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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@1956slk

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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We have to be careful with how we vote. With corporations having power over political campaigns, healthcare has become a financial game that the public is not winning. 2010 https://www.history.com/topics/united-states-constitution/citizens-united
A nation's healthcare is a massive undertaking.
The cost of new medications is partially unavoidable; research is expensive and approval in the US requires extensive clinical trials to protect us. Profit margins are uncontrollable when pharmaceutical companies elect those whose job is to protect public interest.
Illness is scary on its own, though. We have to be aggressive in our care and in the care of our loved ones. As with all professions there is disparity in the quality of medical care. There are more wonderful doctors than those who provide a low quality of care. We just have to find them.

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@peace44

That’s for great information. Forteo sounds good but I have no insurance that covers Forteo and it’s thousands per month. I need a drug which is covered under Part B of Medicare and that’s Prolia and Reclast. I don’t care for either. I currently looking for a drug that’s natural. I only have one prescription for High Blood Pressure so I’m unaccustomed to an ongoing drugs.

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My insurance paid for Tymlos but not forteo.
Ask about Tymlos which is similar to Forteo.

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@gently

The endocrinologist I see would advise against medication for borderline osteoporosis. I, on the other hand (with no particular knowlege of anything) would be alarmed at the suggestion of Prolia. And would advise against reclast. But would suggest you look at Forteo.
It is just that if you fracture your life will change in ways you can't imagine. I've read that more fractures occur in osteopenic women than in osteoporotic women.
Trabecular bone structure is poorly depicted on dxa. Have you had a TBS. That is where we lose bone the fastest because there is more surface area to this type of bone.
Some people never fracture. I'm not taking the risk and have been on Forteo since April without negative effect.
70% of women 80 or older have osteoporosis. Congratualtions.

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gently I took tymlos for 18 months and refused to take Prolia or enmity after.
I am considering either Reclast or enmity but prefer not to be on any meds due to side effects.
Do you recommend your endocrinologist?
Im looking for an osteoporosis specialist.
Any advice I appreciate

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Gigx2, I do have a wondeful endocrinologist Dr. Hawkins, he's in Fresno CA. He only treats osteoporosis patients and hails from Duke. He is recommending Reclast for me after I finish two years of Forteo. I guess we have to take something to maintain our anabolic gains. I do think you are better off with an endocrinologist that specializes in osteoporosis.
I have some advice from a doctor at Stanford about how to take Reclast to diminish side effects. He ran the clinical trials on Reclast. So this passage which I quote is meticulous. Don't let the complexity stir you against the drug. You might print the instructions and give them to the prescribing administering medical personnel, if you decide on Reclast. He also prefers Reclast after the full Forteo or Tymlos 18 months.
I won't take Evenity or Prolia. Although, if there were nothing else. . . I'm no so happy about the mechanism of action of the bisphosphonates. And am trying to figure a way without them.

"Have the infusion nurse dilute the 5mg in 100m LD5W into 500mLof NS so that the now 600mL infuses over 60 minutes.
Making the N-BP liss concentrated and infusing it more slowly substantially improves the renal safety based on data.
Administer 650mg of acetaminophen at the same time of the infusion and instruct the patient to take the same dose with dinner and at bedtime the day of the infusion, and with all three meals and at bedtime the day after the infusion, and a final dose with breakfast the 2nd morning after the infusion. This reduces the risk of a symptomatic acute phase reaction (APR) from about 22% to < 1%.
The 3rd thing I do is repeat the BTM (bone turnover markers) U, NTx and serum BSAP 4-6 weeks after the infusion to assess the maximal effect of bone turnover rate. This serves as a comparison when I repeat BTMs 12 months after the infusion. In my extensive 32 years of experience with IV bisphosphonates the average woman only needs a second infusion after an average of 24 months."
best wishes

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I wish there was some way we could bookmark this post for quick future reference.

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@momcatvw

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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I loved your comment.
I’m 74 and have osteoporosis, and most recently have compression fractures.
My Ortho said you need to be on osteoporosis meds.
The choices out there are
scary.
Wish I could find one I’d be comfortable with.
Good luck and good health to you.

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@pinetreestate

I loved your comment.
I’m 74 and have osteoporosis, and most recently have compression fractures.
My Ortho said you need to be on osteoporosis meds.
The choices out there are
scary.
Wish I could find one I’d be comfortable with.
Good luck and good health to you.

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pinetreestate,
I can recommend Forteo. If you have side effects you can immediately stop the drug. I haven't had any adverse effects. And the bone markers suggest a robust response to the medication.
best wishes with your choice

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@normahorn

I wish there was some way we could bookmark this post for quick future reference.

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If Reclast is in your future, you might print the instructions and keep the page with your dxa records. Whoever administers the drug needs the instructions in advance. And it is better if your prescribing doctor signs and send an order for this administration.These instructions are a little extra work. Remember and insist on how worth the extra effort you are.

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@gently

Gigx2, I do have a wondeful endocrinologist Dr. Hawkins, he's in Fresno CA. He only treats osteoporosis patients and hails from Duke. He is recommending Reclast for me after I finish two years of Forteo. I guess we have to take something to maintain our anabolic gains. I do think you are better off with an endocrinologist that specializes in osteoporosis.
I have some advice from a doctor at Stanford about how to take Reclast to diminish side effects. He ran the clinical trials on Reclast. So this passage which I quote is meticulous. Don't let the complexity stir you against the drug. You might print the instructions and give them to the prescribing administering medical personnel, if you decide on Reclast. He also prefers Reclast after the full Forteo or Tymlos 18 months.
I won't take Evenity or Prolia. Although, if there were nothing else. . . I'm no so happy about the mechanism of action of the bisphosphonates. And am trying to figure a way without them.

"Have the infusion nurse dilute the 5mg in 100m LD5W into 500mLof NS so that the now 600mL infuses over 60 minutes.
Making the N-BP liss concentrated and infusing it more slowly substantially improves the renal safety based on data.
Administer 650mg of acetaminophen at the same time of the infusion and instruct the patient to take the same dose with dinner and at bedtime the day of the infusion, and with all three meals and at bedtime the day after the infusion, and a final dose with breakfast the 2nd morning after the infusion. This reduces the risk of a symptomatic acute phase reaction (APR) from about 22% to < 1%.
The 3rd thing I do is repeat the BTM (bone turnover markers) U, NTx and serum BSAP 4-6 weeks after the infusion to assess the maximal effect of bone turnover rate. This serves as a comparison when I repeat BTMs 12 months after the infusion. In my extensive 32 years of experience with IV bisphosphonates the average woman only needs a second infusion after an average of 24 months."
best wishes

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Gently,

Thank you so much for sharing this.

I’ll be starting my course of Forteo soon.

I asked my doctor what had to be taken when I finished two years of Forteo her response was we usually have this discussion at the end of the two years. Can you imagine!!

I really appreciate the fact that you have taken the time to describe exactly what you decided to do.

Thank you.

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0611945cc
Your doctor might be doing the best she can.
Luckily, you know that it isn't good enough.
Try to get an order for bone markers P1NP and CTX before you start Forteo. In three months you should repeat them and you'll have a good idea if Forteo is working for you. Your doctor will likely be reluctant to order them. My sense of her response is that she doesn't know. But she almost certainly knows all kinds of other valuable things about a multitude of diseases. And we have to credit her for prescribing the very best drug for osteoporosis.
I've really been having a great time with this pursuit of the perfect drug, perfect dose and perfect timing. I so enjoy reading the medical literature and chasing little threads as well as combing through the doctors. I tend to share too many obscure (but very exciting) details. And I'm really quiet in person.
So I appreciate your note and am happy to say more if there is anything else you wonder or worry about.
Terry.

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