Have you used alternative dosages for Tymlos or Forteo?
Hi everyone: I’m in my fourth month of Tymlos injections. I’ve noticed from time to time that people mentioned using a variation of the usual dosage of Tymlos or Forteo. For example, instead of one full injection every night, they were injecting every other night, or they were using a reduced amount of the medication in each injection. If you have used an alternative dosage, 1) what was it, 2) why did your doctor suggest it, and 3) how has it worked for you? Thanks!
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Thank you, again. I started full dose and felt like I was clocked over the head. Stopped just short of the 80 last night and sleep was significantly better and I woke up only a couple of times last night vs the past few where I was awake every hour feeling in a fog. Did yoga this morning and so happy to feel like my old self as my daughter and her fiance arrive tonight for Thanksgiving. You are so spot on about the clicks and I almost think we should not tell Radius as they may change the delivery!
Glad to hear you are feeling and looking better. We can beat this and I am grateful to these forums and for all the wonderful women like you who are out here researching, sharing and supporting. Have a blessed and Happy Thanksgiving! And, if you can share your doc's name, that would be awesome. I may just head back to NYC next year for another doc opinion.
Just want to reiterate it is fine to start as low as two clicks. I could not tolerate 4 at first. I stayed at two until side effects eased, and then moved to three and so on. My doc is in Boston. He is very happy that I have been able to take this. He and I worked together for several years trying to get me on something.
Side effects DO ease with time. I have s=zero side effects at 7 clicks but still cannot tolerate 8. Strange!
After Tymlos he wants to lock in gains with Reclast but will try at 1/4 dose with lots of hydration and slow infusion. If I tolerate it, he will do more.
I may also ask for Evenity if my gains are not enough. But I know Tymlos has made me safer. No fractures since I went on it (I have 7 vertebral compression fractures, not fun- 3 from trauma but 4 from one unwise movement). Good luck everyone!
I am going to try Tymlos because I have been reading about the 8 clicks adjustable dose but one of my doctors said that Tymlos DOES NOT HAVE adjustable dosing. From the photos on the website it looks like the same pen as Forte so I am so confused. What does the pen look like? When you order Tymlos do you have to specify the type of pen?
No not a different pen. Docs say that the dose is not adjustable but don't know anything about the pen. Every Tymlos pen has clicks and the dose is adjustable!
Thank you. I just got the doc to prescribe Tymlos. Now I have to start paperwork to get it direct from manufacturer because it is too expensive and my insurance does not cover it apparently. This is getting to be such an effort!!!
@mspatart The paperwork wasn't too bad. Together with Tymlos is very helpful. Have you talked with them? You should have a personal representative there.
I was on this same journey trying to get my Medicare HMO provider to help pay for Tymlos. Concurrently, I tried to get the Tymlos manufacturer to provide it to me at a reduced cost. Since I did not qualify for assistance from the Tymlos manufacturer, I had to pursue the insurance path.
From my experience, if the direct route does not work out ( but I hope it does!), it would be good to understand exactly what your insurance provider is saying - is it not covered at all, or is it covered but you have to provide justification?
My endocrinologist submitted several appeals to my HMO on my behalf to allow the drug to be used. When we got through that hurdle, my initial cost of Tymlos $920 a month. But I recently reached the threshold of max-out of pocket, so my cost going forward will be $130 a month, till the end of the year. Jan 2024 it will reset again until I reach the max out of pocket threshold.
Please keep us posted on your journey!
Oh thank you. I did look up patient assistance on the website and will move forward with the paperwork this week. My GP will file the request so I hope it works. Meanwhile I am back on fosamax till the Tymlos is available.
All this help has been so appreciated.
Thank you again so much.
When my medication was approved, I received a call from Walgreens Alliance telling me that my co-pay was $3,000 for the first three months. I nearly fainted.
Then I remembered that my doctor had dowloaded a manufacturer’s savings coupon, and gave them the Rx group, Rx Bin and Rx id numbers printed on the coupon. Two hours later, they called me back to tell me that the coupon had covered the full $3,000 of my co-pay!
Ask your doctor if he or she can get a coupon for you.
@mmodestii and @mspatart I believe coupons are not available for people on Medicare but check. The company has a patient assistance program via Together with Tymlos with an income ceiling.