Evenity….stopped after the first set of injections…

Since this Discussion started with Evenity I thought I'd answer the questions that have come up regarding Medicare. I have Traditional Medicare and do not have a Medicare Advantage Plan.
Evenity must be administered at an infusion center or hospital/clinic. For that reason, Evenity can be billed as Medicare Part B (outpatient such as going to your doctor's office) and not as Part D that you get from the pharmacy and that you administer to yourself. I don't know how it works with other medications such as Prolia or Tymlos.

It can be really difficult to figure what is covered, what your co-pay will be, and what is not covered. It's best to call or write your insurance company. I do know that if Medicare has approved coverage of a medication that all Medicare Advantage programs and Part D prescription plans must include the medication in their coverage. However, the costs will differ between plans. That's where it can get confusing.

Just an FYI. I was introduced to GoodRX by a pharmacist. I always check GoodRX when I get a new prescription because sometimes their co-pay is less than my Part D prescription plan. It's so crazy.

For my first injection of Evenity, I had immediate chest tightness along the bottom of my diaphragm, a sensation I have never had. It persisted for 4 days in an intense form, and on day 8 I still feel it at times. I also had pins and needles in hands and to some extent all over, and anxiety, insomnia. Of course my doc asked me if I was having anxiety or a panic attack. NO!!!!!

I read that exposure to Evenity varies with weight and I am small, thin and have asked about a reduced dose. I am also sensitive to polysorbate 20, one of the ingredients. So that may have been a "reaction" rather than a "side effect."

In the last 2-3 days, according to the drug insert, the Evenity action peaked. Half life after three sets of injections (when it reaches steady state) is 12.8 days so half will be gone so by Sunday half will be gone. My kidney function isn't great so I scheduled next injection for 5 weeks, not 4.

Now I want to find out, just in case, whether one injection does any good or at least holds me steady after stopping Tymlos. And how much of a break I might take before doing Reclast. I would love a month of no meds. But don't want to lose any gains. I might see my second opinion doc who does CTX and P1NP.

I have awhile to decide on that second injection but leaning towards no. I had excellent gains on Tymlos and Evenity may not even have that much left to do.

These decisions are complicated. I am willing to suffer reactions and side effects that are not dangerous. That is how awful fractures are and I have had a few!

Would you mind sharing your gains on Tymlos?

20% spine, 9% hip. Spine went from -3.3 to -2.5, borderline. Hip -3.6 to -2.9. Femur neck -4.1 to -3.6. Femur neck is still a concern.

For my first injection of Evenity, I had immediate chest tightness along the bottom of my diaphragm, a sensation I have never had. It persisted for 4 days in an intense form, and on day 8 I still feel it at times. I also had pins and needles in hands and to some extent all over, and anxiety, insomnia. Of course my doc asked me if I was having anxiety or a panic attack. NO!!!!!

I read that exposure to Evenity varies with weight and I am small, thin and have asked about a reduced dose. I am also sensitive to polysorbate 20, one of the ingredients. So that may have been a "reaction" rather than a "side effect."

In the last 2-3 days, according to the drug insert, the Evenity action peaked. Half life after three sets of injections (when it reaches steady state) is 12.8 days so half will be gone so by Sunday half will be gone. My kidney function isn't great so I scheduled next injection for 5 weeks, not 4.

Now I want to find out, just in case, whether one injection does any good or at least holds me steady after stopping Tymlos. And how much of a break I might take before doing Reclast. I would love a month of no meds. But don't want to lose any gains. I might see my second opinion doc who does CTX and P1NP.

I have awhile to decide on that second injection but leaning towards no. I had excellent gains on Tymlos and Evenity may not even have that much left to do.

These decisions are complicated. I am willing to suffer reactions and side effects that are not dangerous. That is how awful fractures are and I have had a few!

So very sorry to hear about your reaction to Evenity. After your success with Tymlos, it must seem discouraging.

I think you might be on to something about smaller, thinner (and I include older) people and dosage issues. On what population are these (and other) meds tested?

Could you refresh my memory about why you discontinued Tymlos?

@rjd I did the full two years of Tymlos. The two year limit has been lifted for Forteo but not Tymlos as yet, since it is newer. I actually did 26 months while I waited to decide next steps. The Tymlos was no longer building bone but was maintaining.

My doc's protocol is Reclast after Tymlos but I convinced him to allow me to do Evenity for further bone growth, especially femur neck. I did have excellent gains on Tymlos.