1. < Osteoporosis & Bone Health

What would you do? Medication.

Posted by babs10 @babs10, Feb 12 7:18pm

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

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babs10 | @babs10 | Feb 20 8:24pm
In reply to @sallyj2 "Yes, that's what I was referring to. One of my my doctors, the endo, said it's..." + (show)
@sallyj2

Yes, that's what I was referring to. One of my my doctors, the endo, said it's only slightly helpful. If someone has a normal DEXA, but fractures, it doesn't matter, they still have a problem. He said if someone had a marginal DEXA, that the TBS might show that their problem was actually worse and give them the opportunity to start meds earlier. That's a big deal to me. But, he tries to treat early anyway. Also, I would like a baseline, especially for hips and wrists before starting bone meds which are frequently more beneficial to spine.

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I'm wondering if it could show that the bone is actually of good quality as a means by which to delay medication.

???

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1 reply
sallyj2 | @sallyj2 | Feb 20 8:34pm
In reply to @babs10 "I'm wondering if it could show that the bone is actually of good quality as a..." + (show)
@babs10

I'm wondering if it could show that the bone is actually of good quality as a means by which to delay medication.

???

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Me too!!!

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debsinwa | @debsinwa | Feb 21 5:24pm
In reply to @semurrey "Good luck with Forteo! I'm 58 and only one year into Letrozole (will be on for..." + (show)
@semurrey

Good luck with Forteo! I'm 58 and only one year into Letrozole (will be on for 10yrs) was pushed into osteoporosis and doc is recommending Fosamax or Reclast infusion. I'm petrified of side effects and already have jaw pain due to a dislocated TMJ disc. I may need root canal/crown due to old fillings. Just wondering how long I can hold off. How are you feeling on Forteo and may I ask why you started with Forteo? Thanks..xo

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Sue Ellen, I am doing pretty well on the Forteo. I started the end of October 2023. I have had a little tired but not horrible. They switched me to the generic in January and now my blood pressure has increased and I notice that the injections sting more then the brand name so I am going back to the brand name.
My Endocrinologist recommended it and I did some online research and decided that would be the best option. I follow Dr Doug Lucas online and watch his You Tube videos and he said they try hard to avoid drugs in their office but sometimes their patients require it and Forteo is the only drug they use. It has been around a long time and is one of the best for spine building. I also read Dr. Keith McCormick's Great Bones book. I held off for a few years because I wanted to try "natural" but that didn't work. I also had to hold off for nearly a year for some dental work too.
Talk it over with your dentist but I would think you might want to get those procedures done before you start. My dentist said they are getting better at finding ways to deal with people on these drugs but I wanted to wait but then I fractured again and it's so painful and takes months to heal. I hope you get good medical advice and can find a solution that works for you.

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4 replies
windyshores | @windyshores | Feb 21 8:35pm
In reply to @debsinwa "Sue Ellen, I am doing pretty well on the Forteo. I started the end of October..." + (show)
@debsinwa

Sue Ellen, I am doing pretty well on the Forteo. I started the end of October 2023. I have had a little tired but not horrible. They switched me to the generic in January and now my blood pressure has increased and I notice that the injections sting more then the brand name so I am going back to the brand name.
My Endocrinologist recommended it and I did some online research and decided that would be the best option. I follow Dr Doug Lucas online and watch his You Tube videos and he said they try hard to avoid drugs in their office but sometimes their patients require it and Forteo is the only drug they use. It has been around a long time and is one of the best for spine building. I also read Dr. Keith McCormick's Great Bones book. I held off for a few years because I wanted to try "natural" but that didn't work. I also had to hold off for nearly a year for some dental work too.
Talk it over with your dentist but I would think you might want to get those procedures done before you start. My dentist said they are getting better at finding ways to deal with people on these drugs but I wanted to wait but then I fractured again and it's so painful and takes months to heal. I hope you get good medical advice and can find a solution that works for you.

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There is no need to delay dental work before Forteo or Tymlos. Dentists sometimes lump all osteoporosis drugs together but these two do not cause any dental or jaw issues.

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1 reply
debsinwa | @debsinwa | Feb 21 8:46pm
In reply to @windyshores "There is no need to delay dental work before Forteo or Tymlos. Dentists sometimes lump all..." + (show)
@windyshores

There is no need to delay dental work before Forteo or Tymlos. Dentists sometimes lump all osteoporosis drugs together but these two do not cause any dental or jaw issues.

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Thank you for clarifying that 😊

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Sue Ellen Murrey | @semurrey | Feb 22 7:16am
In reply to @debsinwa "Sue Ellen, I am doing pretty well on the Forteo. I started the end of October..." + (show)
@debsinwa

Sue Ellen, I am doing pretty well on the Forteo. I started the end of October 2023. I have had a little tired but not horrible. They switched me to the generic in January and now my blood pressure has increased and I notice that the injections sting more then the brand name so I am going back to the brand name.
My Endocrinologist recommended it and I did some online research and decided that would be the best option. I follow Dr Doug Lucas online and watch his You Tube videos and he said they try hard to avoid drugs in their office but sometimes their patients require it and Forteo is the only drug they use. It has been around a long time and is one of the best for spine building. I also read Dr. Keith McCormick's Great Bones book. I held off for a few years because I wanted to try "natural" but that didn't work. I also had to hold off for nearly a year for some dental work too.
Talk it over with your dentist but I would think you might want to get those procedures done before you start. My dentist said they are getting better at finding ways to deal with people on these drugs but I wanted to wait but then I fractured again and it's so painful and takes months to heal. I hope you get good medical advice and can find a solution that works for you.

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Thanks for weighing in! My endocrinologist said root canals, crowns would not be an issue with bisphosphates but would be more concerned if perhaps needed an implant or extraction. Why Forteo or Tymlos as my doc suggested starting with Forteo or infusion, Reclast. I am so anxious about going on these bisphosphates. I am sorry to hear about your fractures - was it a trauma or just random movement? oxoxo

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1 reply
windyshores | @windyshores | Feb 22 7:35am
In reply to @semurrey "Thanks for weighing in! My endocrinologist said root canals, crowns would not be an issue with..." + (show)
@semurrey

Thanks for weighing in! My endocrinologist said root canals, crowns would not be an issue with bisphosphates but would be more concerned if perhaps needed an implant or extraction. Why Forteo or Tymlos as my doc suggested starting with Forteo or infusion, Reclast. I am so anxious about going on these bisphosphates. I am sorry to hear about your fractures - was it a trauma or just random movement? oxoxo

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@semurrey every doc, book and video tells us to do a bone builder like Forteo, Tymlos or Evenity before a bisphosphonate or Prolia. In facct bisphosphonates may reduce the effectiveness of bone builder if used in the future. Docs tell me it is better to build a foundation of quality bone with bone builders and then "lock in" gains with Reclast or Fosamax.

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1 reply
Sue Ellen Murrey | @semurrey | Feb 22 7:45am
In reply to @windyshores "@semurrey every doc, book and video tells us to do a bone builder like Forteo, Tymlos..." + (show)
@windyshores

@semurrey every doc, book and video tells us to do a bone builder like Forteo, Tymlos or Evenity before a bisphosphonate or Prolia. In facct bisphosphonates may reduce the effectiveness of bone builder if used in the future. Docs tell me it is better to build a foundation of quality bone with bone builders and then "lock in" gains with Reclast or Fosamax.

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SO helpful and I really appreciate your feedback! I will convey to my endocrinologist and circle back. Side effects of Forteo etc look even more rough though than with Fosamax 🙁

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1 reply
windyshores | @windyshores | Feb 22 7:52am
In reply to @semurrey "SO helpful and I really appreciate your feedback! I will convey to my endocrinologist and circle..." + (show)
@semurrey

SO helpful and I really appreciate your feedback! I will convey to my endocrinologist and circle back. Side effects of Forteo etc look even more rough though than with Fosamax 🙁

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As I have written here, side effects with Tymlos were minimized by ramping up the dose and even doing 6 or 7 out of 8 "clicks" on the pen. Also side effects, for me, eased up considerably as my body got used to it.

Many tolerate Forteo really well. The thing is, side effects of these two drugs are short (2 hours or so for me) and the medicine doesn't hang around. Reclast stays in the body a really long time.

You may be surprised and do well on Forteo. If not, insurance might cover Tymlos with your doctor documenting a "failure" with Forteo.

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