Forteo vs. Tymlos: Which did you choose?

For anyone still looking at Forteo. I just completed two years, had no side effects the whole time (other than a rare pinch feeling when administering the shot). Had 12% increase in Spine Density and 5% in Hip (wished that had been more). Next step is Reclast infusion.

I have been on the full 80 mcg dose of Tymlos for 3 1/2 months but have dropped my dose to 60mcg due to side effects. Has anyone heard anything about effectiveness on a lower dose? I weigh only 102 pounds.

My docotr said 1/2 dose could help, and that is only 4 clicks. Of course full dose is best but 6 clicks should have benefit according to my doc and posts I have seen elsewhere. I am still on 3 clicks trying to work up, and weigh the same as you!

@laurainmass I am glad to hear from someone who has cut their dosage back. At 60mcg do you still have the side effects or are they less or gone? What side effects did you have. I only weigh 96lbs now from 112. My PCP and PA took me off completely. But now I have three months supply and am approved for 18 months from Radius for free each month. So I really want to try again. But maybe I can convince my PCP to go with a lower dose to see if any side effects occur. Can you tell a difference in how you feel on the lower dose? I read somewhere a person was on 1/2 dose every other day to start. I would have liked a little more information on how that works. Hope you get a response about the effectiveness of the lower dose. Thanks for sharing. Maybe I will find a solution and get back to the nightly injection without any bad side effects. I wish you well and stay healthy KLH.

I stopped a month ago due to afib (and other side effects). I talked to many doctors and decided to try again rather than go to Evenity. Just to be sure one way or another. I have been doing TWO clicks (20mcg) for 5 days with no side effect. Three clicks gives side effects. I just now did 2 clicks, waited 15 minutes, then did a third and have side effects even at this level. I will do 3 clicks for a week and then go to 4. I take my blood pressure before and after. I have low bp and Tymlos drops it 20 points. I am doing it in the morning because I have never had afib in the am. I drink water and keep my legs up to help with bp.

I am determined to give this a second try but will take as long as it takes to move the dose up safely. There WILL be side effects but safety is paramount for me. I am willing to suffer I just don't want to end up in the ER! (My endo says there is a possibility that Evenity would not cause side effects and so suffering on Tymlos might be unnecessary. He thinks my decisoin to retry Tymlos is "logical" and this way I could have Tymlos then Evenity for maximum time on bone builders.)

I have three old traumatic thoracic fractures and three recent osteoporotic lumbar fractures. So much pain and I cannot lift anything. I feel powerless. I will suffer a lot to get more bone strength and avoid fractures.

Good afternoon @laurainass, Welcome to connect. I am glad you found us and hope that you know we are patients, former patients, caregivers, and folks with experience that can be helpful to others.

I completed two years of. Tymlos this year and had no side effects. What are you experiencing? Which side effect motivated you to reduce the dose each day? Were you able to discuss the decision with an endocrinologist or even your primary care physician (PCP). Just in case you want to talk about your dose with medical professionals at the Tymlos manufacture, Amgen.....the number is 800 772 6436.

Knowledge is power in my book. Good luck.
Chris

@laurainmass I have been on Tymlos, full dose, since March with no really troublesome side effects. My heart rate may increase to somewhere in the high 70s BPM, and initially, I had next morning light-headedness, but that subsided after a few weeks.

What type of side effects are you experiencing?

@windyshores and @kilh I hope you both find some success with the lower dose and that it will help your osteoporosis. You both mention being small which makes me wonder if that makes it more difficult to tolerate and more apt to cause side effects. I am experiencing what I have referred to as "puffy belly", basically fluid retention in the belly area. I'm not thrilled about that but I am willing to tolerate it if Tymlos will give me better bone density.
JK

Thank you. I restarted tymlos at 2 clicks and am up to 3. My docs wanted me to ramp up very slowly. The first time I tried it I ramped up but more quickly. My atrial fibrillation episode included heart rate over 185 BPM. I have switched to morning since I have never had afib in the morning and take by blood pressure. It has to be over 100 at least and is often 88/45 or similar, in which case I drink water and eat salty chips. I am also getting fitted for compression stockngs to raise bp. I am steadily on 3 clicks and in a week will go to 4, a half dose! My goal is 6-8 clicks.

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

@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