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.

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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@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 needles come with the pen with a prescription. If you need more you can get them at the pharmacy. I got a prescription but they are on Amazon. To be honest I don't bother with the disposal container but that comes with your first pen.

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@windyshores

The needles come with the pen with a prescription. If you need more you can get them at the pharmacy. I got a prescription but they are on Amazon. To be honest I don't bother with the disposal container but that comes with your first pen.

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Thanks! How do you dispose of the needles? Just your own container?

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@bluebonnet242

Thanks! How do you dispose of the needles? Just your own container?

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I put the cap back on the needle.

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Please let us know what your Dr. says. My Spine Dr. indicated I should go on
this after I had a DEXA scan. He cannot operate on me because of my bone
issues.. I read comments on package - seem very hard to get use to with all
issues. I hurt so much with my sciatic and ankle (L5 issues) I do not want to
hurt any more than I do.

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I would like to hear from people who were on Tymlos and if their bone density
increased and how long did it take.

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@karensm I had a 20% gain in spine (went from severe to borderline) and 9% gain in hip, in 18 months. Some of us tried full dose or half dose and then backed down to 1/4 dose and ramped up to get used to it. I am sensitive to meds but am so grateful for Tymlos. If you get any of the listed side effects, they tend to get better pretty quickly in my experience but I did ramp up the dose.

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@windyshores

@karensm I had a 20% gain in spine (went from severe to borderline) and 9% gain in hip, in 18 months. Some of us tried full dose or half dose and then backed down to 1/4 dose and ramped up to get used to it. I am sensitive to meds but am so grateful for Tymlos. If you get any of the listed side effects, they tend to get better pretty quickly in my experience but I did ramp up the dose.

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Thank you for responding, I am severely low, Dexa scan showed that. Spine Dr encouraged me to take it; if I did not get my bone mass up, he will not be able to operate should I need an operation if pain meds do not do the job. Taking Gabapentin & Baclofen only 2x day, still with leg, foot and sciatic pain 24 hrs. Use to play tennis 6 days a week, spent 2 days in the gym, now I walk with a cane and cannot do 250
yards - I am besides myself.

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@bluebonnet242

Are the Tymlos needles by prescription?

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

Thanks!

Jump to this post

I read our state regulations for needle disposal—it stated sturdy plastic container. I use an empty plastic liquid laundry detergent bottle with screw on top.

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@niifty1

I read our state regulations for needle disposal—it stated sturdy plastic container. I use an empty plastic liquid laundry detergent bottle with screw on top.

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My kid has type 1 diabetes. We have been disposing of needles for 30 years! You can use any container. With the pen needles, if the cap is securely back on, there is no danger to anyone, but yes, use anything. Coffee can, food container with lid, detergent bottle. And an official red container is provided with the first shipment of pens and needles.

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