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!

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

@contentandwell

@windyshores It sounds as if with the guidance of your doctor you are doing all you can to be able to manage to take Tymlos. I hope you do succeed.

I am curious, do compression stockings raise blood pressure? I am borderline high and have started wearing compression stockings because I have been retaining fluid in my legs (started prior to taking Tymlos) so I sure do not need something that's going to make my BP any worse.
JK

Jump to this post

After I was in the hospital with afib which I believe was triggered by Tymlos (though I have had 4 episodes in 5 years), I talked with cardiologist, who said to do Evenity not Tymlos. I talked with two endocrinologists. One said retry Tymlos but start at a low dose and stay at the lower dose longer before ramping up. That MD did not tell me how to do it but left it to me.

My main endo, who is chair at a top hospital, left the decision of retrying Tymlos versus Evenity up to me but said retrying was "logical." He recommended compression stockings to treat low blood pressure. He also said start low, whatever I want, and ramp up slowly. He mentioned that I could also do, say, 3 clicks then after 15 minutes do another 1-3. I started with two clicks for a week, then added the thrid 15 minutes later, then moved to 3 clicks all together.

I have changed to the morning and take my blood pressure before the shot. So far so good. In a week I will go up to 4 clicks, a half dose. Docs want me to do this but don't give me specific instructions. I am going by how I feel. I will tolerate some side effects but not afib and I need to be able to function. I will let you know how it goes.

REPLY
@contentandwell

@windyshores It sounds as if with the guidance of your doctor you are doing all you can to be able to manage to take Tymlos. I hope you do succeed.

I am curious, do compression stockings raise blood pressure? I am borderline high and have started wearing compression stockings because I have been retaining fluid in my legs (started prior to taking Tymlos) so I sure do not need something that's going to make my BP any worse.
JK

Jump to this post

Apparently they do raise blood pressure. But if you have congestive heart failure, it can help push fluid up and keep it out of your legs. I honestly doubt that the stockings will help my situation and I think you should continue to deal with your fluid issues with the stockings. I need to drink more water and salt helps me too. MY bp tends to be in the 85-90/40-50 range.

REPLY
@kilh

I was wondering when you are taking less than a full dosage, do you only use that pen for a month and throw the unused amount away or do you continue to use that pen until you have used an amount equal to 30 days full dosage? If you get to full dosage and still have problems will you just back down on clicks or give up on Tymlos? Also, are you on your own to increase, or are your docs instructing you on when to increase? I do not hear from mine unless I send a message. Sorry for all the questions. But I really want to try again and I need to call and ask if it is all right to start again but at what dosage. My docs have very few patients that are on Tymlos and I do not think they have ever tried starting at a partial dosage and working up. I would think that partial dosages for the two years would help in building bone back before changing to another drug. I would love all the feedback and opinions from others who have used Tymlos. Thanks to all for support and I hope you get to your goal soon. Stay connected as to how that turns out. Stay healthy and safe. KLH

Jump to this post

I keep the pen I am using in the fridge. The only reason to have it out is that it is more uncomfortable to inject if cold. I will probably go past 30 days but by 5 days or so. If I cannot get to a full dosage,I will ask my doctor whether to do 1/2 dose or go on Evenity. That depends on your situation. I had three new osteoporotic fractures in April and 3 old traumatic ones. My worst score is -3.9. I can't really fool around.

REPLY
@windyshores

I keep the pen I am using in the fridge. The only reason to have it out is that it is more uncomfortable to inject if cold. I will probably go past 30 days but by 5 days or so. If I cannot get to a full dosage,I will ask my doctor whether to do 1/2 dose or go on Evenity. That depends on your situation. I had three new osteoporotic fractures in April and 3 old traumatic ones. My worst score is -3.9. I can't really fool around.

Jump to this post

I do not really know my scores because my doc does his own comparison and calculations. And it is never posted on my chart that I can see. I guess I am going to start asking more questions. I only see him yearly and not much discussion in between. It has been years since I had two years of Reclast and no side effects. And then last year out of the blue he talks about me starting Tymlos for two years. No discussion only said it was a self-injection medication. So I got it from the pharmacy and started but only lasted four months with the side effects. I sent a message with what was happening and he said just to stop. We were going to switch to Prolia after my dental surgery and the 5 month waiting period after dental work. That is why I want to try Tymlos again because you do not have to wait with dental procedures. Also because Tymlos builds bone better if you can last two years. Then change to a maintenance medication. I am going to ask what my scores have been and see if I can get some scores. Thanks for your reply and information. I have been learning alot from everyone and finding out how little I know. Stay in touch and how Evenity goes if you start it. Stay well and be safe. KLH

REPLY
@kilh

I do not really know my scores because my doc does his own comparison and calculations. And it is never posted on my chart that I can see. I guess I am going to start asking more questions. I only see him yearly and not much discussion in between. It has been years since I had two years of Reclast and no side effects. And then last year out of the blue he talks about me starting Tymlos for two years. No discussion only said it was a self-injection medication. So I got it from the pharmacy and started but only lasted four months with the side effects. I sent a message with what was happening and he said just to stop. We were going to switch to Prolia after my dental surgery and the 5 month waiting period after dental work. That is why I want to try Tymlos again because you do not have to wait with dental procedures. Also because Tymlos builds bone better if you can last two years. Then change to a maintenance medication. I am going to ask what my scores have been and see if I can get some scores. Thanks for your reply and information. I have been learning alot from everyone and finding out how little I know. Stay in touch and how Evenity goes if you start it. Stay well and be safe. KLH

Jump to this post

You should always have your scores. Either through a patient portal or by requesting them from the doctor or medical records. I can't imagine making decisions without having them!

REPLY
@windyshores

After I was in the hospital with afib which I believe was triggered by Tymlos (though I have had 4 episodes in 5 years), I talked with cardiologist, who said to do Evenity not Tymlos. I talked with two endocrinologists. One said retry Tymlos but start at a low dose and stay at the lower dose longer before ramping up. That MD did not tell me how to do it but left it to me.

My main endo, who is chair at a top hospital, left the decision of retrying Tymlos versus Evenity up to me but said retrying was "logical." He recommended compression stockings to treat low blood pressure. He also said start low, whatever I want, and ramp up slowly. He mentioned that I could also do, say, 3 clicks then after 15 minutes do another 1-3. I started with two clicks for a week, then added the thrid 15 minutes later, then moved to 3 clicks all together.

I have changed to the morning and take my blood pressure before the shot. So far so good. In a week I will go up to 4 clicks, a half dose. Docs want me to do this but don't give me specific instructions. I am going by how I feel. I will tolerate some side effects but not afib and I need to be able to function. I will let you know how it goes.

Jump to this post

I hope you are doing well with the lower dosage and no side effects. Please keep in touch as you increase the dosage and how you feel. I am hoping soon the docs will let me try again and see how it goes. I would like to finish the while two years if I can. But my BP goes too high (185/105)and my pulse is>100. I hope to follow your example and ramp up slowly. Thanks for sharing much appreciated. My thoughts are with you as you start again. KLH

REPLY
@kilh

I hope you are doing well with the lower dosage and no side effects. Please keep in touch as you increase the dosage and how you feel. I am hoping soon the docs will let me try again and see how it goes. I would like to finish the while two years if I can. But my BP goes too high (185/105)and my pulse is>100. I hope to follow your example and ramp up slowly. Thanks for sharing much appreciated. My thoughts are with you as you start again. KLH

Jump to this post

Will keep you posted. Tymlos drops blood pressure 10-20 points, for most people.

REPLY
@windyshores

You should always have your scores. Either through a patient portal or by requesting them from the doctor or medical records. I can't imagine making decisions without having them!

Jump to this post

Thanks for the reply. I agree but all these years I only see him once yearly and then not much said. He does his own thing and makes the two-year comparison for his own records but never states any numbers. So from what I do see I failed but by how much I do not know. I guess I better start asking more questions. I now have a PA assigned to me since my doc has moved up the Admin chain and is not there much anymore but does make decisions. My Dexa scan is due in Nov. so I am going to ask alot of questions. I never knew there were so many medication choices for bone building. In our patient portal, it does not give scores only that a report has been auto- filed. I do not make any decisions. I am just given a route to follow. At the time I had no background info like I have now since I have been on the Mayo Clinic Connect. This has been an eye-opener. I am grateful for this and everyone else. Take care. KLH

REPLY
@kilh

Thanks for the reply. I agree but all these years I only see him once yearly and then not much said. He does his own thing and makes the two-year comparison for his own records but never states any numbers. So from what I do see I failed but by how much I do not know. I guess I better start asking more questions. I now have a PA assigned to me since my doc has moved up the Admin chain and is not there much anymore but does make decisions. My Dexa scan is due in Nov. so I am going to ask alot of questions. I never knew there were so many medication choices for bone building. In our patient portal, it does not give scores only that a report has been auto- filed. I do not make any decisions. I am just given a route to follow. At the time I had no background info like I have now since I have been on the Mayo Clinic Connect. This has been an eye-opener. I am grateful for this and everyone else. Take care. KLH

Jump to this post

I make my own decisions and my doc likes it that way. I cannot imagine not having my scores! I made a chart for every scan since 2002 🙂 Every doctor should be giving patients choices. There are decisions to make.

REPLY
@windyshores

I keep the pen I am using in the fridge. The only reason to have it out is that it is more uncomfortable to inject if cold. I will probably go past 30 days but by 5 days or so. If I cannot get to a full dosage,I will ask my doctor whether to do 1/2 dose or go on Evenity. That depends on your situation. I had three new osteoporotic fractures in April and 3 old traumatic ones. My worst score is -3.9. I can't really fool around.

Jump to this post

How do these fractures happen. By falling or just by walking. All of mine are from farm accidents or being in the wrong place at just the right time. The first one was trying to put a gate on the J hook and I kept lifting higher on my end then my rotator cuff was torn. So now I am dealing with a reverse shoulder replacement and part of my bicep also was torn and shrinking down. It was my left arm and dominant side and my bones were so bad. I still cannot reach behind to get my back or my right arm. /now the right side needs a new shoulder when I decide to go for it. Both thumbs, right shoulder, and left foot get shots every 31/2 months till that stops working, and then there is always plan B(surgery). I have lost alot of my cushions and shrunk 2". Since my shoulder surgery my fingers are numb because the nerve is pinched. So again here comes surgery to the rescue. That is part of why I want Tymlos to work and help my bones get better and stronger. Tomorrow I am going to message my PA and get some more information and what my scores are. So stay tuned for the next episode. KLH

REPLY
Please sign in or register to post a reply.