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

If you are askibg this of me, i am on Prolia. I will have a DEXA in anout 9 months to assess my progress after about 2-1/2 years on Prolia. The next time that i see my rheumatologist, i will ask again anout Prolia.

Just a note about Prolia vs Forteo–Prolia myst be given as an injection in the doctor’s office, so it is covered as part of the doctor by insurance. Since Forteo is self-administered, it is covered by the drug plan part of insurance. Mine was always covered, but i gave always wondered if Medicare drug plans would cover Forteo.

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I am going to do the 4th year of Prolia thru Dec of 2017 and then a DEXA scan to see where we are….decide from there but it was discussed to go to Forteo. We’ll see. I had no issues with insurance.

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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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I appreciate your response and that of others in the group about the efficacy of Forteo and Prolia, but I am disappointed that no one mention how much improvement (% according to a dexa-scan) they have made. I have 3 friends who had the 2-year treatment with Forteo. Results were 0%, 2% and 5% improvement. I don't happen to think that small amount of improvement is worth the risks involved with Forteo and the user reviews I've read are not at all reassuring as some reported horrendous pain and disability after starting the treatment. About Prolia, same thing – small improvement (2 %) that hardly compensates for the risks involved. A doctor in Canada even told a traveling companion of mine  - "Don't you DARE go on Prolia – it's very hard on the system."

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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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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.

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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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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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@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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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!

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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.

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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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