Undecided choice of drugs for Osteoporosis

Posted by peace44 @peace44, Oct 10, 2023

I am 80 years old women and have borderline osteoporosis which affects my entire body. My doctor wants me to take Prolia and the Rheumatologist wants me to take Reclast. I’m unhappy with both choices as the side effects are great and I do not tolerate new drugs well. I am very undecided and am considering doing not taking annty drugs for this condition. I have never had a fracture and I’m very active Any opinions or advice.

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I also have an osteoporosis diagnosis. My bone density testing showed osteopenia but I am treated as having Clinical Osteoporosis because of multiple falls with fractures. I have high risk and Frax scores. I chose the Reclast infusion and agree that it is a frightening decision. But, I have a broken knee and don’t know how it happened and have had a broken forearm, broken nose and broken fingers all from falls. To prevent a fall that is totally debilitating seems better addressed before it happens and Reclast was the recommendation by my endocrinologist. You will know when taking medication makes sense for you. Trust yourself and your health care provider.

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@hlp123

I have completed a year on Reclast after a year on Prolia.
What blood test are you referring to? I am trying to find out if I have been successful in locking in the gains from Prolia.
I would like to monitor my situation with blood tests instead of having to have another bone density test each year.
Thank you

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@hlp123 the CTX and P1NP blood tests. Make sure to do them fasting and always at the same time in the morning.

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@cbamarkham

I did the Reclast infusion almost 4 weeks ago. Had some headaches, flu like symptoms, fatigue, but the weird thing was a swelling of the inside of my ankles with an almost throbbing ache. The literature I was given at the infusion leaned away from ibuprofen so I was taking Tylenol daily to take the edge off of the pain. I finally got sick of the aching and contacted my doc who said to go ahead and use ibuprofen -24 hrs later I am seeing good progress. Wish I had talked to her sooner. I had also had a knee repair in July prior to the infusion in Oct, and my repaired knee swelled up about 2weeks after the infusion. I guess u never know how the infusion will affect you. Fingers crossed that I don’t have anymore issues and can finally get back to my daily walks for exercise-I’ve gained about 10 lbs thru this ordeal.

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I did Reclast, the side effects were few and lasted bout 8 hours. I had a low grade fever and the chills. Once the fever broke I was fine. It’s been 10 months, planning my second infusion in February. I did drink a lot of water and took Tylenol prior to my infusion plus the infusion was given gradually which I was told reduces the after effects.

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Why do people not all with Evenity which actually builds new bone? Why do they just prescribe the other kind of drugs that actually don't build new bone? Just curious.

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It is my understanding that bone building drugs must be followed by one of the others to retain bone.

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Great question 1956.
Our bodies are all different.
Sometimes an unknown cause of osteoporosis is operative. If you have parathyroid disease your body might produce too much parathyroid hormone. If you take a drug like (my favorite) Forteo, which works by increasing parathroid hormone, you already have too much and you'll probably get sick.

But I should have started at the beginning. Twenty years ago there were no anabolics--no drugs that actually build bones. All we had were the bisphosphonates (well, and salmon calcitonin which doesn't work). Bisphosphonates don't let your bones remodel. Normal processes of repair are stopped. Bone builds by holding older bone in place. The cracks that normally develop still developed. So you have this bone that is only stronger than no bone. But that is all you have to prevent fracture. And bisphosphonates prevented more fractures than they caused.

In 2002 Forteo was approved by the FDA. It had a black box warning about the possibility that it could cause bone cancer. Mandated after market studies completed just this year removed that concern (and the black box). Tymlos followed Forteo with the same warning also removed.
Prolia was next and widely hailed. Years have proven that it can be a dangerous bone breaking drug if not followed by other drugs.

2019 Evenity. The hazard warning with Evenity is cardiac. Some dismiss the warning and prescribe the drug In the years ahead, patient health will inform us whether the drug is too dangerous to take or as safe as Forteo.

Prescribers are largely influenced by what has happened in their practices. If they have a patient who was harmed by Prolia, they won't prescribe Prolia. And, they are more reluctant to trust Evenity.
Sometimes cost and insurance coverage controls the prescription.
Interesting question, complicated answer.

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@windyshores

@hlp123 the CTX and P1NP blood tests. Make sure to do them fasting and always at the same time in the morning.

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I agree with the CTX and P1NP blood test that will let you know where you are at this point in time . A 24 hour urine calcium is also important.

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@violetsteptoe

My endocrinologist days I can’t stop my Prolia shots after taking 4 doses in the last two years. I hear it can affect dental work (i.e. dental implants). Am I able to use something else. I took Fosamax for 5 yrs for osteoporosis but it did nothing. She said Prolia had helped me. What’s the answer, please?

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I had severe constant leg cramps from Prolia. I stopped it. I’ve taken all the bone builders & nothing helped.
I’m done with medications. I walk & carrying cat litter boxes is my weight bearing exercises. All meds have side effects.

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@gently

Great question 1956.
Our bodies are all different.
Sometimes an unknown cause of osteoporosis is operative. If you have parathyroid disease your body might produce too much parathyroid hormone. If you take a drug like (my favorite) Forteo, which works by increasing parathroid hormone, you already have too much and you'll probably get sick.

But I should have started at the beginning. Twenty years ago there were no anabolics--no drugs that actually build bones. All we had were the bisphosphonates (well, and salmon calcitonin which doesn't work). Bisphosphonates don't let your bones remodel. Normal processes of repair are stopped. Bone builds by holding older bone in place. The cracks that normally develop still developed. So you have this bone that is only stronger than no bone. But that is all you have to prevent fracture. And bisphosphonates prevented more fractures than they caused.

In 2002 Forteo was approved by the FDA. It had a black box warning about the possibility that it could cause bone cancer. Mandated after market studies completed just this year removed that concern (and the black box). Tymlos followed Forteo with the same warning also removed.
Prolia was next and widely hailed. Years have proven that it can be a dangerous bone breaking drug if not followed by other drugs.

2019 Evenity. The hazard warning with Evenity is cardiac. Some dismiss the warning and prescribe the drug In the years ahead, patient health will inform us whether the drug is too dangerous to take or as safe as Forteo.

Prescribers are largely influenced by what has happened in their practices. If they have a patient who was harmed by Prolia, they won't prescribe Prolia. And, they are more reluctant to trust Evenity.
Sometimes cost and insurance coverage controls the prescription.
Interesting question, complicated answer.

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Thank you for your response. Yes, we are all different, and I've noticed throughout my life a lot of doctors do not consider this. I think our medical healthcare is scary. I'm a very small person (child size) and because I am an adult, most doctors would give me medication adult milligram size which many times have had adverse effect. I've noticed any new medications the cost is usually in the thousands in today's world. I remember taking Acutane when it was an experimental drug at the time and I was able to pay out of pocket. Since 2011, I've noticed these medications all very expensive and the quality of care went way downhill. Health Insurance is in control of the health care and they don't consider the individual.

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@windyshores

@hlp123 the CTX and P1NP blood tests. Make sure to do them fasting and always at the same time in the morning.

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Thank you !!!
I really appreciate this information. I have so many doctors and not one of them, including my endocrinologist, has every done these tests !!!!

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