Evenity Side Effects

Thank you @susanfalcon2. Same side effects but much less intense and very tolerable. Burning tightness across lower chest, weird dreams. If I can do one shot I can do Evenity longer term. I looked into doing it at home so I could customize dose!! I feel like Goldilocks: one syringe is too little and two is too much. My docs give me reduced dosages of everything. Hoping doc is on board.

My CTX after 2 years Tymlos and one set of Evenity injections was 145 (reference 152-858 for 70+).

On 2/22/20 it was 324, before Tymlos (but not fasting and 10:30am)
The others were fasting and all around 9 am:
5/23/23 165 (18 month of Tymlos)
7/15/23 186
1/26/24 145

Doc said studies showed no need to test CTX before transitioning to Reclast or other bisphosphonate. She convinced me.

I am going in for second set of Evenity injections today. The dose for a 150lb woman is 3mg/kg = 210mg. I weigh 104 so about 2/3 that study weight. It makes sense to me that my dose should be around 140mg. One shot is 105mg. I have already told them and gotten agreement that I can have a pause between shots to see how I am reacting this time. If I react again, I will decline the second shot. This would be a little over 2mg/kg and still help but effectiveness might be reduced by 1/3.

Hi windyshores, do you happen to have P1NP data that go with your set of CTx data? I'm very curious how they'd change together on an anabolic like tymlos, if you don't mind sharing.

Thank you very much for sharing your experience along the way. Undoubtedly you've helped lots of people here.

All the best!

Thank you @susanfalcon2. Same side effects but much less intense and very tolerable. Burning tightness across lower chest, weird dreams. If I can do one shot I can do Evenity longer term. I looked into doing it at home so I could customize dose!! I feel like Goldilocks: one syringe is too little and two is too much. My docs give me reduced dosages of everything. Hoping doc is on board.

windyshores,
I had my 9th set of Evenity shots yesterday and seem fine. They always ask me a lot of questions including whether I’m having “aches and pains “. Haha.
I am aware that there may be ‘ghost side effects’ that I/we are unaware of.
I am grateful that I tolerate the drug so far and look forward to a dexa in May.

I pay $472 for each set of injections. I wonder if I can pay half now and get the other half in 30 days! Very mild side effects with one shot. Once my kid's surgery is over and they are recovered, I will probably do the full dose next time. My doc is fine either way. He said one shot is less effective, but has effectiveness, which I knew. I figure 10% vs 16%.

@mayblin I do not have a P1NP during the time Tymlos was actively bone-building. I have a P1NP before treatment and two after 18 months on Tymlos. I am waiting for P1NP results after one month of Evenity and expect it to be high. This test can take weeks to come back. My P1NP's basically showed Tymlos was no longer working to build bone, but I stayed on it for maintenance for few months while deciding next steps. I had a 20% gain in spine and 9% gain in hip so earlier in treatment it was quite potent but I don't have testing for that period. Here are my results:

2/22/20 54 (ref. 16-76) this was not fasting and 10:30 am- before Tymlos

Tymlos 6/21-12/23

5/23/23 40 (ref. 16-96) fasting, 9 am
7/18/23 35 fasting, 9 am
Evenity 12/26/23
1/26/24 ???? fasting, 9 am
Evenity 1/2 dose 1/30/24

@windyshores thanks a lot for posting your results. I've been reading and comparing yours against published data. Although your P1Np at 'peak' wasn't captured, most likely it had and the later trend fit what was described. Your CTX is a bit hard to interpret. The baseline, w/o fasting and timing factor was at 324, which could be adjusted higher presumably as your true baseline considering these factors, right? More puzzling is the drop after 2 yr tymlos. Am I reading the wrong way? Did any of your consulting doctors help you make sense of these data?

I realize that btms are not uniformly reliable among population. For some ppl they give good signals while for others the data could be so variable that it's hard to interpret. There was a physician who had a few non responding patients ended up with improved dexa.

@mayblin whatever the reason, I was pleased with a lower CTX. I wish I had fasted for that baseline.