Forteo vs. Tymlos: Which did you choose?

Hello all, this is my first post but wanted to share my experience with Tymlos in case it is helpful to anyone. I had a terrible reaction after the first injection - nausea, bad headache, aching all over. However, when I woke up the next day I felt perfectly fine except it took every ounce of courage for me to inject myself a second time. But I did and … it was fine. None of the reactions from the previous day. I do have mild heart palpitations from time to time, but have now been on it for 13 months and have never had another reaction like that first evening. I say this in case anyone else has the same dramatic reaction to the first injection - I would suggest you try one more and see how it goes. My DEXA after nine months showed spine improved from 4.0 to 3.1 but little improvement in hip (2.7 to 2.6) or wrist (stayed at 4.0). Like many of you, my doctor wants me to go on Reclast after my Tymlos days are done. And, like many of you, I am reluctant to commit to an annual infusion in case I get a reaction like my first dose of Tymlos, but it doesn't go away.

@jellyfish Thanks for sharing your experience. I am planning to ask my doctor about Tymlos. She has recommended Reclast or another long-lasting infusion because I was apprehensive about Reclast lasting for 12 months. The other one is every three months but it's about a 3 or 4 hour infusion!

These are very difficult decisions for those of us with osteoporosis.
JK

@jellyfish Your contribution is so very welcome. Quite a different story but certainly worth sharing. Knowledge is power, the more we share, at least here on Connect, the more we gain. I hope your clinician annotated your next day reaction in the medical records.

Actually that was similar to my reaction to monthly Boniva. It hung around a while. My PCP said she had never heard of it, it was so intense.

Your DEXA tests were after nine months. Mine won't be until it has been a year. Good or bad, I will share them with all of you. May you be content and at ease.
Chris

@delongak, Since you are completing your first year of Forteo, are you having a Dexa done to see if there is any improvement in your bone density! I’m coming up on completing my first year of Forteo and will have a scan in April (and will post results). Using Forteo has been easy. No side effects that I can see or feel, and self-administering the shots is mostly painless (except for an occasional ouchy or tiny bruise). So I’ve got fingers crossed for improvements for both of us!

My doctor hasn't ordered a scan for me. I'm also being monitored for thyroid cancer (stage IV papillary in 2008). In a few months I'll get another ultrasound, so maybe she will schedule the Dexa then.

I am a 65 yo who is in the process of beginning therapy on Forteo, as advised by the Endocrinologist that I was referred to by the Neurosurgeon, who will perform back surgery (L4/L5 extruded disk) in July 2020. Just learned that I have osteoporosis and screws will not hold in the spine after surgery. I know nothing about osteoporosis therapies, and just learning through searches. Endocr says he prefers Forteo bc it has history unlike Tymolos. As I am researching Forteo, I am freaked out by the patient reviews and commentaries on Forteo side effects and questionable efficacy. Since I need to build spine bone mass b4 surgery, (then later hip bone mass with Reclast according to Endocr), I started looking at other agents such as Prolia and Tymolos. Prolia is indicated for risk of fractures, and Tymolos may have the same indication and use as Forteo. I am overwhelmed bc I haven't even had a discussion on what a Dexacan and scores are (bone density test?), as others have eluded to...

I am looking to hear about patient experiences for those who are currently on or have recently been on Forteo and Tymolos therapies, so I can prepare myself for a good discussion b4 I complete the process of filling the Forteo prescription (and laying out BIG dollars).

Thank you for your input, direction and education!

Hello @cpierre, I moved your discussion to an existing discussion of the same "Forteo vs. Tymlos" title. I did this so you could read through many of the previous messages posted on the same subject and some those members could see your post as well. If you are replying by email, you can simply click on VIEW & REPLY to see the new location of your post and to read through some of the older posts.

Good evening @cpierre, Welcome to Connect and to this very important discussion about osteoporosis medications. Many of our Connect members are checking in to update their experience. Let me know if you need help finding all of the different discussions and posts. Most of them are in this Bone, Joints, and Muscles Group.

My endocrinologist had the challenge of finding a non-biophosonate for my severe osteoporosis. My body reacted with bone pain when I tried Boniva. She ordered a lot of images and analyses of kidneys and calcium and other things I wasn't too familiar with at that point.

I chose Tymlos and I have to say, I have had no side effects other than a bit of nausea the first few days. I seem to tolerate the injections well and always do it in the morning. I am in month 9 of a planned 18 months. Then, I hope there is something other than bisphosphonate to keep the new bone healthy.

Last month I traveled for the first time with the Tymlos kit. Everything was fine although I am glad Tymlos is stable and doesn't have to be refrigerated. Forteo does need to be refrigerated.

But most of my Tymlos decision was based on the fact that with daily dosing, you can quit any time if you have an issue. With monthly, bi-annually or annual treatments, you are not able to just stop if you run into side effects trouble.

So...take some time to become familiar with what folks are thinking and feeling.

Be safe and protected,
Chris

@artscaping I had an exchange with my endocrinologist recently and in it I asked about Tymlos. For some reason she sees Reclast as a better option for me. I guess I need to find out why. It seems to me that since Tymlos builds bone and Reclast only maintains it, that Tymlos would be the best option, other than the price. Do you have decent coverage for it, Chris? It's so pricey but at least when you start on it you know that you will only have to be paying for about 18 months.
JK

What most doctors don’t tell you is when you come off of Forteo or Tymlos, you have to go on a biphosphonate or you lose any improvement you gain within a matter of weeks. And the biphosphonate‘s are so dangerous, you will be on them the rest of your life according to what my surgeon and endocrinologist told me.