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.

@artscaping

@curlylocks Thank you for responding. Before you give up on Tymlos please do just a tad more research. I also thought I would not be able to manage the financial commitment for 18 mos. And then a very nice lady explained....”Here’s the deal.”

Because Tymlos has a high cost, after one month at $500, you are already in the doughnut hole where you spend 2 months and $1000. Then you are completely covered for the remaining 9 months at $8.00 per month. So the average monthly cost is $131. That is more manageable. I am so far from an insurance guru...it just makes my head spin so allow a little leeway on my math skills. However, this works for me.

The same insurance person gave me contact information for 3 manufactures that offer financial assistance.

What gives me chills is that RX companies are increasing prices so much that as seniors we are being priced out of the market for the very medications we need for a decent quality of life. Just like the patent process, these pharmaceutical companies have to make a killing before generics take over and they have to start all over. A dilemma for sure.

Have a restful sleep tonight. Chris

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Thank you for your response. It is appreciated! On Wed., we pick up my first month's supply which is considered a "sample." I will be filing out papers to try and get help from Tymlos. We already have huge out-of-pocket medical expenses from my seeing a doctor who practices "functional" medicine. Yes, he is a chiropractor, but also uses magnetic and laser treatment w/supplements. Dr. Draper is currently treating me for severe degenerative disc disease in my neck. I was told by the spine surgeon they could not operate. If they did, eventually, my neck would be paralyzed. Since I have adverse reactions to pain meds, Dr. Draper was able to bring me out of deep pain without drugs. It took a number of months and I am being treated by him for well over a year. For us, it was a miracle. I am also receiving multiple epidurals for my back. Between all of these issues including a bad knee, you can imagine our medical bills are "sky high!" Although not a medical expert, I'm beginning to believe that my bone problem is connected to the deterioration of discs and joints. Not sure if my doctors are even thinking along these lines. My apology for getting to lengthy with my response. Again, thank you for your input!

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@cireland

Hi,
I started taking Tymlos in January. It really affected my appetite for awhile, but my body seems to have adjusted and I am now taking it every night without any problem. I give myself the shot (really easy) just before going to bed -- so some of the side effects like nausea (very slight) aren't a problem. I will have another bone density in January, so am hoping to see improvement. I am 79
Hope this helps.and good luck.

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Appreciate your response. Because I am in need of a knee replacement, my treatment should begin very shortly. We pick up my first month's supply of Tymlos on Wed., then a nurse will come out to show us how to give the injection. Since I have a sensitive stomach, I hope my reaction is as good as you have described about yourself. Hope your January bone density shows great improvement!

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@curlylocks

Do you have Part D insurance and, if so, who is your carrier?

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@curlylocks, @contentand well, Thanks for your replies. Yes, I have Medicare Part D insurance. My carrier is AARP through United Healthcare. This plan was chosen by my insurance representative. She has done a great job. This hitch in the get-a-long, a frequent happening for those of us in the over 65 years old group, requires some planning for the financial impact of a yet to be revealed diagnosis.

I checked with the pharmacist today and she indicated that as far as she knew, my math was on track when calculating the average monthly cost. We shall see.

May you have everything that a joyously sunny day can bring. Chris

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@artscaping

@curlylocks, @contentand well, Thanks for your replies. Yes, I have Medicare Part D insurance. My carrier is AARP through United Healthcare. This plan was chosen by my insurance representative. She has done a great job. This hitch in the get-a-long, a frequent happening for those of us in the over 65 years old group, requires some planning for the financial impact of a yet to be revealed diagnosis.

I checked with the pharmacist today and she indicated that as far as she knew, my math was on track when calculating the average monthly cost. We shall see.

May you have everything that a joyously sunny day can bring. Chris

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@artscaping That’s the same as the Medicare D I have unless they have multiple plans you can choose from. I don’t recall, that seems like an eternity ago.

I hope you are having a wonderful day too. I can’t complain about the weather here at all, beautiful day. I’m on a lounge in our screened porch.
JK

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Thanks, Chris, for the information on your health insurance. Hopefully, when I renew my Part D, there will be a supplement that is more cost friendly.

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There is a Tymlos Assist program available. I'm still in the paperwork portion of it and will see what my cost are soon. My Doctor has given me monthly samples up to now. This will be my third month with no side effects so far.

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I have just taken my 3rd dose, I have found that by take using a lidocaine patch before the injection really helps with back spasms. Do not sit down for the first 30 minutes.

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@anitalee541

I have just taken my 3rd dose, I have found that by take using a lidocaine patch before the injection really helps with back spasms. Do not sit down for the first 30 minutes.

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Hello @anitalee541 and welcome to Mayo Clinic Connect. Thank you for joining the discussion.

Were you advised to use the lidocaine prior to the injection and not to sit for the first 30 minutes by your doctor?

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@cireland

Hi,
I started taking Tymlos in January. It really affected my appetite for awhile, but my body seems to have adjusted and I am now taking it every night without any problem. I give myself the shot (really easy) just before going to bed -- so some of the side effects like nausea (very slight) aren't a problem. I will have another bone density in January, so am hoping to see improvement. I am 79
Hope this helps.and good luck.

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I was put on Tymlos because I tested positive for osteoporosis after having laminectomy and fusion from T11 to L5 which resulted in pseudarthrosis. I had to have another surgery with hardware removed and replaced with larger screws and extended into my pelvic bones. They did not test my bloodwork for almost five months from the start of taking Tymlos and then when they got the results, I was sent to emergency with hypercalcemia. I had to spend the night there flushing out the excess calcium in my blood with a saline solution. I was told that my heart could have stopped and I could have died. (All thanks to negligent bone health NPs) Be cautious!

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@artscaping

@curlylocks and @cireland Good afternoon, wow, I haven’t found anyone on Tymlos. Even my pharmacist said I was the first in this area. Would you be comfortable sharing the reason for choosing this osteoporosis medication. Mine reason is. that I had a severe reaction to boniva and could not use anything with similar ingredients. I am finishing week four and still have just a teeny weeny bit of nausea. I take mine in the a.m. because I am worried that I will fall asleep and not remember. I have been known to do that. And another question....did you get this through your regular RX insurance? Did you explore Canada? Hope you both are having a lovely day.

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I had the same reaction to Boniva and all similar medicines. Even taking Calcium affects my jaw bones. That is my concern with Tymlos? Does anyone know of any jaw problems with taking it?

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