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.

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

babs10 | @babs10 | Feb 22 12:20pm
In reply to @windyshores "As I have written here, side effects with Tymlos were minimized by ramping up the dose..." + (show)
@windyshores

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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Wait, side effects with Tymlos were minimized by ramping up the dose? That seems contralogical. Why would that be? Thanks.

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1 reply
windyshores | @windyshores | Feb 22 2:56pm
In reply to @babs10 "Wait, side effects with Tymlos were minimized by ramping up the dose? That seems contralogical. Why..." + (show)
@babs10

Wait, side effects with Tymlos were minimized by ramping up the dose? That seems contralogical. Why would that be? Thanks.

Jump to this post

Sorry ramping up by starting low and moving the dose up slowly.

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1 reply
mlwh | @mlwh | Feb 22 3:30pm
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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Thank you for the Dr. Doug Lucas suggestion!!!!

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babs10 | @babs10 | Feb 22 6:51pm
In reply to @windyshores "Sorry ramping up by starting low and moving the dose up slowly." + (show)
@windyshores

Sorry ramping up by starting low and moving the dose up slowly.

Jump to this post

I see. That makes sense. As you know, I'm considering Forteo (since it's that or Prolia) and wish the dose could be modified. I'm not very big and don't want to be taking the same dose as, for example, a man who weighs 180 lbs., but I think Tymlos is the only one where you can do that.

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sallyj2 | @sallyj2 | Feb 23 9:25am

Being able to adjust the dose makes Tymlos seem good, but it also seems like people post about having more dude effects with Tymlos than Forteo. Thoughts?

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1 reply
babs10 | @babs10 | Feb 23 11:23am
In reply to @sallyj2 "Being able to adjust the dose makes Tymlos seem good, but it also seems like people..." + (show)
@sallyj2

Being able to adjust the dose makes Tymlos seem good, but it also seems like people post about having more dude effects with Tymlos than Forteo. Thoughts?

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I don't know much about Tymlos so others will need to weigh in. My understanding is that Tymlos is like an updated version of Forteo so I thought the side effects would be about the same.

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windyshores | @windyshores | Feb 23 11:35am

Everyone is different. I could not tolerate Forteo but managed to do 2 years of Tymlos with the adjustable dosing.

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susanfalcon52 | @susanfalcon52 | Feb 24 8:04am

I was on Forteo for about five months . No side effects. Then on Tymlos for several months. No side effects.
Now on Evenity with no side effects. I feel very lucky.
In May, I go on Reclast. Very anxious about that as it is an annual infusion. 😳

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2 replies
babs10 | @babs10 | Feb 24 11:34am
In reply to @susanfalcon52 "I was on Forteo for about five months . No side effects. Then on Tymlos for..." + (show)
@susanfalcon52

I was on Forteo for about five months . No side effects. Then on Tymlos for several months. No side effects.
Now on Evenity with no side effects. I feel very lucky.
In May, I go on Reclast. Very anxious about that as it is an annual infusion. 😳

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May your good fortune continue!!!

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beanieone | @beanieone | Feb 25 7:17pm
In reply to @susanfalcon52 "I was on Forteo for about five months . No side effects. Then on Tymlos for..." + (show)
@susanfalcon52

I was on Forteo for about five months . No side effects. Then on Tymlos for several months. No side effects.
Now on Evenity with no side effects. I feel very lucky.
In May, I go on Reclast. Very anxious about that as it is an annual infusion. 😳

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So happy to hear that all of the aforementioned meds are doing/did well for you. Nine months of Tymlos did not go well for me. I’m currently on Evenity (#15/16) and wish I had never heard of Tymlos. I have had one five-year round of Reclast infusions followed by a drug holiday and then two or three more infusions over the course of five + years. I had no issues with Reclast (I started taking it in 2011) in the past and plan to go back to that method of “preservation”, if possible, when I’m finished with the Evenity in July. I do like only needing to worry about meds once a year and the cost is lower because Reclast now has a biosimilar. My doc keeps pushing Prolia or Forteo, not sure why except I read recently that Reclast is not a “forever” maintenance drug. If there are any questions I can perhaps answer for you, please feel free to ask. Cheers!

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