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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@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.

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@gently, I have this vague recollection of complaints about bisphosphinates back in the early '90s that they left patients with poor-quality bone. Do you know if this is the same type of problem you mention with Evenity & Prolia?

Also, can you point me in the direction of more info re: people with autoimmune problems likely having more problems with the bisphosphinates? I have 3 autoimmune illnesses, so I'd best learn more about this!

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@bayhorse

@gently, I have this vague recollection of complaints about bisphosphinates back in the early '90s that they left patients with poor-quality bone. Do you know if this is the same type of problem you mention with Evenity & Prolia?

Also, can you point me in the direction of more info re: people with autoimmune problems likely having more problems with the bisphosphinates? I have 3 autoimmune illnesses, so I'd best learn more about this!

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@bayhorse
This is just my experience, however, I can tell you that I have several autoimmune conditions and I’ve had issues with 5 different osteoporosis meds. All of them set off a flare of one or more of my autoimmune symptoms.
In addition, prolia actually caused a new autoimmune condition- lichen plano pilarus. I have lost more than 50% of my hair.
I asked my endocrinologist if there was a connection between the meds and my autoimmune conditions, she would not commit to anything.
I know that the cells that are responsible for bone remodeling , osteoclasts and osteoblasts, are part of the immune system, so it seems logical to me that there would be a connection.

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@bayhorse

@gently, I have this vague recollection of complaints about bisphosphinates back in the early '90s that they left patients with poor-quality bone. Do you know if this is the same type of problem you mention with Evenity & Prolia?

Also, can you point me in the direction of more info re: people with autoimmune problems likely having more problems with the bisphosphinates? I have 3 autoimmune illnesses, so I'd best learn more about this!

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bayhorse,
It is the same type of problem. Evenity to a lesser degree. Prolia to a greater degree. Both Prolia and Evenity also create new bone on the outside of your bone work creating as sort of thick scaffold. It looks great on dxa increasing BMD, but it is more brittle bone.
In reading patient experiences, I've noticed that individuals with autoimmune disease have more side effects with bisphosphonates. Osteoclasts, the suppression target of antiresorptive medication, are part of the immune system. The effects seem to depend upon the type of autoimmune disease the patient has.
Worse than just increasing the susceptibility to adverse effect is that some diseases are advanced by the use of antiresorptives. Some though are advantageously repressed by the use of bisphosponates Rheumatoid Arthritis is repressed. There is a new article on SLE indicating that it can be activated by the use of bisphosphonates. There is a concern about mast cells, but I haven't seen anything convincing.
I'm glad that you are looking at this with concern for your vulnerabilities. I didn't want to post a discouraging number of links so have a second comment that you can ignore or explore.
Remember that I am not a medical person and have no personal experience with bisphosphonates. You really have to question anything you read, even when its PubMed.

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@gently

bayhorse,
It is the same type of problem. Evenity to a lesser degree. Prolia to a greater degree. Both Prolia and Evenity also create new bone on the outside of your bone work creating as sort of thick scaffold. It looks great on dxa increasing BMD, but it is more brittle bone.
In reading patient experiences, I've noticed that individuals with autoimmune disease have more side effects with bisphosphonates. Osteoclasts, the suppression target of antiresorptive medication, are part of the immune system. The effects seem to depend upon the type of autoimmune disease the patient has.
Worse than just increasing the susceptibility to adverse effect is that some diseases are advanced by the use of antiresorptives. Some though are advantageously repressed by the use of bisphosponates Rheumatoid Arthritis is repressed. There is a new article on SLE indicating that it can be activated by the use of bisphosphonates. There is a concern about mast cells, but I haven't seen anything convincing.
I'm glad that you are looking at this with concern for your vulnerabilities. I didn't want to post a discouraging number of links so have a second comment that you can ignore or explore.
Remember that I am not a medical person and have no personal experience with bisphosphonates. You really have to question anything you read, even when its PubMed.

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@gently, thanks once again for the information, and for your quick response. No worries that I will consider you a medical expert; I understand you are not. But you do have a great knack for research, and for explaining the research, and I truly value that and am grateful for it.

I do have lupus, so am especially grateful you let me know that there's now some indication that the bisphosphinates can activate SLE. Mine is mostly controlled with drugs, as is my ulcerative colitis. (My third autoimmune gift, celiac disease, I manage with an extremely strict gluten-free diet, and even then have some issues.) I also seem to have mast cell/histamine production issues. I have had to deal with these illnesses for the past 40+ years, and if any of them were to be exacerbated by an osteoporosis drug, I would be angry indeed.

If you would like, feel free to list any number of "discouraging links" that might pertain to the autoimmune/op drug issue. As far as I'm concerned, forewarned is forearmed. And I certainly will need my questions and evidence lined up solidly when I next meet with my endo.

Meantime, thanks again. I wish you all the best!

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@sondrachristo1

@bayhorse
This is just my experience, however, I can tell you that I have several autoimmune conditions and I’ve had issues with 5 different osteoporosis meds. All of them set off a flare of one or more of my autoimmune symptoms.
In addition, prolia actually caused a new autoimmune condition- lichen plano pilarus. I have lost more than 50% of my hair.
I asked my endocrinologist if there was a connection between the meds and my autoimmune conditions, she would not commit to anything.
I know that the cells that are responsible for bone remodeling , osteoclasts and osteoblasts, are part of the immune system, so it seems logical to me that there would be a connection.

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@sondrachristo1, thanks for weighing in on this autoimmune/osteoporosis meds issue. I am so sorry to hear about the effect Prolia had on you, and I appreciate your thoughts.

Wishing you all the best...

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