Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

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

@hopefullibrarian

Thank you for the information.
To answer your question, I'm 53, so not on Medicare.

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@hopefullibrarian I am not knowledgeable on this since I am older, but there have been posters on this forum who were too young for Medicare, who had coupons or other discounts not available to us older folks. Maybe someone else could enlighten you or you could post?

ps I believe it is true that Radius Assist is not available for those under 65 with commercial insurance-?

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@hopefullibrarian

So glad to hear that you're getting Tymlos treatment. I'm amazed at how effective it is for some people, and hope it is for you too. Please share your next DEXA results when you get them.

After learning about the available treatments, I realized I need to build as much bone as I can while working with specialists to figure out what is out of balance and causing my rapid and early bone loss (I'm 53). Tymlos side effects, if not too extreme, seem worth enduring in order to build bone rather than just trying to maintain what you have.

Because my one and only Prolia shot caused rapid hair loss, I started taking collagen and using a shampoo that slows hair loss while stimulating new growth. It seems to be helping, but I've only been using both for a month now. Time will tell.

I look forward to reading updates about your progress.

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What’s the name of the shampoo. Just today I started collagen. I like yo buy the shampoo. I started using Tymlos last January I am thinking of stopping it because of my hair loss I wish my health dr would had told me about possibly hair loss I would have taken collagen 10 months ago. I am also losing weight but for me it was a good thing. I can’t remember when I lost my voice but it’s been almost two weeks and my voice is coming back. I don’t know if that is a side effect or weather change. Since I started taking Tymlos I can’t shake the thought of the side effects (black box)

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I'm using Pura d'Or hair thinning gold label shampoo. I bought it directly from their website (https://purador.com/products/original-gold-label-shampoo).

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@bauersaul

What’s the name of the shampoo. Just today I started collagen. I like yo buy the shampoo. I started using Tymlos last January I am thinking of stopping it because of my hair loss I wish my health dr would had told me about possibly hair loss I would have taken collagen 10 months ago. I am also losing weight but for me it was a good thing. I can’t remember when I lost my voice but it’s been almost two weeks and my voice is coming back. I don’t know if that is a side effect or weather change. Since I started taking Tymlos I can’t shake the thought of the side effects (black box)

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Hello - I started tymlos about 6 months ago - I also have been experiencing loss of appetite and weight loss since starting tymlos. I had my calcium levels checked to make sure it was not from high calcium levels ( levels are still normal). While loss of appetite is not a usual side effect, there have been posts concerning it. I basically find food uninteresting ( I can’t believe I am even writing that) so I have been planning my meals and just eating it. I understand your concern about all the side effects. My bone scan scores were severe so there is no other choice for me since I want to prevent a fracture which will surely impact my life - it’s hard

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@windyshores

@hopeful librarian they seem to have ended Together with Tymlos in favor of Radius Assist.

The Tymlos site only has clinical educators now.
Your dedicated Clinical Educator is here for you
While taking TYMLOS, you will have access to a dedicated Clinical Educator. They'll start with 1-on-1 injection training and be there for you throughout the duration of your treatment to offer support and answers about taking TYMLOS.

Call to a Clinical Educator 1-855-730-8591

Radius Assist covers cost for those on Medicare plans with some exceptions listed here: Are you on Medicare?

https://radiuspharm.com/radius-assist/

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I got Radius Assist for $7,500 for 12 months. The reason I qualified is that I have private insurance. It had nothing to do with income so if anyone has private insurance I suggest you look into it.

Tangent....However....my insurance plan (Florida Blue) did not apply the cost to my deductible so it literally had no effect on my out-of-pocket expense. The only effect was that Florida Blue got a break in cost, but it was not passed along to me.I understand that 33 states have passed legislation against insurance companies not applying consumer coupons but Florida is not one of them.

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@kjoy

I got Radius Assist for $7,500 for 12 months. The reason I qualified is that I have private insurance. It had nothing to do with income so if anyone has private insurance I suggest you look into it.

Tangent....However....my insurance plan (Florida Blue) did not apply the cost to my deductible so it literally had no effect on my out-of-pocket expense. The only effect was that Florida Blue got a break in cost, but it was not passed along to me.I understand that 33 states have passed legislation against insurance companies not applying consumer coupons but Florida is not one of them.

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I was wondering how that works regarding deductibles, and suspected any effort on my part could potentially be futile.
Do you know where I can find more information about which states have passed legislation that protects the consumers in such cases?

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@bauersaul

What’s the name of the shampoo. Just today I started collagen. I like yo buy the shampoo. I started using Tymlos last January I am thinking of stopping it because of my hair loss I wish my health dr would had told me about possibly hair loss I would have taken collagen 10 months ago. I am also losing weight but for me it was a good thing. I can’t remember when I lost my voice but it’s been almost two weeks and my voice is coming back. I don’t know if that is a side effect or weather change. Since I started taking Tymlos I can’t shake the thought of the side effects (black box)

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@bauersaul there is no black box warning for Tymlos. The one about bone cancer was lifted since not a single human has gotten bone cancer from Forteo or Tymlos, I read.

I find the info from others on insurance and Radius Assist to be confusing. I am sure Radius can give info.

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Thank you for the information I will call radius. God Bless

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@hopefullibrarian

I was wondering how that works regarding deductibles, and suspected any effort on my part could potentially be futile.
Do you know where I can find more information about which states have passed legislation that protects the consumers in such cases?

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I Googled it. Here is what I found this morning...

Here is an explation. https://old-prod.asco.org/sites/new-www.asco.org/files/content-files/advocacy-and-policy/documents/2021-AccumulatorsPolicyBrief.pdf

And here is a section of this page: https://www.crohnscolitisfoundation.org/managing-the-cost-of-ibd/hot-topic-copay-accumulator-maximizer-programs#:~:text=As%20of%20summer%202023%2C%2019,as%20well%20as%20Puerto%20Rico.

"Some states have banned copay accumulators. As of summer 2023, 19 states have banned copay accumulators: Arizona, Arkansas, Colorado, Connecticut, Delaware, Georgia, Illinois, Kentucky, Louisiana, Maine, New Mexico, New York, North Carolina, Oklahoma, Tennessee, Texas, Virginia, Washington, and West Virginia, as well as Puerto Rico. However, the laws may not apply to the newer copay maximizer programs.
If you live in a state that has NOT banned copay accumulators, be an advocate:
Contact your House Representative
Contact your state's insurance department
Call your insurer to ask questions
Tell your employer! Your employer might not be aware they signed up for this program or how it negatively affects their employees."

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Thanks for the links.
Fortunately for me, I live in one of the 19 states that have banned copay accumulators, though it looks like the the copay maximizers are still allowed everywhere.
Before going through anymore effort of seeking out and applying for assistance programs, I'll scour my plan details for the intentionally obfuscating names that the insurance companies use--"Coupon Adjustment: Benefit Plan Protection Program," "Out-of-Pocket Protection Program, “Copay Leveling Program.”

In the short time that I've been participating in this forum, I have learned far more than I ever could on my own. I am truly grateful that we have a place to share information and experiences.

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