Forteo vs. Tymlos: Which did you choose?

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!

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@windyshores

I talk with Together with Tymlos, the patient support program. You can google it.
Eight clicks is too much for me. With 6 or 7 I have no side effects right after the shot. With 8 I am still in bed feeling woozy.

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Good morning, Dr. appointment today? Hope all goes well. Still going to do 8 before or not. Maybe stay at 7 and that dosage should do some good. Keep in touch. KLH

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@kilh

Good morning, Dr. appointment today? Hope all goes well. Still going to do 8 before or not. Maybe stay at 7 and that dosage should do some good. Keep in touch. KLH

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I did 8 yesterday and did not feel well. And heart felt unstable. Did 6 today to recover. I may do 7, 7, 6 for awhile or 6.6. 7. Depending on what doc says. The half life is 48 hours I believe so it accumulates.

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The tortoise will stay at 4 for two weeks and then go for 5 for two weeks. It may be next year before I get to where the hare is. Good wishes for the doc appointment. Till next time have a good day. KLH

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Doctor said 6 is fine for a year and not to push myself. If I can do 7 sometimes, great. He is very pleased!

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@windyshores

Wow you are at a half dose! The hare has slowed down. Most days I do 7 clicks but every third day or so I go back to 6 because my heart feels a little floppy several hours later on 7. Today I am moving on to 7 consistently. I meet with my endo doc tomorrow and in his honor might do 8 tomorrow morning 🙂 You are doing great! I called the company and told them they are losing customers because docs tell people to start at full dose, and Radius could do more business if docs told people they could start low. I was only told that because of my bad reaction on my first try.

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@windyshores I think if doctors suggested starting low it might cause people to fear the drug more! They would immediately think there must be something to worry about if they start with a full dose.

Having seen on here that many people do go with a lower dose and work their way up if they have a negative reaction initially, I asked my endocrinologist if I should start low and she said no.

I think it's better probably that if you do have a difficult reaction to inform your doctor and then the doctor could suggest backing off on the number of clicks. If the patient is like me and like many people on Tymlos though, they will be fine with the full dose from the start.

You do mention headaches a while after which has me wondering because I do my shot before bed and on most mornings I wake up with a headache but it does go away shortly after arising. I wonder if Tymlos might be the cause of it. It is such a minor side effect though that it would not cause me to stop using Tymlos. It would just be nice to know what the cause of the headache is.
JK

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@contentandwell

@windyshores I think if doctors suggested starting low it might cause people to fear the drug more! They would immediately think there must be something to worry about if they start with a full dose.

Having seen on here that many people do go with a lower dose and work their way up if they have a negative reaction initially, I asked my endocrinologist if I should start low and she said no.

I think it's better probably that if you do have a difficult reaction to inform your doctor and then the doctor could suggest backing off on the number of clicks. If the patient is like me and like many people on Tymlos though, they will be fine with the full dose from the start.

You do mention headaches a while after which has me wondering because I do my shot before bed and on most mornings I wake up with a headache but it does go away shortly after arising. I wonder if Tymlos might be the cause of it. It is such a minor side effect though that it would not cause me to stop using Tymlos. It would just be nice to know what the cause of the headache is.
JK

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I had three doctors tell me I could start low, but that was after I landed in the ICU after my first few shots at half dose. Full dose was impossible for me: I got really sick but even a few days of half dose, I believe, threw me into afib and tachycardia lasting 7 hours.

Mine is a special situation. But I have two friends who just quit Tymlos due to side effects at full dose. I think in those situations docs and company should suggest trying to get your body used to it gradually. I believe there are a lot of people quitting unnecessarily.

My doc told me that 6 clicks is definitely enough to be effective, and even told me he would be happy with 4. So that is the other issue: the idea that it has to be 8 clicks to help, so people quit when they cannot do 8. I am doing 7 as much as I can tolerate, and 6 the other days.

I have no idea why any doc would say no to starting low.

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I also would like to get some feedback regarding forteo versus tymlos. I was all set on getting evenity when I passed out in the shower and fell. The CAT scan is showing that I may have had multiple mini strokes so evenity is out because there is a black box label warning of potential heart attacks or strokes. So now I am back to square one trying to figure out what treatment is best for me. So if somebody could tell me which one is better and why I would greatly appreciate it!

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Is anyone out there that has tried both that can give a comparison? I am on Forteo and wondered for a while if it was the right choice (it has side effects that subside a few weeks after beginning treatment). I'm now 8 weeks in and happy that's the one my doctor prescribed.

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@lkel

Is anyone out there that has tried both that can give a comparison? I am on Forteo and wondered for a while if it was the right choice (it has side effects that subside a few weeks after beginning treatment). I'm now 8 weeks in and happy that's the one my doctor prescribed.

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Everyone is different. I tried Forteo before Tymlos was available. Even at a low dose, I had immediate tachycardia, palpitations, extreme shortness of breath and wooziness. I went to an immunologist and tried to get desensitized. With Tymlos, I had side effects that were tolerable but a delayed episode of atrial fibrillation. I started at two clicks out of the 8 on a pen and moved up slowly and have been able to tolerate it. Their methods of action are a little different. For me, Tymlos is at least tolerable. But many people do fine on Forteo. I wound not second guess your choice. It sounds like you are doing fine on Forteo!

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Thx, I had my doubts for a while. Good that there are options.

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