1. < Osteoporosis & Bone Health

Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

sewcouture | @sewcouture | Jan 27, 2022
In reply to @hlp123 "I am new to this site. I have had my second injection of Prolia and have..." + (show)
@hlp123

I am new to this site. I have had my second injection of Prolia and have been experiencing 3 months of severe bone and muscle pain !!! Can anyone please help me with advice on how to stop taking Prolia. I want this nightmare to end. I don't know what to take instead of Prolia since I understand that you cannot just stop Prolia. Has anyone out there had a successful outcome after stopping Prolia ? Please help !

Jump to this post

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

REPLY
5 replies
echolsleslie | @echolsleslie | Jan 27, 2022
In reply to @elenamayo "I was reading about osteoporosis vibration belt. Wondering if anyone has discussed this treatment technique with..." + (show)
@elenamayo

I was reading about osteoporosis vibration belt. Wondering if anyone has discussed this treatment technique with their doctors. They say "Low Intensity Vertical vibration machines are effective for osteoporosis. The low intensity vertical vibration machines are the ones that produce a maximum of 0.3 G’s". Maybe as an add-on to Tymlos or other osteoporosis meds.

Jump to this post

I have not heard about this but will
Check into it

REPLY
windyshores | @windyshores | Jan 27, 2022
In reply to @sewcouture "Hi, I took 2 shots of prolia and had the same severe bone and muscle pain,..." + (show)
@sewcouture

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

Jump to this post

I felt the same until I fractured three lumbar vertebrae with one unwise movement. Right now I don't care if I will go bald, be nauseated every day, and have bone pain so I can remain on Tymlos and avoid the excruciating pain and disability of fractures.

REPLY
Teri | @tsc | Jan 27, 2022
In reply to @elenamayo "I was reading about osteoporosis vibration belt. Wondering if anyone has discussed this treatment technique with..." + (show)
@elenamayo

I was reading about osteoporosis vibration belt. Wondering if anyone has discussed this treatment technique with their doctors. They say "Low Intensity Vertical vibration machines are effective for osteoporosis. The low intensity vertical vibration machines are the ones that produce a maximum of 0.3 G’s". Maybe as an add-on to Tymlos or other osteoporosis meds.

Jump to this post

Hi @elenamayo I purchased a Whole Body Vibration Plate exerciser that has three programs for "improving bone density" after reading a review paper, "Whole-body vibration exercise in postmenopausal osteoporosis", Magdalena Weber-Rajek, et al. I started using it in August, did two 15 minute programs a day, then went down to one, and now I'm going back up to two. I'll be able to get another dexascan in 18 mos. so will know the results, but it has really firmed my leg muscles up, more than the strength training exercises I've done. Amazon has a variety of these exercisers, I chose the Eilison Bolt. Whole Body Vibration Exercise isn't appropriate for everyone - so it's important to research it.

REPLY
Teri | @tsc | Jan 27, 2022
In reply to @sewcouture "Hi, I took 2 shots of prolia and had the same severe bone and muscle pain,..." + (show)
@sewcouture

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

Jump to this post

Hi @sewcouture I also take Boron, Vitamin K, and L.Reuteri in addition to Vitamin D, Calcium and Magnesium. Good luck!

REPLY
2 replies
hlp123 | @hlp123 | Jan 27, 2022
In reply to @sewcouture "Hi, I took 2 shots of prolia and had the same severe bone and muscle pain,..." + (show)
@sewcouture

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

Jump to this post

Thank you for your response, Kaye. I am so grateful that we can help each other ! Good Luck to you.

REPLY
jbcobb2380 | @jbcobb2380 | Jan 28, 2022
In reply to @sewcouture "Hi, I took 2 shots of prolia and had the same severe bone and muscle pain,..." + (show)
@sewcouture

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

Jump to this post

I agree with you. I stopped Prolia because of 9 hemorrhagic UTIs in one year. My doctor also told me you can’t stop… 3 years later I am doing ok with bone density scores about the same - Algae Cal and Strontium supplements, weight bearing exercise every morning and walking 5 days a week. All these drugs have terrible side effects.

REPLY
2 replies
windyshores | @windyshores | Jan 29, 2022

How much strontium are you taking? Strontium throws off bone density scans as you probably know.

REPLY
1 reply
sue225 | @sue225 | Jan 29, 2022
In reply to @jbcobb2380 "I agree with you. I stopped Prolia because of 9 hemorrhagic UTIs in one year. My..." + (show)
@jbcobb2380

I agree with you. I stopped Prolia because of 9 hemorrhagic UTIs in one year. My doctor also told me you can’t stop… 3 years later I am doing ok with bone density scores about the same - Algae Cal and Strontium supplements, weight bearing exercise every morning and walking 5 days a week. All these drugs have terrible side effects.

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Wish I was brave enough to just stop .Prolia creates problems if you need/want a dental implant. Even when it comes to extracting the tooth, which just happened, the oral surgeon told me Prolia changes the bone making it much more rigid. The oral surgeon is reluctant to do the implant unless I am off Prolia for 6months. I know the endocrinologist will strongly advise against that and recommend switching to Reclast or Aclasta as it is known in Canada. I really dislike the thought of Aclasta more than I dislike being on Prolia. Also the oral surgeon doesn't like bisphosphonates either when it comes to bone turnover in the jaw! (And he mentioned the danger of osteonecrosis of the jaw).
If a crystal ball could tell me I would be one of the lucky ones to escape spontaneous vertebral fractures I would discontinue Prolia in a heartbeat!

REPLY
3 replies
smyth2022 | @smyth2022 | Jan 29, 2022

I am a 85 year old woman with Osteoporosis. I was on Aromasin for 5 years after breast Cancer and went from Osteopenia to Osteoporosis. I had a yearly infusion of Reclast for five years, which not only stopped further bone loss, but slightly bettered my numbers. I have taken a brake from any meds for 5 years and my last Dexa scan showed osteoporosis. My doctor suggested Evivity, but I am reluctant because of the possible negative effects on cardio and higher risk of stroke. I am of normal weight and have only lost 1" of height. I am physically active (walking, dancing, gardening). I had a PA 3 years ago, of unknown cause, and am on a anti coagulant (Eliquis). My BP is controlled as is cholesterol. I have no known heart problems, kidneys and liver are fine. I am on A PPI for Acid reflux and had flare-ups of gastritis. I am leaning to take another infusion of Reclast as opposed to starting Evivity. My doctor also gave me the choice of Forteo, but I have ruled it out. She is waiting for me to make up my mind, having given me the pros and cons of all three medications. Since my remaining "lifespan" also needs to be considered, and the females in my family tend to life into their 90th, it is also a matter of quality of life. I have never had a broken bone, but I understand when it happens at my age, it may lead to death within a year. Any suggestions?

REPLY
2 replies
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