More Tymlos Titration Questions

BTW I was happy to start, and excited when it was delivered! Think of our poor mothers and grandmothers. We are lucky to have options like this.

I have to call my insurance company today to see if it’s been approved. To be honest, I’m afraid to start, so I apologize that I won’t be that much help in terms of titration.

That you felt a little “jolt” at 2 clicks tells us how potent this medication is, but I’m glad it wasn’t terrible for you.

Did your doctor recommend you start at a low dose, or did you make that decision on your own?

Can you elaborate on that “anti-inflammatory bang” you mentioned? What did that feel like for you?

I agree with you about the availability, and anecdotally, there are women who take Tymlos, get calcium through diet, and exercise regularly who have fantastic gains in under a year.

Thanks for your really positive post. Wishing you fantastic success!

Thanks.
The jolt I felt (more like having a cup of espresso) is exactly what my daily LD Prednisone feels like. Just get a little energy bang. So I felt like that, NBD for me.
The anti-inflammatory effect I felt was also like Prednisone, felt really good most of the day, especially the first four hours. It’s hard to explain if you don’t have autoimmune problems. I have 3 autoimmune conditions, one is RA. The pain from that can be bad, taking Prednisone gives huge relief. That’s just an example.
Anyway good luck to you. I’m quite glad to have something that will help, especially since I will be on Prednisone for life which does no favors to bones.

@ccps101 Currently, my rheumatologist is on an expedition of sorts as to whether or not I have an autoimmune condition.

I have an ANA titer of 1:16, speckled. All other inflammatory markers are normal. I have some lower back stiffness every now and then which I manage with exercise, BUT, a recent MRI also showed two benign Tarlov cysts on my spine, along with a concentration of blood vessels. She is watching that, with another MRI scheduled for April.

It’s all confusing (adding to my stress and sadness), and I think all of this feeds into my fear of taking the Tymlos.

Thanks again for your descriptive explanations. You’ve actually managed to make the Tymlos sound (dare I say) enticing! 😂

I am drawing from your strength and positivity today!

@beachesanddreams Autoimmune disease diagnosis can take time. Think I read an article recently that most patients go 4-5 years before getting proper Dx. Took me awhile, though my 3 came on in stages. The conditions do tend to run in packs. I remember when I first saw my current rheumy she said she was surprised it took so long for my second condition to be DX. My only advice there is if you don’t have good connection with your rheumy, keep looking. I finally ended up with a gem. I hope things go well for you on your path! I’m sharing my path here just based on MY experience. Everyone is different! Best of luck

@ccps101 I’m on my second rheumy, and I like her because she has the portal to communicate. She is in the same hospital group as my oncologist and cardiologist. It’s easier when everyone is all in one place.

I’m just finding that communication with this specialty is like pulling teeth. It’s very frustrating. While I understand it can take some time to get to the proper diagnosis, I find it is so difficult to get clear answers with regard to medication(s) especially.

When I went through cancer treatment, the communication was so much clearer, and that was 23 years ago!

I’m happy that you found the right fit for you. It really does make all the difference, and with several autoimmune issues, I know you have been through a lot.

Wishing you good health on all fronts! 🌺

My doctor recommends that I use Tymlos for severe osteoporosis in the spine. I have four autoimmune diseases that make infusions dangerous for me. The insurance (Emblem Health-GHI) rejected authorization yesterday. Has anyone also experienced denial by the insurance? How did you fight this and did you succeed?

If your TBS (trabecular bone score) is below normal you should be approved even without any fracture history. That’s how I was approved. The TBS is calculated from your dexa.

You and your doctor can appeal. Most people give up but appeals can be approved. Make sure Tymlos is on the formulary for your medication to start. If not, your doctor may want to see if generic Forteo is and if that will work for you. Always Work with the doctor on this.

I started Tymlos with 2 clicks as well, and a few days I upped it to 3, until within about 3 weeks I was up to the full dose. It isn’t the most pleasant feeling in the world, the faster heart beats for about 40 minutes (about 30 minutes after injection ), but I know it’s going to happen so I’m ready and inject in the morning so I can keep busy during that time. A lot of healthcare professionals don’t know or don’t approve of doing the click method but then I wonder why did they even put the clicks on there in the first place? And if it helps to ease into the drug then how could that be bad? Anyway that is my experience.