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Evenity after Forteo or Tymlos?
I would love to hear from anyone who followed Forteo or Tymlos with Evenity. My endocrinologist does not seem to know about this possibility, or perhaps he is bound by studied protocols. I would like to share any studies with him, as well as personal experiences on this forum. He is a great doc so not really questioning him, but he also listens to me and what I want.
I am finishing 18 months of Tymlos (partial dose) with gains so good they are hard to believe- almost 20% for spine and almost 9% for hip. Doc wants to do a "test dose" of Reclast at 1 mg (usual dose is 5 mg). That lasts 3 months and after one month I am to tell him what dose I want next, depending on how I tolerate the 1 mg: I can have 3mg, 4 mg, whatever I want to request. I will be monitored over the next years and able to take a break if things look good.
The thing is, my hip is still at -2.9 and my spine at -2.5 so I wonder if a year of Evenity would get me to osteopenia. To be honest, I am pretty happy with my results ( previous scores were -3.7 at spine and -3.3 at hip, with several spinal fractures). Maybe Reclast will be good enough.
Let me know if you are doing Evenity after an anabolic, via PM or on this thread. Thank you!
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After 12 months, you should have seen some gain. I assume this doctor didn't order blood tests along the way to monitor P1NP and CTX? I'd be hesitant to do this for another year if it's not working for you.
Did you have a DEXA before you started? And you're waiting for the report on the latest scan?
That’s correct - no bloodwork was done during the 12 months .
She ordered a blood test to be done next month .
And yes a DEXA was done when I started Tymlos .
When I get the new DEXA results can I tell you what the change was ? If any ?
And I’d like to know what you /anybody with knowledge thinks !
@dmshope Are you through with your course of Evenity? Results? Why did you have to be on Actonel for 6 weeks before transitioning to Evenity? If the answer to that is covered in the study you included I missed it. Thanks!
I am just finishing my course of Evenity after 18 months of Tymlos. My Dexa is in two weeks, so I don't know yet whether there is progress. I'll check in again then. My provider suggested Reclast after Tymlos because she said that insurance won't generally pay for the Tymlos/Evenity sequence, but as it turned out there was no problem getting approval.
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1 Reaction@janism did you go directly from Tymlos to Evenity? No bisphosphonate in between?
@windyshores did you ever get your doc to agree to the Evenity after Tymlos?
@cat1203 Can't do bisphosphonate. I tried it before Tymlos and had terrible GERD.
I didn't do well on my first year of Tymlos. They offered me Eventity. I am finishing up the second year of Tymlos in 2 months and will take the next DEXA and figure it out. The plan was to return to the RECLAST (I had one infusion before starting). IF my DEXA results are great, I might ask for one more year on Tymlos because I was injecting in the thigh the first year and only had a 1.6% positive change, when I should have had a 6.8% positive change. I felt that injecting in the thigh was the reason I didn't get the great response in the first year of Tymlos.
Make sure you are testing on a DEXA with TBS to be the most accurate year to year. My P1NP/CTX numbers were right in line.
@loriesco "I felt that injecting in the thigh was the reason I didn't get the great response in the first year of Tymlos." What is the evidence for this? Some people do not respond well to Tymlos, period. 6.8% is just an average. You had 1.6%, I had 15%. It's a wide range. Hopefully you did better in the second year.
I wish you luck getting the insurer to cover a third year of Tymlos. Their default position is two years for Forteo and Tymlos, and they'll have to be convinced by a doctor that a third year is necessary. You know how insurers can be frustrating.
@njx58 wow 15% is great! Did you do the DEXA with the TBS? Otherwise, I don't put a lot of stock in the consistency of DEXA results after my own experiences with regular DEXA.
My doctors felt that I should have had a much better result in the first year - when the MOST gains are made.
There is no evidence of the thigh being the issue. After MUCH intense investigation I could only get "it was never tested so we don't have any comment" from the pharmaceutical manufacturer and a deer in the headlights response from UCSD who told me I COULD do it. That's why I am excited to see what year two brings!
I don't think I will have any problem with insurance. I never had. If there is a reason to write a prior auth I will ask that they do that. However, the NP already indicated they were interested in having me move to Eventity to see if they can stimulate a better response. We'll see when all this comes together at the end of August!