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Struggling with Tymlos medicine
Osteoporosis & Bone Health | Last Active: Apr 13 12:19pm | Replies (140)Comment receiving replies
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!
Replies to "Hi, All. I started Tymlos daily injections 3 weeks ago. Having failed two previous treatment drugs,..."
@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.
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@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.