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.

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@cireland

I chose Tymlos because it is one of the two drugs that actually build bones. I chose it over Forteo because it is newer and I hope a bit better; It is taken for 18 months vs. 2 years on Tymlos and it is less expensive that Tymlos. My first 90 day supply cost $1780 -- with my insurance. The 2nd 90 day supply cost $680 -- I don't know why my cost changed, but I am grateful.

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How have you been on Tymlos med? We are in 2025 and just curious where you are now and how side effects were etc. I am trying to decide between Forteo and Tymlos

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@georgette12

I started tymlos 6 weeks ago. I also have top of the chart bone density issues. I'm 75. I pay 8.60 month thru Medicare

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how has using Tymlos helped? Did your DXA scan improve?

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@georgette12

I don't have side effects and I take this daily because this rx will hopefully rebuild bone mass.

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How are you now? Did your DXA scan improve and what are you doing to maintain your gains in bone if any? Did you ever get side effects using Tymlos? Trying to decide if I should start.

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This is the first I have heard of bone being brittle that you build after Tymlos drug. Is Forteo the same? I have heard bone is stronger after you improve your bone density from these drugs??

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@curlylocks

Hi,
I was on Tymlos for 21 months. My decision to choose Tymlos was not an easy one. However, my doctor told me I had two choices, bad and worse! The bad choice was to take the shots and risk short and/or long term side effects. However, it would lengthen my lifetime. The worse choice was not to take Tymlos and die from a fall! At the time, I was 72 and felt I had a lot more life left in me. Initially, after a bad reaction, I had to stop taking Tymlos for three months. Then, the next three months, I eased into taking the shots every other day to make sure there wasn't any further side effects. For the next 18 months, my husband gave me the shots in a specific area of the abdomen required by Tymlos. That was difficult because the shot could not enter a scar and my stomach was badly scared from a breach pregnancy/birth and two surgeries. Although it was not an easy 21 months, due to new side effects, I finished taking the shots earlier than recommended. I have been on Prolea (two shots every six months, at the hospital) for six years. My score dropped from -4.8 to 2.3. The first year, Tymlos sent me a pen every month at no charge. Then, they refused to continue the treatment for the second year. Thankfully, through Wake Baptist Medical Center, I was able to pick up a sample pen once a month until my treatment was completed. At this time, I have no further side effects. I do hope that this continues for the rest of my life. Given all the complications, would I do it again? In a heartbeat! I hope this information helps you and others who have this challenging decision to make. God bless you and I wish you the best!

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I wish I had been told to try taking it every other day. My side affects were so bad after two weeks I decided I couldnt live like that and quit. Waited several years. Now just started Reclast IV once a year for 2 yrs. My numbers started like yours. T-4.8. Actually before the Tymlos it was T-5.2 but he said the change was due to arthritis in the spine somehow makes the DEXA look better than it is. Dont understand that but that is what hs said. Hope I can tolerate the Reclast. I had it a few years back & had a month of flulike symptoms. Only 5 days now but so far no problems.

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@jbrooks

I have heard from this site that people seem to have less side effects on the Forteo than Tymlos but when you read about the two on fact sites it says Forteo has more side effects and is a man made peptide, where Tymlos has less listed side effects but is a natural occurring peptide - so I though it may have easier reaction on the system but so many people seem to be suffering on Tymlos vs Forteo - both harsh but just what I am reading - have you any thoughts on this as I am trying to decide which one to start.

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I had significantly more side effects on Forteo than Tymlos. I quit taking Forteo because of them. I am now on Evenity.

Forteo is a synthetic version of human parathyroid hormone (PTH) while Tymlos is a synthetic version of a parathyroid-related hormone peptide.

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I just started 2 weeks ago. Started on 4 clicks take it at 9:45pm. So far a little nauseous after I take shot but it goes away in a few minutes. I will advance to entire dose next week. Hoping for the best as I don’t do well with drugs.

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