1. < Osteoporosis & Bone Health

Choosing Our Poison

Posted by njhornung @normahorn, Jun 25 12:36pm

Our bodies are very complex entities. The drugs used to treat Osteoporosis can also affect other functions but that often seems to be ignored or glossed over. I wish some expert would be brave enough to publish a paper listing the possible ramifications for each drug.

For Tymlos and Forteo, the medication also controls abdominal fat formation.

For Evenity, Sclerstin moderation may also play a role in plaque in coronary arteries.

Prolia decreases immunity.

Those are a few examples that come quickly to my mind ad I admit I may be in error on these

We NEED to be aware of what other functions could be affected to choose wisely. I have a bone cancer with my immunity already being depressed. I need a drug that does not depress that further or have a negative effect on my bone marrow.

Doctors and pharmaceutical companies must start treating us a whole entities and not just bones.

Enough with my rant.

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

kallettla | @kallettla | Jun 28 7:04am
In reply to @windyshores "@cat1203 I have to express some support for the comment by @juanitalinda and her doctor. The..." + (show)
@windyshores

@cat1203 I have to express some support for the comment by @juanitalinda and her doctor. The risk of fracture is much higher without meds. What you are describing is kind of a Russian Roulette approach. Some of us have lost!

I am not pro-med necessarily for osteopenia or even early osteoporosis but as someone with 7 spinal fractures I am on this forum to encourage others to try meds and avoid what I have been through- pain, disability and even (temporary so far) loss of independence.

Osteoporosis has no symptoms and we feel strong. But the risk is there and if bone density and/or quality declines enough, we can fracture while coughing.

Jump to this post

Truth. I knew someone many years ago who eventually couldn't ride in a car because a bump in the road would cause fracture. I feel fortunate to live in a time where we have meds to fight this battle, even though they are not perfect.

REPLY
rola | @rola | Jun 28 9:08am
In reply to @juanitalinda "My comment was made about my conversation with my doctor. And I realize that unfortunately, my..." + (show)
@juanitalinda

My comment was made about my conversation with my doctor. And I realize that unfortunately, my situation is very serious and not typical. (I certainly hope I am an outlier!).

But I think that it was pretty safe to safe that he KNOWS I will fracture without medical intervention.
I broke my femur in 5 pieces while bending over to pet my shepherd (not a small dog). Three months later I broke my rib while sleeping. Three months later I fractured a vertebra, standing still when I coughed.

As far as I can tell, the only way to stop a fracture is to get my 70 year old bones stronger as soon as possible.

Jump to this post

Very true, having fractured puts you in a very serious position and it would be negligible for your Dr to have come to any other conclusion. We are all individuals with individual needs. Thank you for sharing your story🧡.

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laoaca70 | @laoaca70 | Jun 29 2:21am

That’s why I don’t want to have any treatment for osteoporosis .

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janflute | @janflute | Jun 29 6:58am
In reply to @gently "Windyshores, Quoting Greenspan 2013 zoledronic acid binds most tightly to bone, followed by alendronate, ibandronate and..." + (show)
@gently

Windyshores,
Quoting Greenspan 2013 zoledronic acid binds most tightly to bone, followed by alendronate, ibandronate and risedronate.
https://immattersacp.org/archives/2013/06/bisphosphonates.htm
I couldn't find the original chart with duration of years in the bone on line because it had/still has a paywall. https://nyaspubs.onlinelibrary.wiley.com/doi/10.1196/annals.1346.041
I would have made copy, but where is it.

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My doctor has approved me to take Forteo for three years, with the third year starting in July. Then I will take Fosomax and Calcitonin. I have one remaining parathyroid gland and it is not working as well as it should. I am concerned about taking Forteo for three years because the black box warning was removed a fairly short time ago. Any thoughts?

REPLY
2 replies
windyshores | @windyshores | Jun 29 8:02am
In reply to @janflute "My doctor has approved me to take Forteo for three years, with the third year starting..." + (show)
@janflute

My doctor has approved me to take Forteo for three years, with the third year starting in July. Then I will take Fosomax and Calcitonin. I have one remaining parathyroid gland and it is not working as well as it should. I am concerned about taking Forteo for three years because the black box warning was removed a fairly short time ago. Any thoughts?

Jump to this post

@janflute not a single human has gotten cancer (sarcoma) from Forteo. So it has been deemed safe to extend treatment. The more pertinent question, I think, might be whether it is still working to grow bone (Tymlos may have stopped building bone for me before 18 months, according to bone markers) or whether it is at least maintaining bone density/quality. I continued on Tymlos for the full two years regardless of those bone marker tests, and both my doctors suggested that it might still be of benefit. I am not sure that there are enough studies on this as yet.

Some of us are doing the two years, then a bisphosphonate to "lock in" gains, and then hope to do a bone builder again later.

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1 reply
gently | @gently | Jun 29 8:31am
In reply to @janflute "My doctor has approved me to take Forteo for three years, with the third year starting..." + (show)
@janflute

My doctor has approved me to take Forteo for three years, with the third year starting in July. Then I will take Fosomax and Calcitonin. I have one remaining parathyroid gland and it is not working as well as it should. I am concerned about taking Forteo for three years because the black box warning was removed a fairly short time ago. Any thoughts?

Jump to this post

@janflute,
I hope to be taking Forteo for at least three years. I may have to see your doctor. When Forteo first came out the endocrinologist I see now told me that it was the the genetics of the rats that caused the cancer. The FDA's caution was good, but forced Lily to conduct ongoing studies. The removal came after 23 years of investigation. I trust the removal.
I also find it interesting that you will be taking Fosamax and Calcitonin. Calcitonin to lower serum calcium? that is in the normal range. Foxamax and Calcitonin work in the same way to reduce the osteoclastic activity which reduces serum calcium. Basically the bones aren't breaking down and releasing their calcium into the bloodstream. Some people on Fosamax experience low serum calcium. I'd probably want to wait the calcitonin until a blood draw after a month of Fosamax
Other than that I think you have luck with your medical provider. I like that they orderd abdominal imaging to find out "what else it could be." You don't want the radiation exposure, but would you consider a colonoscopy or pill scan.
And would you take a fourth year of Forteo if the third shows more gain?

REPLY
1 reply
janflute | @janflute | Jun 29 9:32am
In reply to @windyshores "@janflute not a single human has gotten cancer (sarcoma) from Forteo. So it has been deemed..." + (show)
@windyshores

@janflute not a single human has gotten cancer (sarcoma) from Forteo. So it has been deemed safe to extend treatment. The more pertinent question, I think, might be whether it is still working to grow bone (Tymlos may have stopped building bone for me before 18 months, according to bone markers) or whether it is at least maintaining bone density/quality. I continued on Tymlos for the full two years regardless of those bone marker tests, and both my doctors suggested that it might still be of benefit. I am not sure that there are enough studies on this as yet.

Some of us are doing the two years, then a bisphosphonate to "lock in" gains, and then hope to do a bone builder again later.

Jump to this post

Thank you, it is a tough decision for me-continue on Forteo or start calcitonon and Fosomax.

REPLY
janflute | @janflute | Jun 29 9:35am
In reply to @gently "@janflute, I hope to be taking Forteo for at least three years. I may have to..." + (show)
@gently

@janflute,
I hope to be taking Forteo for at least three years. I may have to see your doctor. When Forteo first came out the endocrinologist I see now told me that it was the the genetics of the rats that caused the cancer. The FDA's caution was good, but forced Lily to conduct ongoing studies. The removal came after 23 years of investigation. I trust the removal.
I also find it interesting that you will be taking Fosamax and Calcitonin. Calcitonin to lower serum calcium? that is in the normal range. Foxamax and Calcitonin work in the same way to reduce the osteoclastic activity which reduces serum calcium. Basically the bones aren't breaking down and releasing their calcium into the bloodstream. Some people on Fosamax experience low serum calcium. I'd probably want to wait the calcitonin until a blood draw after a month of Fosamax
Other than that I think you have luck with your medical provider. I like that they orderd abdominal imaging to find out "what else it could be." You don't want the radiation exposure, but would you consider a colonoscopy or pill scan.
And would you take a fourth year of Forteo if the third shows more gain?

Jump to this post

Thank you, I will consider the colonoscopy. The calcitonin is because my one failing parathyroid gland is not workin well, I think.

REPLY
1 reply
windyshores | @windyshores | Jun 29 10:47am
In reply to @janflute "Thank you, I will consider the colonoscopy. The calcitonin is because my one failing parathyroid gland..." + (show)
@janflute

Thank you, I will consider the colonoscopy. The calcitonin is because my one failing parathyroid gland is not workin well, I think.

Jump to this post

@janflute are you having bone marker tests to see if the Forteo continues to work?

@gently I am wondering how much of a break would be needed to restore effectiveness of Tymlos!

I tried calcitonin years ago when I could not tolerate anything else (before Tymlos was out). It is a mild approach. I am allergic to salmon and could not tolerate it! Noone seems to use it anymore....

REPLY
hopefulheart | @hopefulheart | Jun 29 12:48pm

I think a fracture is more concerning than the very rare side effects of Evinity

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