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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@heyjoe415
Such great questions! There is an osteoporosis discussion group on this site where all the various meds for osteoporosis are discussed by people who have researched and used various options. I myself referred to it a great deal when I received the news that I have advanced osteoporosis of the spine, and that my doc would soon be discussing med options with me. Blessings on your research, there is a lot to consider and no “one size fits all” answer (and further complicated by what your insurance will support, as I recently realized when I had to change meds or try to pay about $3200 a month out of pocket!)

REPLY

heyjoe415, these same questions have been asked since they started treating osteoporosis in the late 1990s. We're all late. It is interesting to look back to 2014 and find the same questions and some excellent timeproof answers.
All the medication are very dangerous for some, completely safe for others. For most these drugs are inconvenient, uncomfortable and very much better than fractures.
Here is my very biased opinion:
There are basically two types of osteoporosis drugs--those that build bone and those that stop bone from breaking down.
All the bisphosphonates stop the normal process of bone renewal by stopping the initiating process of breaking the bone down. The stop the osteoclasts--the acid producing cells that remove fissured bone and initiate the production of osteoblasts--the cells that lay down new bone. They prevent fracture by collecting older bone. Osteoclasts are part of the immune system, so people with autoimmune disease are more likely to have side effects. In 1995 they were approved by the FDA. They were basically the only thing we had to slow the breaking of our bones until November 6, 2002.

The FDA approved the second type of medication the anabolic Forteo--my absolute favorite. It emulates the normal manner of bone building with and analog of parathyroid hormone. It pulls calcium from your bone telling your body to produce osteoclasts and osteoblasts and get busy repairing bone. In 2017 FDA approved a newer (perhaps better) version of the parathyroid analog-- Tymlos. My second favorite medication. Some people cannot tolerate either of these medications.

I'll give short shrift to the two following medications Prolia and Evenity. I don't like the mechanism of action of either drugs. And can't be trusted to give fair assessment.
Prolia was originally considered antiresporptive like the bisphosphonates and Eventiy was considered anabolic.
Each medication is actually both antiresorptive and anabolic.
Anabolic in a different way. They don't build normal bone. The new bone is modeled bone. It is more like a scaffold deposited on the outer most portion of the bone. Bone Mineral Density is usually intense with both medications over a short period of time. They both can prevent fractures, which is the goal. I don't care when they were approved and even think that they should not have been approved.
Prolia stops the production of osteoclasts efficiently but does so by stopping them in a late stage of development. When you stop Prolia you have to take another antiresorptive to protect bones against an avalanche of collected osteoclasts that can cause cascade fractures.
Evenity has a black box warning for cardiac issues. Since most of will die of heart disease the drug falls out of consideration for me. But real world experience may prove the black box to be overcautious. Still it produces modeled bone that is thick and lack the cannulation that gives bone integrity and strength.
Most of what I've written is highly biased, and must be questioned during your quest for the best osteoporosis medication for yourself.
This post is intended to excite opposing opinion to give your the full spectrum of views.
Thank you for your empathy, Joe and welcome to Connect.

REPLY

@heyjoe415
Hi Joe,
Welcome to the conversation!
You will hear positive as well as negative stories about pharmaceuticals in general, but I think the stories about osteoporosis drugs and their side affects top the list.
Every drug has side affects. You have to weigh the risks against the benefits.
I’d say the choice to start osteoporosis meds is a personal one and should be based on your doctors opinion AND your research. Had I done the research I would have never started osteoporosis meds.
My FRAX score was low, meaning my chance of having an osteoporotic fracture in the next 10 years was low. My doctor at the time, used fear to get me to agree to start prolia. It turned out to be the worst thing I could have done.
I won’t go into all I’ve dealt with over the past 7 years, it’s too long a story for this post, but please know, that not everyone experiences negative side effects, and for some people the benefit they gain definitely outweighs the risks.
It’s a personal decision that should be made after close consideration of the facts at the time. Learn all you can about this. I have found this group to be very knowledgeable.
Best,

REPLY
@gently

heyjoe415, these same questions have been asked since they started treating osteoporosis in the late 1990s. We're all late. It is interesting to look back to 2014 and find the same questions and some excellent timeproof answers.
All the medication are very dangerous for some, completely safe for others. For most these drugs are inconvenient, uncomfortable and very much better than fractures.
Here is my very biased opinion:
There are basically two types of osteoporosis drugs--those that build bone and those that stop bone from breaking down.
All the bisphosphonates stop the normal process of bone renewal by stopping the initiating process of breaking the bone down. The stop the osteoclasts--the acid producing cells that remove fissured bone and initiate the production of osteoblasts--the cells that lay down new bone. They prevent fracture by collecting older bone. Osteoclasts are part of the immune system, so people with autoimmune disease are more likely to have side effects. In 1995 they were approved by the FDA. They were basically the only thing we had to slow the breaking of our bones until November 6, 2002.

The FDA approved the second type of medication the anabolic Forteo--my absolute favorite. It emulates the normal manner of bone building with and analog of parathyroid hormone. It pulls calcium from your bone telling your body to produce osteoclasts and osteoblasts and get busy repairing bone. In 2017 FDA approved a newer (perhaps better) version of the parathyroid analog-- Tymlos. My second favorite medication. Some people cannot tolerate either of these medications.

I'll give short shrift to the two following medications Prolia and Evenity. I don't like the mechanism of action of either drugs. And can't be trusted to give fair assessment.
Prolia was originally considered antiresporptive like the bisphosphonates and Eventiy was considered anabolic.
Each medication is actually both antiresorptive and anabolic.
Anabolic in a different way. They don't build normal bone. The new bone is modeled bone. It is more like a scaffold deposited on the outer most portion of the bone. Bone Mineral Density is usually intense with both medications over a short period of time. They both can prevent fractures, which is the goal. I don't care when they were approved and even think that they should not have been approved.
Prolia stops the production of osteoclasts efficiently but does so by stopping them in a late stage of development. When you stop Prolia you have to take another antiresorptive to protect bones against an avalanche of collected osteoclasts that can cause cascade fractures.
Evenity has a black box warning for cardiac issues. Since most of will die of heart disease the drug falls out of consideration for me. But real world experience may prove the black box to be overcautious. Still it produces modeled bone that is thick and lack the cannulation that gives bone integrity and strength.
Most of what I've written is highly biased, and must be questioned during your quest for the best osteoporosis medication for yourself.
This post is intended to excite opposing opinion to give your the full spectrum of views.
Thank you for your empathy, Joe and welcome to Connect.

Jump to this post

@gently thank you for all this information! Very well researched. written and explained - I couldn’t have said any of this better!

I don’t think your opinion is biased at all - what you have written makes a lot of sense and shows you have done your homework!

I hope @cooper78, @babby and @heyjoe415 don’t miss seeing this.

REPLY
@rashida

@gently thank you for all this information! Very well researched. written and explained - I couldn’t have said any of this better!

I don’t think your opinion is biased at all - what you have written makes a lot of sense and shows you have done your homework!

I hope @cooper78, @babby and @heyjoe415 don’t miss seeing this.

Jump to this post

I agree an excellent informative review, thank you very much.

REPLY
@sondrachristo1

@heyjoe415
Hi Joe,
Welcome to the conversation!
You will hear positive as well as negative stories about pharmaceuticals in general, but I think the stories about osteoporosis drugs and their side affects top the list.
Every drug has side affects. You have to weigh the risks against the benefits.
I’d say the choice to start osteoporosis meds is a personal one and should be based on your doctors opinion AND your research. Had I done the research I would have never started osteoporosis meds.
My FRAX score was low, meaning my chance of having an osteoporotic fracture in the next 10 years was low. My doctor at the time, used fear to get me to agree to start prolia. It turned out to be the worst thing I could have done.
I won’t go into all I’ve dealt with over the past 7 years, it’s too long a story for this post, but please know, that not everyone experiences negative side effects, and for some people the benefit they gain definitely outweighs the risks.
It’s a personal decision that should be made after close consideration of the facts at the time. Learn all you can about this. I have found this group to be very knowledgeable.
Best,

Jump to this post

@sondrachristo1 I too was scared into taking Prolia! My bone scan at the time had only shown slight degeneration of my cervical discs and I was told because of my age (early seventies?) I am at high risk of falling and getting fractures, etc. I am glad I happened to read some comments on the Facebook page on Prolia shortly after my first injection and refused to take the second six months later (much to my then physician’s chagrin) and of course, any subsequent doses.

My current physician had me do an overdue follow up bone density test which shows pretty much the same result as the last test, and she has prescribed Actonel which I take once a month. She too has mentioned I may need to go on Prolia if the next bone density test shows bone loss or fractures. I have no intention of going back on Prolia and certainly will keep your suggestions for alternate drugs in mind if Actonel does not do its job!

Incidentally, I did have a fall in July last year but suffered no broken bones or fracture although I had not taken any bone building drugs since I stopped Prolia after the first injection a few years ago. I did go back on Actonel recently at my current doctor’s suggestion but can’t remember if I had just started taking it around the time I fell, or very shortly after that fall.

Both my former doctor (had to leave her only because I moved out of Toronto and couldn’t travel two hours to see her) and current doctor in my new city are very good, but both seem to favour Prolia.

REPLY
@rashida

@sondrachristo1 I too was scared into taking Prolia! My bone scan at the time had only shown slight degeneration of my cervical discs and I was told because of my age (early seventies?) I am at high risk of falling and getting fractures, etc. I am glad I happened to read some comments on the Facebook page on Prolia shortly after my first injection and refused to take the second six months later (much to my then physician’s chagrin) and of course, any subsequent doses.

My current physician had me do an overdue follow up bone density test which shows pretty much the same result as the last test, and she has prescribed Actonel which I take once a month. She too has mentioned I may need to go on Prolia if the next bone density test shows bone loss or fractures. I have no intention of going back on Prolia and certainly will keep your suggestions for alternate drugs in mind if Actonel does not do its job!

Incidentally, I did have a fall in July last year but suffered no broken bones or fracture although I had not taken any bone building drugs since I stopped Prolia after the first injection a few years ago. I did go back on Actonel recently at my current doctor’s suggestion but can’t remember if I had just started taking it around the time I fell, or very shortly after that fall.

Both my former doctor (had to leave her only because I moved out of Toronto and couldn’t travel two hours to see her) and current doctor in my new city are very good, but both seem to favour Prolia.

Jump to this post

@rashida
Doctors do seem to favor Prolia, and in my opinion it’s the worst of the drugs currently available. Mostly because of the rebound fractures should you have to stop the drug.
That’s what happened to me, ended up with 6 pelvic fractures.
I’m glad to hear you didn’t fracture after falling, that’s a good sign.
The dexa isn’t the best predictor of fracture anyway, it cannot tell the quality of the bone, only the quantity, and even that can’t be trusted.
Just stick to what’s working and don’t let anyone scare you into treatment your gut tells you to stay away from.
Wish I had done that.

REPLY
@sondrachristo1

@rashida
Doctors do seem to favor Prolia, and in my opinion it’s the worst of the drugs currently available. Mostly because of the rebound fractures should you have to stop the drug.
That’s what happened to me, ended up with 6 pelvic fractures.
I’m glad to hear you didn’t fracture after falling, that’s a good sign.
The dexa isn’t the best predictor of fracture anyway, it cannot tell the quality of the bone, only the quantity, and even that can’t be trusted.
Just stick to what’s working and don’t let anyone scare you into treatment your gut tells you to stay away from.
Wish I had done that.

Jump to this post

@sonsondrachristo1 I certainly won’t, after reading about Prolia! It is very true that drugs - and even supplements - are not a “one size fits all”. I am so glad I stopped Prolia after the first dose!

Both my former physician and my current physicians are very caring and proactive but I guess even the best can be swayed by a very convincing pharmaceutical representative …!

REPLY
@gently

cooper78, you might ask for a prescription for either Forteo or Tymlos. In my opinion they build the best most integrated and stongest bone. If you were to experience side effects with one, you might try the other. The medication clears your system in 24 hours. They both, incidentally, improve joint cartilage.

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Tymlos is difficult to get Insurance to pay for. I wish I could get approved, because I have heard of positive results

REPLY
@gently

heyjoe415, these same questions have been asked since they started treating osteoporosis in the late 1990s. We're all late. It is interesting to look back to 2014 and find the same questions and some excellent timeproof answers.
All the medication are very dangerous for some, completely safe for others. For most these drugs are inconvenient, uncomfortable and very much better than fractures.
Here is my very biased opinion:
There are basically two types of osteoporosis drugs--those that build bone and those that stop bone from breaking down.
All the bisphosphonates stop the normal process of bone renewal by stopping the initiating process of breaking the bone down. The stop the osteoclasts--the acid producing cells that remove fissured bone and initiate the production of osteoblasts--the cells that lay down new bone. They prevent fracture by collecting older bone. Osteoclasts are part of the immune system, so people with autoimmune disease are more likely to have side effects. In 1995 they were approved by the FDA. They were basically the only thing we had to slow the breaking of our bones until November 6, 2002.

The FDA approved the second type of medication the anabolic Forteo--my absolute favorite. It emulates the normal manner of bone building with and analog of parathyroid hormone. It pulls calcium from your bone telling your body to produce osteoclasts and osteoblasts and get busy repairing bone. In 2017 FDA approved a newer (perhaps better) version of the parathyroid analog-- Tymlos. My second favorite medication. Some people cannot tolerate either of these medications.

I'll give short shrift to the two following medications Prolia and Evenity. I don't like the mechanism of action of either drugs. And can't be trusted to give fair assessment.
Prolia was originally considered antiresporptive like the bisphosphonates and Eventiy was considered anabolic.
Each medication is actually both antiresorptive and anabolic.
Anabolic in a different way. They don't build normal bone. The new bone is modeled bone. It is more like a scaffold deposited on the outer most portion of the bone. Bone Mineral Density is usually intense with both medications over a short period of time. They both can prevent fractures, which is the goal. I don't care when they were approved and even think that they should not have been approved.
Prolia stops the production of osteoclasts efficiently but does so by stopping them in a late stage of development. When you stop Prolia you have to take another antiresorptive to protect bones against an avalanche of collected osteoclasts that can cause cascade fractures.
Evenity has a black box warning for cardiac issues. Since most of will die of heart disease the drug falls out of consideration for me. But real world experience may prove the black box to be overcautious. Still it produces modeled bone that is thick and lack the cannulation that gives bone integrity and strength.
Most of what I've written is highly biased, and must be questioned during your quest for the best osteoporosis medication for yourself.
This post is intended to excite opposing opinion to give your the full spectrum of views.
Thank you for your empathy, Joe and welcome to Connect.

Jump to this post

Thanks for all this awesome information Gently, very much appreciated. I'm asking because my sister-in-law has osteoporosis and was concerned about the listed side effects.

I had no idea there were different types of drugs that do certain things - build bone, maintain bone for ex. Given the complexity, a very knowledgeable Dr is an absolute must.

Again, my thanks for opening my eyes to this world of which I know so little. Thank you for the time you put into your reply. Very thoughtful.

Joe

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