1. < Osteoporosis & Bone Health

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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windyshores | @windyshores | Jul 11, 2023
In reply to @cmdw2600 "I too had significant hair loss that I believe is from Prolia. I had five injections..." + (show)
@cmdw2600

I too had significant hair loss that I believe is from Prolia. I had five injections over 2 1/2 years and decided to stop. My endocrinologist told me I had to do something and we landed on Evista because it can reduce the risk of breast cancer, which I have had. But in reading articles about the drug, I found a person shouldn’t take it if they’ve had BC! I stopped taking it and am now using homeopathic methods. Will be meeting with my integrative medicine doctor tomorrow and will report back if I learn anything useful.

I really don’t want to take Reclast as it too lists possible hair loss as side effect. I know bones are more important than hair, but it’s alarming to be able to be able to see your skull! Many oral medication are off the table for me due to GI issues.

Thanks to all for sharing knowledge and experiences.
Cindy

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@cmdw I have been told that I could take Reclast once, or even start with a test dose, after Tymlos. My docs keep talking about the dangers of stopping Prolia and the urgent need to lock in gains with Reclast. They tell me that bone loss and fracture risk rise significantly if you don't do a bisphosphonate afterward. Depending on monitoring I am hoping for just one or two Reclasts.

I thought Evista was good for breast cancer patients, might even be preventative, but not sure it is strong enough to use against the effects of stopping Prolia.
Online:
"Evista is used to treat or prevent osteoporosis in postmenopausal women. Evista is also used to reduce the risk of invasive breast cancer in postmenopausal women who have osteoporosis or who are otherwise at risk of invasive breast cancer. Evista is not a cancer medication and will not treat breast cancer."

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1 reply
cmdw2600 | @cmdw2600 | Jul 14, 2023
In reply to @windyshores "@cmdw I have been told that I could take Reclast once, or even start with a..." + (show)
@windyshores

@cmdw I have been told that I could take Reclast once, or even start with a test dose, after Tymlos. My docs keep talking about the dangers of stopping Prolia and the urgent need to lock in gains with Reclast. They tell me that bone loss and fracture risk rise significantly if you don't do a bisphosphonate afterward. Depending on monitoring I am hoping for just one or two Reclasts.

I thought Evista was good for breast cancer patients, might even be preventative, but not sure it is strong enough to use against the effects of stopping Prolia.
Online:
"Evista is used to treat or prevent osteoporosis in postmenopausal women. Evista is also used to reduce the risk of invasive breast cancer in postmenopausal women who have osteoporosis or who are otherwise at risk of invasive breast cancer. Evista is not a cancer medication and will not treat breast cancer."

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Thank you, windyshores, for spending so much time responding to those on this forum.

I recently consulted with my integrative medicine doctor and he is on board with Evista so I am going back on it. I’ll try not to read too much!

Thanks again! Cindy

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donna33 | @donna33 | Jul 14, 2023
In reply to @kathy2016 "I WANT TO THANK THOSE WHO REPLIED TO MY ISSUES WITH MY CONCERN OF THE DRUG..." + (show)
@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.
I have had one injection of Prolia and my legs hurt so badly when I walked outside, I had to stop every 5 or 10 minutes to rest. This went on for at least 2-3 months.

Now I'm under pressure to let my MD know within a few days, if I am going to get the next injection. I am also taking bone building supplements, calcium citrate, eating healthy, and PT exercises for strengthening. I do not want to take any more of this drug but have been told my osteoporosis is severe in some places.
When I was having so much pain, I was not able to even do the exercises or walk much, so it seems that Prolia side effects defeated the purpose of being able to do these things my bones needed to be strong.
Please pray for me also to make the right decision.

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debrajean674 | @debrajean674 | Jul 20, 2023

I've taken it before but now I have to go to a bone doctor cuz my bones has not not gotten better so he's supposed to figure that out the medicine you're going to take is really damages your teeth so if you have any teeth problems go to your dentist before you take it and really think about it before you take it it's not bad but it does cause a lot of side effects thank you Debbie

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salisbury2491 | @salisbury2491 | Aug 5, 2023

Has anyone experienced low blood platelets after going on Prolia. Mine are running low and seems like this has happened after going on Prolia

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2 replies
milkweed | @milkweed | Aug 6, 2023
In reply to @salisbury2491 "Has anyone experienced low blood platelets after going on Prolia. Mine are running low and seems..." + (show)
@salisbury2491

Has anyone experienced low blood platelets after going on Prolia. Mine are running low and seems like this has happened after going on Prolia

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Having low platelets is a good reason to see a hematologist. Your endocrinologist is not well versed in this area. If you have a blood disorder early treatment can save your life. Good luck.

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ouachita | @ouachita | Aug 9, 2023

I have had only one Prolia injection 4/21/23 and it will be my only one. I have had significant pain in hips, legs, neck and jaw. The most recent problem has been infection and swelling in the palate and ulcerations in the mouth which has been going on now for over a month. Also awake with extreme salty taste in my mouth. Have had serious long-term sore throat. I am extremely tired and depressed over this issue. Endocrinologist does not think the mouth issue is from Prolia. Doctors do not know how to treat this. My only hope for relief is when my 6 months is up and hopefully this medication will be out of my system. I'll never take another Prolia injfection. It is poison to my body.

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3 replies
windyshores | @windyshores | Aug 9, 2023
In reply to @ouachita "I have had only one Prolia injection 4/21/23 and it will be my only one. I..." + (show)
@ouachita

I have had only one Prolia injection 4/21/23 and it will be my only one. I have had significant pain in hips, legs, neck and jaw. The most recent problem has been infection and swelling in the palate and ulcerations in the mouth which has been going on now for over a month. Also awake with extreme salty taste in my mouth. Have had serious long-term sore throat. I am extremely tired and depressed over this issue. Endocrinologist does not think the mouth issue is from Prolia. Doctors do not know how to treat this. My only hope for relief is when my 6 months is up and hopefully this medication will be out of my system. I'll never take another Prolia injfection. It is poison to my body.

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My docs don't use Prolia unless there is something else.

Now that you have "failed" Prolia maybe you can do Tymlos (or Forteo). I chose Tymlos because the dose on the pen is adjustable so I could start at a low dose and move up. For those of us who are sensitive to meds, this felt like a safer way to start a med. I have had excellent gains even without many days on full dose.

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1 reply
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 9, 2023
In reply to @salisbury2491 "Has anyone experienced low blood platelets after going on Prolia. Mine are running low and seems..." + (show)
@salisbury2491

Has anyone experienced low blood platelets after going on Prolia. Mine are running low and seems like this has happened after going on Prolia

Jump to this post

Hi, @salisbury2491, I moved your discussion and combined it with a discussion titled:

-Prolia treatment for osteoprosis: What is your experience?
https://connect.mayoclinic.org/discussion/prolix-treatment-for-osteoporosis
It is a bit of a lengthy discussion, but a lot of topics are covered in this discussion with a lot of members' experiences on Prolia.

@salisbury2491 - like @milkweed mentioned, low platelets is something you should discuss further with your provider or a hematologist. How long have you been experiencing this symptom and have you discussed it yet with your provider?

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 9, 2023
In reply to @ouachita "I have had only one Prolia injection 4/21/23 and it will be my only one. I..." + (show)
@ouachita

I have had only one Prolia injection 4/21/23 and it will be my only one. I have had significant pain in hips, legs, neck and jaw. The most recent problem has been infection and swelling in the palate and ulcerations in the mouth which has been going on now for over a month. Also awake with extreme salty taste in my mouth. Have had serious long-term sore throat. I am extremely tired and depressed over this issue. Endocrinologist does not think the mouth issue is from Prolia. Doctors do not know how to treat this. My only hope for relief is when my 6 months is up and hopefully this medication will be out of my system. I'll never take another Prolia injfection. It is poison to my body.

Jump to this post

Hi, @ouachita , I moved your discussion and combined it with a discussion titled:

-Prolia treatment for osteoprosis: What is your experience?
https://connect.mayoclinic.org/discussion/prolix-treatment-for-osteoporosis
I'm sorry to hear about your bad experience with Prolia. Have any other treatment options been discussed once your 6 months are up on Prolia?

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