Bone density drugs

Posted by cooper78 @cooper78, Jan 20 9:06pm

Tried actonel, evista and evenity all with side effects serious joint pain and pain in leg bone and jaw with evenity. Really need some help for what to try as bone density has deteriorated. Thank you.

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@ronma

I understand your concern about osteoporosis medications and the side effects you've experienced. This is definitely a challenging situation that many people face.
Unfortunately, it sounds like you've already tried several different classes of bone-strengthening medications and experienced significant side effects with each one. Finding the right osteoporosis treatment that's both effective and tolerable can be quite difficult.
Some thoughts on your situation:
While I can't recommend specific medications since I'm not a medical professional, there are a few approaches you might discuss with your doctor:

Consider asking about denosumab (Prolia), which works differently than the medications you've tried
Discuss whether a lower dose of one of the previously tried medications might reduce side effects while still providing some benefit
Explore non-pharmaceutical approaches that might help alongside medication, such as weight-bearing exercise, calcium and vitamin D supplementation, and fall prevention strategies

For anyone tracking their physical activity as part of bone health management, like 2 miles for walk is better so it is about 4800 steps. (howmanysteps.net/2-miles-to-steps/)
I'd strongly recommend discussing these challenges with your doctor or perhaps seeking a second opinion from an endocrinologist who specializes in osteoporosis. They can review your specific medical history, bone density results, and previous medication experiences to help determine the best path forward.
Would it be possible for you to consult with a specialized bone health clinic? Many larger medical centers have dedicated osteoporosis or metabolic bone disease clinics with specialists who have extensive experience handling complex cases like yours.

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I have taken Prolia for three years and the last two doses made me wish I could die. I had such excruciating pain I couldn’t get of bed for weeks at a time. I couldn’t bend down to pickup anything off the floor. I have Spondylolisthesis as well. I couldn’t get the courage to go to grocery store for fear of falling. I couldn’t host Christmas for the first time in 30 years. My doctor now insists I go on Reclast Infusions. My first infusion is 3/11/25 and I’m terrified. Anyone on here have any info on Reclast?

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@cooper78

I have been using collagen type 1 and 3 for about 2 years!

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@cooper78 which brand, and where do you get it?

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@babby

I have taken Prolia for three years and the last two doses made me wish I could die. I had such excruciating pain I couldn’t get of bed for weeks at a time. I couldn’t bend down to pickup anything off the floor. I have Spondylolisthesis as well. I couldn’t get the courage to go to grocery store for fear of falling. I couldn’t host Christmas for the first time in 30 years. My doctor now insists I go on Reclast Infusions. My first infusion is 3/11/25 and I’m terrified. Anyone on here have any info on Reclast?

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@babby going off Prolia puts you at risk of spontaneous fractures, even if you go on relay drugs. Be very careful with your movements.

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@babby

I have taken Prolia for three years and the last two doses made me wish I could die. I had such excruciating pain I couldn’t get of bed for weeks at a time. I couldn’t bend down to pickup anything off the floor. I have Spondylolisthesis as well. I couldn’t get the courage to go to grocery store for fear of falling. I couldn’t host Christmas for the first time in 30 years. My doctor now insists I go on Reclast Infusions. My first infusion is 3/11/25 and I’m terrified. Anyone on here have any info on Reclast?

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Babby, I second the advice to watch out for prolia rebound fractures. I had 3 injections, and could not tolerate more than 6 months of fosamax as a relay drug, almost 2 years later I had 6 fractures of the pelvis.
The rheumatologist I was seeing admitted these were due to stopping the prolia.
I had to stop the prolia due to the many immune system issues it was causing. Not to mention I lost over 50% of my hair.
The implications of prolia rebound are real!!
My life has been forever changed because of that drug.
You’ll need to get on reclast as a relay drug and have your bone turnover markers monitored.
Good luck.

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@rashida

@cooper78 which brand, and where do you get it?

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I use NativePath mail order. Look up on line!

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@rashida

@babby going off Prolia puts you at risk of spontaneous fractures, even if you go on relay drugs. Be very careful with your movements.

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I researched Reclast and it’s recommended because you can’t stay on Prolia forever. Right? I’m a bit confused here. Please clarify what you know. Thank you.

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@sondrachristo1

Babby, I second the advice to watch out for prolia rebound fractures. I had 3 injections, and could not tolerate more than 6 months of fosamax as a relay drug, almost 2 years later I had 6 fractures of the pelvis.
The rheumatologist I was seeing admitted these were due to stopping the prolia.
I had to stop the prolia due to the many immune system issues it was causing. Not to mention I lost over 50% of my hair.
The implications of prolia rebound are real!!
My life has been forever changed because of that drug.
You’ll need to get on reclast as a relay drug and have your bone turnover markers monitored.
Good luck.

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I can’t believe this! I’m really upset my doctor put me in this position. She said it was necessary I go another Bisphosphonate. I’m not doing this if it’s as high risk as not doing anything at all. I’m really angry I was put on these drugs especially with Spondylolisthesis

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I have been told by docs that you have to stay on Prolia forever. It all is very frustrating I know.

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@babby

I have taken Prolia for three years and the last two doses made me wish I could die. I had such excruciating pain I couldn’t get of bed for weeks at a time. I couldn’t bend down to pickup anything off the floor. I have Spondylolisthesis as well. I couldn’t get the courage to go to grocery store for fear of falling. I couldn’t host Christmas for the first time in 30 years. My doctor now insists I go on Reclast Infusions. My first infusion is 3/11/25 and I’m terrified. Anyone on here have any info on Reclast?

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I've had 2 Reclast infusions with no side effects. Just be sure to drink lots of water the day before and the day of the infusion. Also take a Tylenol or two. I asked for my infusion to be an hour long rather than the standard 15-30 minute. First time is scary but I was fine.

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@babby

I can’t believe this! I’m really upset my doctor put me in this position. She said it was necessary I go another Bisphosphonate. I’m not doing this if it’s as high risk as not doing anything at all. I’m really angry I was put on these drugs especially with Spondylolisthesis

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All the Drs. I saw (South Florida) scared the daylights out of me if I did not go one Prolia- Iwas on it January of 24 and had horrible side effects with no concern from my Dr. Was only on it for 6 months- I am now on actonel 35 mg . once a week and have some gastro issues and trouble swallowing bulky food. I have to go for a barium swallowing test to see what is going on. I am very fit - exercise tremendously and have some osteoporosis- not horrible readings- however I had endometrial cancer in 2017 and I really believe the chemo attacked my bones.

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