1. < Osteoporosis & Bone Health

Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

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

ymv | @ymv | Apr 10 9:58am
In reply to @bluebonnet242 "Are the Tymlos needles by prescription? Is the needle disposal container by prescription? If not, where..." + (show)
@bluebonnet242

Are the Tymlos needles by prescription?

Is the needle disposal container by prescription? If not, where have you gotten them from?

Thanks!

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The needle disposal container should come with the pen. However, each state has different rules about disposal. Here in Illinois I have to take my full container to the police station for disposal and they also have the empty red container available

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windyshores | @windyshores | Apr 10 10:48am

I am in no way recommending that people break state laws. The type 1 diabetes community has varied opinions on all this. No sanitation worker should be exposed to needles, period.

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tymlos666 | @tymlos666 | Apr 14 5:50pm
In reply to @windyshores "I have done two years of Tymlos with excellent gains. However, I could not tolerate a..." + (show)
@windyshores

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.

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How do u use 1/4 of a dose ….u click u till get to
80 then inject ……there r no other numbers ..
Pls explain bc I’m having a really bad reaction
But don’t want to give up yet !

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windyshores | @windyshores | Apr 14 7:03pm

@tymlos666 turn the pen slowly and it clicks. Just do two clicks. Stop at two then inject. Full dose is 8 clicks. If you turn it too fast you might not feel the clicks.

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1 reply
tymlos666 | @tymlos666 | Apr 14 7:57pm
In reply to @curious6 "Hi- How do you get the dose down? I've been prescribed Tymlos for severe osteoporosis but..." + (show)
@curious6

Hi-
How do you get the dose down? I've been prescribed Tymlos for severe osteoporosis but was told there's no way to lower the dose. I'm chemically sensitive and small and thin at 94 pounds.

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I’m in the same situation ..I’m 4’11 and weigh 104
Been using the full dose for 6 weeks then started having reaction …pain in feet and ankles as well as wrists
Dr said it isn’t from Tymlos ..I went off for 3 weeks
Then started again ….same pain ..
Don’t know how to decrease dose …dr said not possible
How do u do it?

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1 reply
tymlos666 | @tymlos666 | Apr 14 8:01pm
In reply to @windyshores "@tymlos666 turn the pen slowly and it clicks. Just do two clicks. Stop at two then..." + (show)
@windyshores

@tymlos666 turn the pen slowly and it clicks. Just do two clicks. Stop at two then inject. Full dose is 8 clicks. If you turn it too fast you might not feel the clicks.

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Thank u !!!!!.I will play with it tomorrow ….dr and manufacturer said not possible to reduce dose
Dr said ok to use after 30 days …it will just b weaker …( I skipped 3 Weeks )…hope the smaller dose works bc I’m in so much pain from this

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curious6 | @curious6 | Apr 15 4:23am
In reply to @tymlos666 "I’m in the same situation ..I’m 4’11 and weigh 104 Been using the full dose for..." + (show)
@tymlos666

I’m in the same situation ..I’m 4’11 and weigh 104
Been using the full dose for 6 weeks then started having reaction …pain in feet and ankles as well as wrists
Dr said it isn’t from Tymlos ..I went off for 3 weeks
Then started again ….same pain ..
Don’t know how to decrease dose …dr said not possible
How do u do it?

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I haven’t started using the medicine yet, but I’ve been told when you start injecting with the pen, there are 8 clicks. And you can stop earlier (even after the first click) rather than go all the way to 8 clicks.

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windyshores | @windyshores | Apr 15 6:36am

@tymlos666 the company is not going to suggest a lower dose and many doctors won't either, because they go by what has been studied. My doctor is at a major teaching hospital and uses this technique (ramping up) for patients now if they are having issues on Tymlos.

Get up to at least 4 clicks (half dose) as soon as you can and then push up to 6 if possible- over a couple of weeks for me. Then it took longer to get to 7, again, for me.

Anyone who uses the pen more than 30 days, which is going to happen for lower doses, can use it for longer but ONLY if it is kept refrigerated. If you travel, use a cold pack and wrap the box in a hand towel to avoid it getting too cold, and put it in the cooler. My doctor okayed using it for longer.

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windyshores | @windyshores | Apr 15 6:47am

@tymlos666 just noticed that you skipped 3 weeks. Has the box been in the refrigerator the whole time? Is it opened? You can call the providing pharmacy to ask, or Radius.

Do you have three boxes?

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kinglor | @kinglor | Apr 16 8:52am

I used Tymlos without side effects but after 24 months it did not improve my OP at all. Disappointed

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