Struggling with Tymlos medicine

Please respond to my post that says Tymlos medicine

I have done two years of Tymlos with excellent gains.

However, I could not tolerate a full dose. I tried and ended up in the ER.

I regrouped and restarted at only two out of eight clicks on the injection pen, which is 1/4 dose, and moved up slowly. For most of my treatment I was at 6 clicks out of 8, or 7. My doc totally supports this.

darla1, some patients start at a low dose and reach 8 clicks after several weeks, giving their body time to adjust, some stay on 6 clicks for the duration, some simply can't tolerate Tymlos. You might be allergic to the preservative in Tymlos. One patient after quitting the drug said sweetly, "I started laughing again."
We are supposed to do what our physicians tell us, but If you can't contact your physician over this holiday, I'd suggest that you take a drug holiday.
There are other drugs.
You are taking the same dose that 160, 170 180 lb people are taking. I think that we (100lbs here, yes soaking wet) are over dosed.
When I decided on Forteo 5 months ago, one consideration is that the Tymlos dose is 4x the medication that is in Forteo. And the gains are similar enough that both companies can claim higher gains It makes sense to me that with a higher dose there would be more side effect. Another consideration was the preservative in Tymlos.
I don't have any side effects with Forteo. Of course that doesn't mean you wouldn't. Some can't tolerate Forteo and are fine on Tymlos.
I admire your fortitude. But I don't think that Tymlos is the drug for you. Some people suffer through and have good gains, others suffer through and have no gains. If Tymlos were your only choice it might be worth the suffering.
I'm glad you are seeing your physisican soon.

@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I really think you might want to try a lower dose before deciding on that.

I could not tolerate Forteo at all and the dose is not adjustable. I even saw an immunologist to try to get on. This was before Tymlos was available.

So everyone is different. But full dose of Tymlos sent me to the ER before I came up with the plan to start with a low dose and ramp up.

I initiated info on starting low, and doing partial doses if necessary, on this forum. My doctor is head of endo at a top hospital and tells me he has incorporated this strategy into his own practice after my success with Tymlos. So many quit after trying a full dose because it is hard to tolerate.

Start at two clicks and move up. You can probably move up quickly (every few days) until you get to 4 clicks, then slower ramping up helps. Even 4 clicks is therapeutic (my doc says and studies show) and over time you can try to get to 6 or 7. The adjustable pen for Tymlos is key.

Many doctors are constrained by the studies done and the directions for use that resulted from the manufacturer. Your doc may not be able to suggest this. But you can do what you prefer to do and tell your doctor what you are doing.

I appreciate you responding, and will take your advice to heart.
I’m a soldier on kind of person, and don’t want to stop one drug and try another. “If what doesn’t kill you makes you stronger “ is the approach I’m willing to take. My T level is -3.7 so I’m still trying to wrap my head around the disease it self, and to struggle with the medicine on top of that, I’m sure you get it.
If I may ask, what were the sights , the problem you were having that brought you to the ER?
I am a very stubborn woman, and will avoid hospitals to my own detriment thinking I can get through it on my own.
Now with 2 grandkids, I need to heed the warnings my body is telling me.

I appreciate you advice as well, and did find the full dose for someone my size a bit too much, and wondered if that was taken into consideration by my doctor , which will be my first question when I see him next week. Thank you so much for your response, it has given me a lot to think about

Tymlos allows you to change the amount of medicine you get at one time. Other than 1st Aid in Gril Scouts I have no medical background. However, I do read in this list that many have the same issue as you and they lower the amount they take. So search through the articles. It may give you the strength you need. I'm a big woman and Tymlos doesn't phase me, however, it has others. Learn from your peers. Best wishes, Sarh

@darla1 I had a preexisting issue with atrial fibrillation and felt that the fast heartbeat after Tymlos may have triggered an episode. A couple of years later, I am not so sure. No proof anyway.

Hi, Everyone-- I'll weigh in... I, too have struggled with this drug-- for all the reasons everyone is talking about and throw in hair loss, which is psychologically crushing. I'm approaching month 5 and have have only gotten to 4 clicks in that time. That's all I can take--I'm very small. I have vowed to quit Tymlos every day since April. As Windyshores knows, I'm just hoping that a half-dose will have some beneficial effect. For what it's worth to you: my current plan is to make it to 6 months, have a Dexa scan, and see where I am. If I've achieved no gains/no significant gains in that time (when gains are supposed to be the greatest), I think I will stop. I, too, am miserable on this drug but am trying to do what's best for me long-term.

@darla1 -I was on Tymlos for 2 years and did really well with it. I never did full dose because I didn’t realize you could have different doses. The only side effect I had was dizziness, so I took it at night. I have also been Evenity, prolia, and now Forteo. Out of all of those I had the best luck and gains with Tymlos. I will probably go back to it.