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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@awfultruth

Interesting info that I have not heard before. I need to ask some questions so I can understand all these points better.
Where did you get the 22% have serious reactions to Reclast? That's a scary high number.
Who are you quoting about how to infuse Reclast? Can you provide a link?
I've seen people on Facebook saying they get slow infusions and some adding adding a saline solution but I don't believe I ever see where that info originates.
I was already wondering about how to get a longer infusion if I go the Reclast route next. My doc said 20 min while your quote says an hour plus a sodium chloride solution plus Tylenol.
I wonder why so much Tylenol? Does Tylenol protect the kidneys from Reclast (while being chancy for the liver, imo, at the same time)?
On your Risidronate strategy, is there any study showing it holds on to your gains from an anabolic as well as Reclast? And is there any study showing Risidronate can be followed more successfully with an anabolic than Reclast or Fosamax? I get that it seems logical but I wonder if there is any research showing this.
Thanks for the new info

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awfultruth, there isn't an actual link. The gentleman dbKarpf is an endocrinologist at Stanford University. A check of his extensive research did not yield this longer method of reclast administration which he developed in his practice. If you want the longer infusion, you might copy his entry from my post. Your physician should then prescribe the medication with this delivery method. I suspect Karpf would respond to an email from your doctor, if your doctor doubts validity. It might be difficult for an infusion center to accomodate the method without advance notice. The 22% reduction are from Karpf as well as the reduction to 1%.
The tylenol does protect the kidneys, but no one with low creatinine clearance and/or acute kidney disease should take Reclast.
Tylenol is eliminated through the liver and produces toxic elements that can cause liver damage if sustained.
You may still have side effects from Reclast.

I think the studies show that Reclast or zolendronate will hold gains from an anabolic the very best and that risidronate holds gains the very least.
I haven't tried any of this.
My strategy is highly suspect and will fall down if you keep pulling out the cards. Do I know what I'm doing? No! I can't find any research and may be reporting fractures at a later date.

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@gently

Markers for bone building cells rise for one month after Evenity before falling back to baseline. Markers for acid secreting cells increase for up to twelve months. It makes sense to take Forteo or Tymlos beginning a month after Evenity, because these drugs raise the level of declining osteoblasts. I like six months of Forteo before a bisphosphonate.

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@gently I am finding conflicting info about Evenity after Tymlos. Interested in what you have found about the reverse! So little is known...

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@peace44

Thank for your encouraging reply. I’m 80 and have definitely decided not to take long term drugs. Two doctors trying for prolia and Reclast. I’m going to keep your information and follow a similar plan. I will check out Calciven Thanks for all the research and I am very appreciate.

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I'm 86 & had a pretty bad DEXA in October. My family doctor told me Reclast. I told him no. Not sure what I will do. Am seeing an endocrinologist at Univ of WI in April so will see what he/she says. I also have COPD & have just found out that what I take for that doesn't work for osteoporosis - makes it worse! Wonder if Dr McCormick still does consults..... Best of luck & good will to all!!

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@guinivere

I'm 86 & had a pretty bad DEXA in October. My family doctor told me Reclast. I told him no. Not sure what I will do. Am seeing an endocrinologist at Univ of WI in April so will see what he/she says. I also have COPD & have just found out that what I take for that doesn't work for osteoporosis - makes it worse! Wonder if Dr McCormick still does consults..... Best of luck & good will to all!!

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@guinivere McCormick still does consults but is very busy, actually inundated! Have you seen his book "Great Bones"? Also the YouTube video by Dr. Ben Leder on Combinations and Sequencing is helpful. Glad you are seeing an endocrinologist. PCP's seem to prescribe bisphoshonates first and for many of us, taking a bone builder like Tymlos, Forteo or Evenity is better first, then Reclast.

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@gently I cannot find anything online about Evenity after Forteo or Tymlos, except on this forum!

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@gently

janflute, the scariest effects of Reclast affect only (yikes) about 22%. There is a way to reduce the percentage to about 1% according to the well-known bone expert who conducted the reclast clinical trials.
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"I have prescribed a lot of Reclast (zoledronic acid), which to my knowledge is always administered in an infusion center, and not in a physician's office. My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the endodoc recnow 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.Best, endodoc." (Karpf)
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Reclast (zoledronate) adheres more strongly to the bone and persists in the bone for a longer period of time than Fosamax (alendronate). Risidronate has the least adherence and for the shortest duration. If my tentative plan fails, I will take risidronate to lessen the reductive impact of bisphonates on the second application of Forteo.
Osteoclasts and osteoblasts work best when coupled. Forteo, Tymlos too, establish a period of time when stripping the bone of fissures combines with laying down new bone in perfect balance--the bone anabolic window. An advantage of the balance is that osteoblasts are said to changed into osteocytes in the bone itself and they are the cells responsible for remodling.
My plan for myself is to follow the bone markers to maintain and then reestablish the anabolic window without sacrificing too many osteoclasts and without the bisphosphonates that prevent osteoblasts from penetrating the bone or from seating new bone.
It appears from my markers that after seven months I should have stopped Forteo. As it was at eight I stopped for one month and had the robust rise in osteoblasts and drop in osteoclasts with resumption. The markers may dictate the use of a bisphosphonate. I would then choose Actonel) risidtonate as it is the least "effective."

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Thank you so much for your reply. I will study it, there is so much information. I also love Forteo and wish that I could stay on it forever. Dr. Mannstadt at MA General wants me to have a one time Reclast infusion once I stop Forteo. I am worried about the side effects. I took Fosomax from 2003-2008 with no side effects. I am not familiar with Risitonate.

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@destinnana

I’m at Mayo now for my yearly physical and found out my bone mass in left hip had reduced rapidly within the past year, Mayo has been watching it through bone density test for several years. After my scan I was told I needed to start taking Fosomax and I was so concerned about side effects. I researched alternatives. After another conversation with my Executive Health program doctor he made an appt with the endocrinologist here at Mayo. It was a great idea and I am now at peace with what I need to do. She is allowing me one year to try and rebuild bone mass through lifting weights, more cardio, healthier eating and taking better care of myself. Also, I will start the supplement Algae Cal. I’m just not ready to settle on taking Fosomax. Do your research and if you have issues such as me, I encourage you to see an endocrinologist at Mayo. I am praying the life changes will make the different to me. I realize its all up to me.

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@destinnana what is your t score that your endocrinologist only suggested exercise, diet and supplements?

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@doglover1962

@destinnana what is your t score that your endocrinologist only suggested exercise, diet and supplements?

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She definitely didn’t suggest this. I asked, I begged to give me another year to try and change things. She did tell me she’d had a few patients that had used Algae Cal to try and boost bone mass. I am to start doing more weight bearing exercises and only with a trainer in the beginning to keep from injuring myself and start making better choices on food. She was very kind and helpful and listened to me. I have one year to change things or will need to start taking Fosomax.

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@destinnana

She definitely didn’t suggest this. I asked, I begged to give me another year to try and change things. She did tell me she’d had a few patients that had used Algae Cal to try and boost bone mass. I am to start doing more weight bearing exercises and only with a trainer in the beginning to keep from injuring myself and start making better choices on food. She was very kind and helpful and listened to me. I have one year to change things or will need to start taking Fosomax.

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My T score went from 2.0 in 2022 to 2.7 in 2024 in my left hip. Spine results went from 1.0 in 2022 to 1.6 in 2024. I am trying to learn what all this means. It’s a process. I was told should I have a fall, I could fracture something. I am taking this seriously and doing everything I can to change things without taking Fosomax. The possible side effects are very concerning to me.

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@destinnana

She definitely didn’t suggest this. I asked, I begged to give me another year to try and change things. She did tell me she’d had a few patients that had used Algae Cal to try and boost bone mass. I am to start doing more weight bearing exercises and only with a trainer in the beginning to keep from injuring myself and start making better choices on food. She was very kind and helpful and listened to me. I have one year to change things or will need to start taking Fosomax.

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Good luck! Let us all know how you do!

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