How long did your doc have you on Tymlos?

Posted by katwhisperer @katwhisperer, Jul 7, 2023

If you were on Tymlos, how long were you on it? My doc says she keeps most patients at the full two years, even if there's significant density improvement - if any score is still in osteoporosis range.

But I'm wondering if other doctors feel it's more prudent to save 6-12 months usage as a possible "refresher" in the future, if needed, in case density drops again a decade or so down the road - vs using up the whole 2 allowable 2 years now - then having nothing but bisphosphonates in the toolbox - particularly if patients are on the younger side - '50s/early /60s

Thoughts?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for Karen Anderson @fresian1

Thank you, windyshores. I won’t do that again. I appreciate being able to come here with questions.

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Hi Karen…please make an appointment with your doctor and have him show you how to properly inject yourself. That’s very important. You want to benefit from Tymlos and not over medicate. If u feel you’ve not injected enough medication and need to add more, at the same time, you can use the same needle but otherwise you need to dispose of a needle after every injection whether you’re injecting a full dose or less. Try to inject at the same time daily and remember that you’ll hear clicks as you’re injecting and the pen will revert back to zero when you’ve injected the full desired amount. I’ve not heard of a needle being broken under the skin so if you’re injecting in the abdomen, grab the skin between your thumb and forefinger, insert the needle then let go and inject. Inject slowly, not aggressively and you will hear 5 clicks if you’re injecting 50 mg, 8 clicks for the full dose, etc. When ur done injecting, pull the pen out slowly, remove the needle and dispose of it. The needle shouldn’t break off under ur skin. Do try to make an appointment with your doctor’s office and have ur doc or a nurse assist you. They really should have done that when you first began Tymlos. There is also step by step instructions that come in the box. I used that until I felt comfortable with the process but my doctor’s nurse instructed me the first time and that was really helpful. Blessings to you on this journey. Rose 🌹

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Thank you, Rose. I will make an appointment.

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Profile picture for windyshores @windyshores

I got this info from two of my doctors, and from my bone marker tests. Also "Great Bones" by McCormick... and anecdotally (see threads below). Radius, the manufacturer, only provides assistance for 18 months. (My copy of "Great Bones" is in storage at the moment or I would give you a citation!).
https://www.inspire.com/groups/bone-health-and-osteoporosis/discussion/taking-tymlos-longer-than-2-years/
https://connect.mayoclinic.org/discussion/disappointing-results-would-you-continue-or-skip-2nd-year-of-tymlos/

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The trial data presented by the manufacturer covered an 18-month period, which suggests to me that they didn't expect it to be used for 24 months. Just a guess.

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Profile picture for omgirl @omgirl

Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for 18 months or a bit longer and did NOT go back on — Was supposed to say off Prolia for 18 months before started Tymlos! In between I was taking Evista for about one year but it didn’t help and my DEXA was down approx 10% so we discussed Tymlos since my sister mentioned as she had already taken it. Unfortunately I’m allergic to bisphosphonates so that’s not an option and I was also diagnosed with jawbone necrosis over a year ago which I was treated for. A side effect of both bisphosphonates and Prolia so not sure what I’ll do after Tymlos. Perhaps something new or more valuable research will be available within the next couple of years

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@omgirl hi, how did everything go with Tymlos? I am in the same boat that you were. I stopped taking Prolia without a relay drug around 16 months ago and will be starting tymlos next week. I came across a couple of other people that were in the same boat as us and did great on Tymlos. Would you mind sharing your experience with me? Are you taking anything else now?

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Profile picture for punkratty @punkratty

@omgirl hi, how did everything go with Tymlos? I am in the same boat that you were. I stopped taking Prolia without a relay drug around 16 months ago and will be starting tymlos next week. I came across a couple of other people that were in the same boat as us and did great on Tymlos. Would you mind sharing your experience with me? Are you taking anything else now?

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@punkratty I’d say positive results but didn’t have a DEXA until 6+ months post treatment and it was basically the same as 6-12 months post Prolia. Had a couple issues while using the Tymlos so took a break and then started back at lower dose and built back up. I’d definitely recommend trying as my sister had great results!

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Profile picture for omgirl @omgirl

@punkratty I’d say positive results but didn’t have a DEXA until 6+ months post treatment and it was basically the same as 6-12 months post Prolia. Had a couple issues while using the Tymlos so took a break and then started back at lower dose and built back up. I’d definitely recommend trying as my sister had great results!

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@omgirl thank you so much for the reply! I truly appreciate it. I will be starting next week can’t wait to see my end result. Even though I’m still two years away lol

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Profile picture for windyshores @windyshores

I am wondering this as well since one doc is recommending 18 months and another is recommending 2 years.

Of course the two year limit has come off and we also have Evenity for future use.

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@windyshores
I am at the 8 month mark of Avenity. The neurosurgeon wouldn't touch me without doing Avenity for at least 3 months. I am scheduled for a three stages fusion in two weeks. Dr. B doesn't want screws, cages, and rods.

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My doctor wants me to have 2 years on Tymlos. However, he warns that insurance may stop coverage after 18 months. Considering raloxifene for next step

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18 months, then evenity. My results on Tymlos were good, no side effects.

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Profile picture for dooshie @dooshie

Hi Karen…please make an appointment with your doctor and have him show you how to properly inject yourself. That’s very important. You want to benefit from Tymlos and not over medicate. If u feel you’ve not injected enough medication and need to add more, at the same time, you can use the same needle but otherwise you need to dispose of a needle after every injection whether you’re injecting a full dose or less. Try to inject at the same time daily and remember that you’ll hear clicks as you’re injecting and the pen will revert back to zero when you’ve injected the full desired amount. I’ve not heard of a needle being broken under the skin so if you’re injecting in the abdomen, grab the skin between your thumb and forefinger, insert the needle then let go and inject. Inject slowly, not aggressively and you will hear 5 clicks if you’re injecting 50 mg, 8 clicks for the full dose, etc. When ur done injecting, pull the pen out slowly, remove the needle and dispose of it. The needle shouldn’t break off under ur skin. Do try to make an appointment with your doctor’s office and have ur doc or a nurse assist you. They really should have done that when you first began Tymlos. There is also step by step instructions that come in the box. I used that until I felt comfortable with the process but my doctor’s nurse instructed me the first time and that was really helpful. Blessings to you on this journey. Rose 🌹

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@dooshie The Tymlos manufacturer also has a great YouTube video.

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