Forteo vs. Tymlos

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

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.

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@jellyfish

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.

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@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

Liked by jmanj

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@jellyfish

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.

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@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

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@delongak

I'm just finishing my first year of Forteo and do expect to use something else after I'm done. The shots are given with a VERY fine needle and I usually can't feel them at all. Bone cancer has only been observed in lab rats, not humans, in connection with larger doses than humans get.

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@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!

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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.

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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!

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@cpierre

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!

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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.

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@cpierre

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!

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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

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@artscaping

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

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@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

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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.

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Thank you Mentors and Contributors alike! I'm shaking like a leaf as I read through the commentaries. As it stands now, I should have already started the Forteo therapy. I just want to get some sense of what I'm in for, but for right now, with the feedback from this very helpful chat site, my leanings are towards Tymlos (I've been spelling and pronouncing it wrong all this time!). Now, of course, I must see what position the Endocr will have, and take it from there. Wish me luck… but I won't lie, I am scared as all hell !!! Thank you all…

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If you are shaking like a leaf, does that not tell yourself you need to sit back and reevaluate? When I don’t have peace about something and move forward anyway, I always live to regret it. There are many many many natural ways of dealing with osteoporosis. As some doctors have said, osteoporosis truly is not a disease as much as it is a health situation that can be handled in a non-drug way. I would just encourage you to don’t make a hasty decision. Have you done your research on both sides of the fence… Pro and con drugs. There is a group on Facebook, if you are on Facebook, called osteoporosis natural remedies. There is a lot of encouragement and help out there for people who want to stay off the drugs which end up causing long-term negative side effects to your bones.

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@cpierre

Thank you Mentors and Contributors alike! I'm shaking like a leaf as I read through the commentaries. As it stands now, I should have already started the Forteo therapy. I just want to get some sense of what I'm in for, but for right now, with the feedback from this very helpful chat site, my leanings are towards Tymlos (I've been spelling and pronouncing it wrong all this time!). Now, of course, I must see what position the Endocr will have, and take it from there. Wish me luck… but I won't lie, I am scared as all hell !!! Thank you all…

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@cpierre I understand your being nervous, I will be too before I embark on what with what I think will be Reclast. We just have to remember that many more have been helped with these drugs and had no serious side-effects. Knowing people personally is helpful to me. I know a few on Reclast and a couple of other therapies, and none have had any problems.
Everyone is scared before anything with risk, such as drugs like this, and also surgery of course. For some reason surgery doesn't make me nervous but I know it does for many.
When do you plan to start Forteo or Tymlos?
JK

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@contentandwell

@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

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@contentandwell, Thanks for the update JK. Reclast is another bisphosphonate. Those who experience painful and debilitating side effects from Boniva and other bisphosphonates may be more likely to have side effect issues with Reclast. For me, that means jaw pain, sternum and ribcage pain at a level that needs MFR attention. The eye sockets, facial bones, and jaw were so bad I just wanted to have all of my teeth pulled

If it is a monthly infusion or capsule…..then the side effects will last, in some form and pain intensity, until you are ready for the next dose. Mine was monthly and other than MFR there was no way to stop the pain. It took about 3 weeks until the pain diminished just in time for the next dose. I thought it was just me at the beginning so I did another monthly dose and of course, the pain came right back. I will not take anything that cannot be stopped immediately and leaves your body immediately.

My insurance advisor looked at all of my options and I now have coverage that goes from $500 a month in the first coverage period….then up and down until the end when it is $99 a month. I think that overall, I averaged $131 per month for Tymlos and I started in the middle of the year. I am not good at figuring all of those things out….so I turn it over to someone who is good at it. My pharmacist is a gem and squeezed in another $99 supply on December 30. Love that man.

Enjoy some sunshine today.
Chris

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I am 61 yrs old and finishing my 12th month of Tymlos right now. I have an appointment in 2 weeks with my endocrinologist to discuss what is next. She doesn't think wise to use up the whole 24 month lifetime amount when I'm so young. Since I've had extremes gerd the past 2 years, oral bisphosphonates are out so it is prolia or reclast. I'm probably more anxious about the possible issues with weakening my immune system right now which is a possible side effect prolia therapy, so am leaning towards Reclast. When I discussed my fear of an injection of medicine that lasts 12 months my endo said she can do 6 months at a time. The progress is slightly slower but she has done it that way for others like myself. She also said it was very rare to have any extreme reaction – like being in bed for weeks. I wonder why we can't even do quarterly – has anyone ever hear of that? I am going to ask my endocrinologist. I'd rather take less at a time but maybe less than 6 months isn't strong enough to lock in – I really don't know if it's been studied at all. Also, for anyone considering Prolia it may help to know, my sister did only Prolia for 4-5 yrs and went out of osteoporosis and isn't doing anything now (I believe it's been a few years). She had no bad reaction at all. I do not know her numbers, but her spine was not as bad as mine (-4) to begin with. Like someone said above, it is a lifetime of taking something, at least every few years, but better than years ago when there weren't alternatives other than oral bisphosphonates. Thank you to everyone for sharing – it does help to process.

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