My Experience on Evenity for Treating Osteoporosis

@xiam2024 can you share the reviews you refer to, or how to view them?

I have read and been told (by McCormick) that Evenity can affect "acquired immunity" (such as vaccines?) because it has an effect on B cells. I read a study somewhere on this that mentioned bone marrow edema. I was concerned about this but noone seems to be having any ill effects of that kind on this forum. The side effects people share mostly seem to be about pain.

My doctors were concerned about Prolia's effect on the immune system for me since I already have some autoimmune disorders. They haven't mentioned any effect from Evenity on the immune system. I believe it needs further research. The focus of research before it went on the market was on cardiovascular effects.

Hi, how are you doing on the drug? Have you had any major side effects? It costs $800 per month for the shot in Canada--what about there? xo Lisa

How are you doing now? Why did you choose Evenity over Tymlos or Forteo?

Due to hypercalcium level related to parathyroidism.
Had a parathyroidectomy ,
x1 in 2022. Reclast was not working so Dr said Evenity was only one left that does not stimulate parathyroid to release. More ca to bone. Only 3 shots left...yahoo

What has been your experience on Evenity? Like you, I have parathyroidism and my Dr is suggesting Evenity or Fosamax.

After shot # 6 began have pain at shot 9 OA pain severe but greater in neck and arms and left hip/ side. Only 3 to go...

By "OA", do you mean osteoarthrisis?

For those of you that are considering Evenity, here is my journey. My August 2023 DXA results were as follows: Lumbar -3.0, Left Femoral Neck -2.5, Left Total Hip -2.5, Right Femoral Neck -2.8, Right Total Hip -2.7. It took 10 weeks for BCBS to approve the Prior Auth (infusion center had to request it). The shots in the backs of my arms felt like rug burns for about 2 days. I felt slightly flu-ish within 6 hours of the shots, tired, low energy and headache. The next day I felt great except for the rug burns feeling. As the months went on, aching in my hips and thighs would wake me up. During the day I never felt achy because I moved around so much (walk 6+ miles per day). My DXA results from 11/29/24: Lumbar -2.5, Left Neck -1.5, Left Hip -1.9, Right Neck -2.3, Right Hip -2.3. Percentage improvements: Lumbar 8%, Left Hip 11%, Right Hip 8.5%. I’ve been awaiting an answer from BCBS (7 weeks so far) regarding starting Prolia. It’s been denied once. They said I have to try a bisphosphonate for a year. An appeal is in process. I’ve already passed Amgen’s recommendation to follow up with another drug within 3-5 weeks of Evenity. BTW, for those that need help paying for Evenity or Prolia, Amgen has a great Co-pay program. They are all extremely helpful but you have to be proactive for yourself on everything about this disease!

As kmichels writes one has to be proactive but it sure can be tough / confusing. In my case I wish I could get a second opinion as far as post-Evenity plans but as that means waiting months for an appointment that's off the table.

I am two months after my last Evenity year of shots and sounds like most people here were told to be concerned about losing their gains and go into another treatment soon after. I had my scan 6 weeks after and doctor appointment 7 weeks after (tried hard to get it sooner but no luck) and the endocrinologist insisted that gains remain for 3 months and seemed totally chill on the subject… seems we all are told such different things!

He’s encouraging me to go with Reclast saying 30% feel sick the first few days and then are fine and yes heart issues are rare but possible (didn’t mention the serious kidney issue risks) … or I could go with Fosomax but that it’s less effective. My dentist said Reclast is very potent stuff and better in general to take another option.
...I’m 64 and changes after Evenity (6 weeks later) were spine -3.7 to -2.4, hip -3 to -2.7, f.neck -3.4 to -3.1 and arm -2.2 to -2.4.

This doctor is in a well known big hospital. Years ago I was sent by the head of another department for a put in as urgent MRI — they saw me late at night that same day — for something all doctors said after was obviously unnecessary. It left me with a fear that I’m trying to get over that there’s incentive to push for whatever they can bill for and not necessarily what's best there. They get nothing from Fosomax as we get that from any drugstore. So I’m nervous that just as the department seemed lackadaisical about my appointment timing now might me about the treatment options.

Or maybe he’s on the ball with all of it and weighs sensibly risk vs gains?

I had a female endocrinologist initially who was detail oriented and got into the weeds with her concerns and explanations but she chose to go into another specialty. So wish I had her ear now!

But what to do next with confidence: I just don’t know.
It’s great to be able to read other’s thoughts and experiences though.

Maybe you could request a lower dose of ReClast. That is something I will be giving serious consideration to.