Struggling with Tymlos medicine

Thank you for this info.

I am so confused about what to do after Tymlos. (one an endocrinologist , one a rheumatologist) Both these doctors who I got opinions from don't seem to be sure what to do either. They don't seem confident about recommending any of the drugs . The only thing they agreed on was for me to start with Tymlos. I am 65 years old with bad dexa scores so I know I have to be on something after Tymlos. I have had no bone density gains yet. The endocrinologist claims I still could see gains in the second year. We will see. Please let me know what your Florida dr recommends for you . I'd be curious. Thanks!

@2024tymloshelp I am curious in case I missed it, but how long have you been on Tymlos? And did the doctor who stated you on it get your baseline CTX and P1NP numbers? Those are very telling especially fairly early on.

Made it two years last November and the results were amazing, it surprised my doctor and the doctor who read the bone scan. I did also increased my calcium intake from foods. The aude effect that bothered me was fatigue. As I suffer from an inmunne disorder when I had joint pain it was hard to know if it was the disease or the med. If possible, due continue in less dosage and see how your body tolerates it. Good luck and blessings for you.

susyt, while the black box warning for the risk of cancer has been lifted, the recommendation that it be used for a maximum of 24 months use of Tymlos remains. It remains because there has been no research done on either of the true anabolics for extended use. Practitioners are not bound by the recommendations and some are taking that advantage for their patients. I mention Tymlos, though you asked about Forteo, because you might ask your doctors to order the labs CTX and P!NP before deciding on a consequent medication.
Recommendation for longer term use with Forteo include a sentence saying that Forteo may be useful to some select, as yet unidentified, selection of patients. That my P1NP remains high gives the endocrinologist I see confidence that Forteo remains effective for me. (I was more curious than interested and asked if he would switch me to Tymlos. for a third year. He would not.)
In the 18th 24th month of both of these pth medications CTX had been seen to rise above the therapeutic levels of P1NP. So it could be valuable information for you to know both levels, even though your physicians may not be comfortable with a third year despite a positive relation in the bloodwork.
Finally, to answer your question, the endocrinologist I see has promised that I can stay on Forteo until my numbers are at T-1, which I assume means from now to the end of my days.
Off topic and back to Tymlos, I've heard of doctors prescribing 3th and 4th years without interruption. Also off question, most patients are prescribed Reclast after Tymlos or Forteo. If I have to stop Forteo, I'll take three months of risedronate, because it isn't as effective as alendronate or zoledronate, before reverting back to Forteo.

The doctor never ordered CTX or P1NP testing for me. They only checked my thyroid and other basic bloodwork before starting me on Tymlos.

I have been on Tymlos now for 16 months. Did a dexa at 12 months which showed zero density gains in spine or hip. Oddly, my arm bone did improve though .

FYI-- I was on HRT (natural estradiol gel and pill form of progesterone) for 5 years after menopause. Stopped HRT when I started Tymlos at age 64. Wondering if I had stayed on hormones longer and simply added Tymlos if I would've seen a bump in bone density. --but I am 65 and my gyno took me off HRT just because he thought 5 years was enough. Again, an uncertain topic with doctors these days!

Hi, All. I started Tymlos daily injections 3 weeks ago. Having failed two previous treatment drugs, I am also experiencing significant side effects with this. My doctor recommended stopping for two nights, then resuming every other night. I came across multiple posts about reducing the dose itself through the quick mechanism, when loading the pen each night. I could not find anything on official websites to support this, but it appears a legitimate option. I asked my doctor about it and she had not heard of this. I called my specialty pharmacist, nor had the one that picked up the phone. Has anybody been able to find any official info print on this? I did Skip one night and resume to last night with half a dose. Crazy, with the side effects slapping back instantly. However, I did enjoy the gift of the gift night and a much better day afterwards. I scaled back to half dose, with four clicks (4 mcg). This was done with 100% support of my doctor, as long as I gave her regular updates. Any insight would be appreciated. Thank you!

@cathyf31 There's no research on it. It's likely that a smaller dose still has a beneficial effect. I also find it interesting that the Tymlos pen does allow you to click through the different doses. Why would they have done that? You can't do it with a Forteo pen. Someone must have been thinking about adjusting the dose.

You can experiment by going up one click to 5 and see how that works. The goal is to find the highest dose that you can tolerate. It sounds like you're in a good place now.

@njx58 Thank you. Interesting that I just received a phone call from my Healthcare provider. She is not comfortable allowing me to continue with reduced doses Beyond a week or so. Evidently my specialty pharmacist called her and said it would be off label and it sounded like it spooked her. Not sure how this will play out, because it is highly likely I will not be able to tolerate a full dose for a while. I guess my body has a week to figure it out and be able to do so. My lowest t score was a -3.0 and I really want to be on an osteoblast. However with my other failed treatments, I will have to default to an osteoclast. Not good...yet. With my side effects, my provider is not optimistic that I will be able to stay on Tymlos.

@cathyf31 Hello, I just finished Tymlos. 1.5 years. I had very good results. This is how I started. 2 weeks at 2 clicks, 2 weeks at 4 clicks, 3 weeks at 6 clicks, then full on 8 clicks (my Endo had no issue with this method). I don't think this affected my outcome at all. I did the injection at bed time. It was NO joy. For the first 20 mins, I felt the heart palpitations and the uneasiness of it all. During the day, for the first 7 months felt random stings of weird pain , or muscle weakness. But, I had no choice. My Dexa with TBS was not great. (spine -4.4). Ultimately, I had over 20% increase in the spine. I also take Designs for Health Collagen, which has been part of studies to help. Good luck. I was determined to plow through it. Sometimes, it felt like my lower extremities were not part of my body. Meaning, when crossing the street my head and torso went, and my legs felt like they didn't get the message, and were delayed. Best as I can describe it.
On the Tymlos website is a graph of what to expect. I stopped at 1.5 years. The graph shows not significant growth afterwards. I just started foxsamax. Now I have to get use to a new drug.
I wish you the best of luck.

@vixstermoves Thank you very much!! Best wishes with your new med!!