen, to share their experiences with taking Prolia for osteoporosis in this discussion as well.

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Justin, I am senior ‘moderate’ density, next injection due Jan. 2018. As you know every 6-mths. so I’m due for 5th injection. I read Vit. D doesn’t do much, if useful at all however, with Calcium I faithfully take both. At 95 years of age my Mother broke her hip. She will never walk again. I suffer hip/back stiffness – maintain appts. with chiropractor. I don’t want the injection anymore, but I will ask doc for new scan. If the result doesn’t indicate improvement I would like to know the next step, if available.

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@JustinMcClanahan

Hello @veriska, @crenhov, @ritafarmer, and @cairnmama, welcome to Connect and thank you for posts about Prolia for osteoporosis. Thank you for jumping in and addressing @veriska‘s concerns about the side effects of Prolia.

I would like to also invite @kayelle, @tessie, @dolan, @janicec8957, @donna13, and @jaleen, to share their experiences with taking Prolia for osteoporosis in this discussion as well.

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Thank you for your response.I have 3 doctors involved. Due to all my conditions my doctor is stating he does not want Prolia injected in me due to the side effects.I have all side effects. I'm so concerned in pain,numbness,falling, major depression,swelling,and can't remember what day it is. They just keep adding more meds.I feel no difference.Im 59 and I have had enough fatique,feeling bad,doctors,therapy. I'm lost, I have no support till I seen this group. Should I fall, I get worried who what and when someone would notice! I'm to young for all this,fingers hands numb,can't stand long.This all started by looking into me having MS. It has become a nightmare! I'm upset daily.And looking at the drugs they want to inject,I would hope at one point they would show me the images of my spine and lesions on my brain.Its something new all the time. I am having my 3MRI this morning at another hospital??? Don't get it.Havent worked for 2 yrs,and lost everything,home is next.SSD hearing is feb2018. I've been denied,so I had to hire a laywer.Doctors said no work,what is a human to do? It's just me and scared to death!

Liked by tikigod18

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@kathy2016

Hello I have the same question the prolia.Mri shows ostaporois measuring T2 -2.5 I SUFFER FROM REOCCURING DEPRESSION,STIFF JOINTS,BACK PAIN,OFF BALANCE,AT TIMES FALL . MY 2 ND DOCTOR STATED HE DID NOT WANT ME TO HAVE THIS DRUG, I HAVE THE SIDE EFFECTS.I very fatique,swelling in feet and ankles,Lowe and middle back pains.As well they found lesion on my brain. The radialgist stated all leads to MS. So I have a nerorolgist who feels he needs another MRI to be conclusive! I’m getting very upset,memory loss, unstable.Doctors have not let me work now going on 2 years. I’m very confused, I know they keep stating all these issues but no one is listening to me. I know my body, depression itself hurts,(anxiety panic attacks PTSD due to a rape,where I was left for dead! I give up. I would think 2 specialists would at least show me the MRI findings, for which I gave them both a copy.I don’t know the serverty of my own health @ 58 ! I’m lost getting upset, it’s one or the other daily!

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Hi All. I have been on Prolia for almost 2 years and have severe osteoporosis. I fell and fractured my left hip in April of 2016 and recovered from that. Last August I started experiencing intermittent pain in my left femur which has gotten progressively worse. I am now taking Gabapentin and am going to see a pain specialist. Has anyone else experienced severe pain like this from prolia? I have scoliosis and spinal stenosis and the pain in my lower back has gotten a lot worse since being on prolia.

Liked by sparkles4ever

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I am 85 and have all the health problems you mentioned – severe osteoporosis, scoliosis, spinal stenosis and lower back pain. Two years ago my doctor wanted me to go on an injection drug – Forteo or Prolia – and I said “no”. I said I wanted to treat my health problems with exercise and good nutrition, including increased calcium and vitamin D. I feel great and am living an active life even with some back pain. Apparently you are having a bad reactions to the drugs put into your system by Prolia – and your doctor is putting even more drugs into your system with Gabapentin – a strong pain medication with possible serious side effects! (Look it up online – I did that and couldn’t believe your doctor would prescribe that medication for you!) Take charge of your own body – find out what you can do to live a more healthful, active life. Eat right, exercise smart and consider changing to a new doctor, one that does more than just write prescriptions for yet another pain killer!!

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@kathy2016

Hello I have the same question the prolia.Mri shows ostaporois measuring T2 -2.5 I SUFFER FROM REOCCURING DEPRESSION,STIFF JOINTS,BACK PAIN,OFF BALANCE,AT TIMES FALL . MY 2 ND DOCTOR STATED HE DID NOT WANT ME TO HAVE THIS DRUG, I HAVE THE SIDE EFFECTS.I very fatique,swelling in feet and ankles,Lowe and middle back pains.As well they found lesion on my brain. The radialgist stated all leads to MS. So I have a nerorolgist who feels he needs another MRI to be conclusive! I’m getting very upset,memory loss, unstable.Doctors have not let me work now going on 2 years. I’m very confused, I know they keep stating all these issues but no one is listening to me. I know my body, depression itself hurts,(anxiety panic attacks PTSD due to a rape,where I was left for dead! I give up. I would think 2 specialists would at least show me the MRI findings, for which I gave them both a copy.I don’t know the serverty of my own health @ 58 ! I’m lost getting upset, it’s one or the other daily!

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Are you lifting items? Bags filled with groceries? Twist or turn – be careful. Think abrupt movements i.e., have you reduced routine habits? Note don’t jump out of bed, but sit up for a minute, then go. To the best of my knowledge Prolia doesn’t cause severe pain. I believe wear and tear is the key during the aging process. I agree with Jaleen; practice gentle, low impact maintenance.

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@kathy2016

Hello I have the same question the prolia.Mri shows ostaporois measuring T2 -2.5 I SUFFER FROM REOCCURING DEPRESSION,STIFF JOINTS,BACK PAIN,OFF BALANCE,AT TIMES FALL . MY 2 ND DOCTOR STATED HE DID NOT WANT ME TO HAVE THIS DRUG, I HAVE THE SIDE EFFECTS.I very fatique,swelling in feet and ankles,Lowe and middle back pains.As well they found lesion on my brain. The radialgist stated all leads to MS. So I have a nerorolgist who feels he needs another MRI to be conclusive! I’m getting very upset,memory loss, unstable.Doctors have not let me work now going on 2 years. I’m very confused, I know they keep stating all these issues but no one is listening to me. I know my body, depression itself hurts,(anxiety panic attacks PTSD due to a rape,where I was left for dead! I give up. I would think 2 specialists would at least show me the MRI findings, for which I gave them both a copy.I don’t know the serverty of my own health @ 58 ! I’m lost getting upset, it’s one or the other daily!

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How can you say that Prolia doesn’t cause severe pain? I googled Prolia just now and this popped up: “Common side effects of Prolia include low calcium levels (especially if you have kidney problems), weakness, constipation, BACK PAIN, MUSCLE PAIN, PAIN IN YOUR ARMS AND LEGS, anemia, diarrhea, or skin problems (eczema, blisters, dry skin, peeling, redness, itching, small bumps)”. I have read on other sites that Prolia can also cause loss of jaw bone and loosening of teeth. This happened to a friend of my daughter-in-law who had been on Prolia. She lost part of her jaw along with teeth and caused her to miss almost a year at work. .
I often have pain in my back but I almost never take a pain pill. Instead, I go the gym and use the treadmill and other exercise machines that will strengthen the muscles in my shoulders, back and legs. I almost always go home pain free. My last bone scan showed that my bones “were stable”, i.e., no additional bone loss from the scan taken two years earlier. My doctor now agrees with my decision to say “no” to all bone drugs. Why aren’t doctors pushing exercise and diet instead of so many drugs?

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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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@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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I’ll be praying for you, Kathy.

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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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I am so sorry that you are going through this. I will be praying for you to find some answers.

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My prayers are with you. Sounds like they’re sending you through the system. Do you have one doctor in the group that you can talk to and have respect for his or her opinion? If so listen. With many involved you’re going to get different opinions and few really know your body. Someone needs to listen to you. Write down your questions and symptoms and present them. I understand about the back changing. I have the same problem. Friend, it is what it is. I can tell you still have a good mind and this is something to be thankful for. Time for you to take charge. You have to trust someone so make a decision. God bless you.

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