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.

windyshores | @windyshores | Jun 26 7:24pm

In reply to @cmhackett52 "They're probably under pressure from the pharmaceutical companies to push the drugs!" + (show)

@cmhackett my doctors are not under pressure nor would they respond to pressure by pharmaceutical companies. They don't use Prolia and didn't want me to do Evenity after Tymlos. Side effects seem to more in the realm of pharmacists.

cmhackett52 | @cmhackett52 | Jun 27 1:40am

In reply to @windyshores "@cmhackett my doctors are not under pressure nor would they respond to pressure by pharmaceutical companies...." + (show)

What did your doctors prescribe for you?

cat1203 | @cat1203 | Jun 27 6:31am

In reply to @windyshores "@cmhackett my doctors are not under pressure nor would they respond to pressure by pharmaceutical companies...." + (show)

@windyshores, why didn't they want you to do Evenity after Tymlos?

cat1203 | @cat1203 | Jun 27 6:37am

In reply to @juanitalinda "When I asked my doctor about side effects of Evenity he said he couldn't really answer..." + (show)

I find that kind of comment to be fear-mongering. It is NOT knowable that not taking a bone med will result in fracture and long-lasting pain. Some (many?) osteoporotic people don't take them and never fracture. Some people fracture when they only have osteopenia. Some people taking the drugs fracture anyway, sometimes multiple times. I am not anti-med, I'm currently taking alendronate and considering my next drug. But I would challenge any doctor who made such a comment to me.

njhornung | @normahorn | Jun 27 8:45am

Thank you for your comment. A month ago, I was weeding in a large flower bed that had volunteer wild onions. These were over 2' tall and located where they could not be dug out. Therefore, playing tug of war was required. I won about half the time but without fracturing. I would not recommend this activity but I am not living my life as the fear mongers would have me do. I am not on any OP medication as it seems all could aggravate other health issues.

gently | @gently | Jun 27 9:05am

In reply to @normahorn "Maybe instead of using the term "side effects" to describe what I am referring to, a..." + (show)

I don't see how you can touch the osteoclasts without affecting immunity.
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2019.01408/full
Co-effects really need a separate term from side effects or adverse events. I suspect that when we have a noticeable "side effect" it is just the surface warning of a more damaging "co-effect. " Verbal distinctions with physical connection

juanitalinda | @juanitalinda | Jun 27 9:10am

In reply to @cat1203 "I find that kind of comment to be fear-mongering. It is NOT knowable that not taking..." + (show)

@cat1203

A little bit of context is probably necessary to justify my doctor's comment. I had already suffered 3 fragility fractures in the past year ... and the DEXAs indicated osteopenia, not even osteoporosis.

Given my personal risks, I wholeheartedly agreed with him.

We all have different health histories ...

windyshores | @windyshores | Jun 27 12:58pm

In reply to @cmhackett52 "What did your doctors prescribe for you?" + (show)

@cmhackett52 my doctors let me decide after we have a good discussion, then I get back to them with my choice. I did Tymlos then 4 months Evenity now low dose Reclast. They are very considerate of my other health issues and various sensitivities.

windyshores | @windyshores | Jun 27 1:03pm

In reply to @cat1203 "I find that kind of comment to be fear-mongering. It is NOT knowable that not taking..." + (show)

@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.

windyshores | @windyshores | Jun 27 1:07pm

In reply to @cat1203 "@windyshores, why didn't they want you to do Evenity after Tymlos?" + (show)

@cat1203 Evenity is newish and both my docs said there was not yet enough data on this sequence. My doctor wrote me "thank you for your persistence" (which I found to be humor) and let me try. Both my endos told me I was the only patient in their practice doing this and that I was a one woman protocol.