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.

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

I am so happy to have found this forum. I am struggling with the available treatment options for osteoporosis and appreciate the shared experiences of women who are in this same predicament.
I am 74 years old, and my recent Scan for lumbar spine T score is -2.7, left hip T score -2.6, left femoral neck -3.3. That, along with a recently diagnosed sacral spine fracture and degenerative disc disease has left me anxious about how to regain and maintain bone strength. My osteoporosis was diagnosed at least 10 years ago, but after a brief attempt at Fosomax and several years on Calcitonin I decided to go for the diet and exercise route. I am now at the point where I've reconciled the need to start medication but am having difficulty deciding between my doctor's suggestion of weekly Fosomax or the annual Reclast infusion. My body generally has difficulty with medications, and I'm reluctant to start any of the available treatment options. I don't think my doctor is the best source of info, and it's interesting to read that many of you see rheumatologists, which I may ask for referral to.

REPLY
@kar50

I am so happy to have found this forum. I am struggling with the available treatment options for osteoporosis and appreciate the shared experiences of women who are in this same predicament.
I am 74 years old, and my recent Scan for lumbar spine T score is -2.7, left hip T score -2.6, left femoral neck -3.3. That, along with a recently diagnosed sacral spine fracture and degenerative disc disease has left me anxious about how to regain and maintain bone strength. My osteoporosis was diagnosed at least 10 years ago, but after a brief attempt at Fosomax and several years on Calcitonin I decided to go for the diet and exercise route. I am now at the point where I've reconciled the need to start medication but am having difficulty deciding between my doctor's suggestion of weekly Fosomax or the annual Reclast infusion. My body generally has difficulty with medications, and I'm reluctant to start any of the available treatment options. I don't think my doctor is the best source of info, and it's interesting to read that many of you see rheumatologists, which I may ask for referral to.

Jump to this post

kar50,
hi, welcome to the party.
There aren't a lot of medications to choose from. There are two basic types antiresorptives which stop your bones from growing adapting or repairing themselves. And anabolics that encourage the growth of bone by repairing fissures and changing alignment in accordance with your activities.
Both of the medications you have been offered are antiresorptive. Both Fosamax and Reclast are part of the larger group of bisphosphonates including alendronate, risidronate and others.
The anabolics are Tymlos and Forteo. They build a stronger, more resilient bone. I would guess that you haven't seen a bone specialist because the current thinking is that the anabolics work better if you take them before you take the antiresorptives.
There are two other drugs coursing osteoporotic bodies these days. Prolia which is an antiresorptive and Evenity which seems to be a combination--anabolic for the first three months and antiresorptive after.
I'm in the anabolic court, with the opinion that they give you better bone and faster
protection.
All of these medications have potential side effects. I'm taking Forteo for a year and a half now without any side effects. One nice advantage of Forteo and Tymlos is that if you have side effects the drug clears the system within 24 hours and you can quit the drug without suffering for an extended period of time.
Some of us see rheumatologists some see endocrinologists. I've only seen endocrinologists--lots of them. You might look for someone with an interest in osteoporosis because it is difficult to keep up with literature on so many diseases.
I have little experience but there are many wonderful characters here and a vast amount of practical knowlege.
A plus is that the unspoken rule is respect for each others opinions and the ultimate respect for what will be a very personal decision.
We're happy you found us, too.

REPLY
@guinivere

I would like to take Forteo. Or Tymlos, but I for two reasons I can't rught now . First my financial aid app hasn't been acted on yet & I will need that with Tymlos. Not sure about Forteo. Either way the application process can take a long time & I am only about two weeks into it & I am scheduled to start Prolia next week. And meanwhile I have been set up with an appt for Prolia! Not happy.
Need to point out that my bone density test that revealed my osteoporosis was last October & I am still not on anythin except calcum & vitamin D! But I haven"t fallen at all since I did a year ago May & fractured a wrist. So part of me thinks, my god, get ON something & the other part says, you've made it this far. Stick it out until the insurance kicks in & then get on the med I want. Probably Forteo as it's cheaper than Tymlos, I think.

I REALLY coiuld use some advice!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jump to this post

I would not do Prolia...my endocrine dr had said once you start it, if you stop, your bone loss will be worse. I don't like any drugs that will set you back worse than you started and cause dependence. Due to connective tissue disorder I have osteoporosis already in early 50s, and the thought of being on some bone drug the rest of my life is depressing and daunting. It seems like whatever you take, then you have to keep taking something forever. I wonder if that is true. I've tried so many osteoporosis drugs and failed. My body is so sensitive to drugs, and I think they need more dosing options for women. We are not all the same body size, not the same. They need to consider the effects of being on hormone replacement also in conjunction with these drugs...I doubt this is studied. All that being said, hoping one day soon there is a bone building drug like forteo i might be able to tolerate. Every time i try an anti resorptive like fosamax or similar I get horrible body pains, jaw pain, teeth pain. I got awful headaches on tymlos, and insomnia/jaw pain trying Evenity.

REPLY
@tkdesign

I would not do Prolia...my endocrine dr had said once you start it, if you stop, your bone loss will be worse. I don't like any drugs that will set you back worse than you started and cause dependence. Due to connective tissue disorder I have osteoporosis already in early 50s, and the thought of being on some bone drug the rest of my life is depressing and daunting. It seems like whatever you take, then you have to keep taking something forever. I wonder if that is true. I've tried so many osteoporosis drugs and failed. My body is so sensitive to drugs, and I think they need more dosing options for women. We are not all the same body size, not the same. They need to consider the effects of being on hormone replacement also in conjunction with these drugs...I doubt this is studied. All that being said, hoping one day soon there is a bone building drug like forteo i might be able to tolerate. Every time i try an anti resorptive like fosamax or similar I get horrible body pains, jaw pain, teeth pain. I got awful headaches on tymlos, and insomnia/jaw pain trying Evenity.

Jump to this post

@tkdesign some of us use Tymlos at lower doses to start. In fact, I had excellent gains and never took the full dose. The injection pen has adjustable dosing and since I was sensitive to full dose, I started at 25% dose and moved up.

I also did one shot of Evenity vs two a couple of times, and my doctor is giving me 20% doses of Reclast to start (due to kidneys and afib). Find a doctor who will work with your sensitivities.

Many people seem to tolerate Evenity well as well.

REPLY
@gently

kar50,
hi, welcome to the party.
There aren't a lot of medications to choose from. There are two basic types antiresorptives which stop your bones from growing adapting or repairing themselves. And anabolics that encourage the growth of bone by repairing fissures and changing alignment in accordance with your activities.
Both of the medications you have been offered are antiresorptive. Both Fosamax and Reclast are part of the larger group of bisphosphonates including alendronate, risidronate and others.
The anabolics are Tymlos and Forteo. They build a stronger, more resilient bone. I would guess that you haven't seen a bone specialist because the current thinking is that the anabolics work better if you take them before you take the antiresorptives.
There are two other drugs coursing osteoporotic bodies these days. Prolia which is an antiresorptive and Evenity which seems to be a combination--anabolic for the first three months and antiresorptive after.
I'm in the anabolic court, with the opinion that they give you better bone and faster
protection.
All of these medications have potential side effects. I'm taking Forteo for a year and a half now without any side effects. One nice advantage of Forteo and Tymlos is that if you have side effects the drug clears the system within 24 hours and you can quit the drug without suffering for an extended period of time.
Some of us see rheumatologists some see endocrinologists. I've only seen endocrinologists--lots of them. You might look for someone with an interest in osteoporosis because it is difficult to keep up with literature on so many diseases.
I have little experience but there are many wonderful characters here and a vast amount of practical knowlege.
A plus is that the unspoken rule is respect for each others opinions and the ultimate respect for what will be a very personal decision.
We're happy you found us, too.

Jump to this post

Thank you for this succinct, helpful information.
My anxiety level has decreased dramatically finding people like you who have much to share.

REPLY
@06111945cc

I gather you don’t want to take any of the osteoporosis drugs.

I chose that path for three years. In the end I had seven fractured vertebrae.

I’m taking Forteo . I have lots of different side effects.

My bones have quit hurting.

Bone pain was worse than muscle pains I get from the medication.

So, I think I’m better off than I was before.

Been on Forteo for six months.

Jump to this post

Helpful information. I also opted to not use the osteoporosis drugs and now have a lumbar fracture that is healing, but was extremely painful for 2 months and my T scores are not good. I found this forum as I'm now reconciled to starting a medication, not sure which one yet so connecting to this is the best source.

REPLY
@windyshores

@tkdesign some of us use Tymlos at lower doses to start. In fact, I had excellent gains and never took the full dose. The injection pen has adjustable dosing and since I was sensitive to full dose, I started at 25% dose and moved up.

I also did one shot of Evenity vs two a couple of times, and my doctor is giving me 20% doses of Reclast to start (due to kidneys and afib). Find a doctor who will work with your sensitivities.

Many people seem to tolerate Evenity well as well.

Jump to this post

You said: my doctor is giving me 20% doses of Reclast.

Do you pay out of pocket for the 20% RECLAST infusion?

REPLY

kar50, I neglected to mention that bisphosphonates have prevented far more fractures than they have caused.
They work (they do work) initially by preventing the production of osteoclasts and all through treatment and for years after by preventing osteoclasts from attaching to bone.
It really was an oversight and not a persuasive tactic.
Others will follow (I hope) with their perfect experiences with antiresorptives.
Anxiety can ebb and flow but osteoporosis is fascinating. I'm capable of providing the most irritatingly useless information. Luckily there are others, so keep the questions coming.
https://www.youtube.com/watch?v=Cd0YT-OV97c
my favorite video because one of the reseachers has recorded an osteoclast live

REPLY
@kar50

Helpful information. I also opted to not use the osteoporosis drugs and now have a lumbar fracture that is healing, but was extremely painful for 2 months and my T scores are not good. I found this forum as I'm now reconciled to starting a medication, not sure which one yet so connecting to this is the best source.

Jump to this post

The book Great Bones by McCormick will help you.

REPLY
@gently

kar50, I neglected to mention that bisphosphonates have prevented far more fractures than they have caused.
They work (they do work) initially by preventing the production of osteoclasts and all through treatment and for years after by preventing osteoclasts from attaching to bone.
It really was an oversight and not a persuasive tactic.
Others will follow (I hope) with their perfect experiences with antiresorptives.
Anxiety can ebb and flow but osteoporosis is fascinating. I'm capable of providing the most irritatingly useless information. Luckily there are others, so keep the questions coming.
https://www.youtube.com/watch?v=Cd0YT-OV97c
my favorite video because one of the reseachers has recorded an osteoclast live

Jump to this post

@gently you contribute so much on this forum and none of your info has been"useless"! All your posts are knowledgeable and helpful. I too have gone back over posts and done some reading and try to be more positive about anti-resorptives, at least for less serious osteoporosis w/out fractures.

@06111945cc I don't pay out of pocket for my Reclast infusions. I want to emphasize that most people do fine with Reclast and my "test doses" are because my endo is concerned about other conditions. I have to do infusions more frequently to get adequate coverage to "lock in gains" from other meds.

REPLY
Please sign in or register to post a reply.