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@daisymae53

Hi JK,
I am on Omeprezole and Prednisone. I also have been told that I need to take Tymlos. Can I ask how the Tymlos treatment is going for you? I'm a little nervous about the side effects. Did you have any? If so how long? Any suggestions for me would be appreciated. I understand that it is a new drug and there isn't a lot of people who take it so your response is valuable. I also understand that everyone is different with different medications and conditions.

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Replies to "Hi JK, I am on Omeprezole and Prednisone. I also have been told that I need..."

Hi, @daisymae53 Welcome to Connect!

I am almost done with Tymlos. I will finish at the end of the year or the beginning of 2023 depending on when my pen runs out. That will be 22 or 23 months of Tymlos, a month shorter than the full 24 months. I am doing that because my deductible is huge the first month of the year and my endocrinologist said that getting off a month or two early wouldn't make much difference.

The most common effect seems to be fluid retention in the belly area. I presume it must be a defense response of the body to all of the little injections. The injections are either painless or just a minor twinge. I hope my belly will go down somewhat when I get off of it. The other side effect that seems relatively common is achy muscles and/or joints. I find that comes and goes. For a brief period, it was bothering me a lot but now it is not. Initially I had no side effects, but the achy legs and puffy belly developed over time. A small number of people do have more difficult side effects but then they generally reduce their dosage and increase it as their body adjusts to Tymlos. I asked my endocrinologist if I should start low and she said no, and as it turned out I had no side effects initially so that was the correct way to go.

Many people do find it affects their blood pressure. Mine was slightly high and is not now so perhaps that's due to Tymlos.

I am no longer on either Omeprazole or prednisone. When I realized that Omeprazole could have an effect on your bones due to blocking the absorption of some nutrients I asked to be changed to something else so I am on Famotidine now which is the same as Pepcid AC.

Before you start make an in-person or phone appointment with a clinical advisor about injecting and also go to the Tymlos site and print out the diagram to help you keep track of where you have injected so you are not injecting in the same place all of the time. You can also get a free travel case for the pen with slots for 7 days of needles. If you do travel at all that's very nice to have.
JK