My Experience on Evenity for Treating Osteoporosis

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.

@spiderplant I have a lower dose but more frequently- of Reclast. I have kidney disease and get IV hydration (but really two big cups of water are the same) and an infusion over an hour. The first time I had a fever and was fluish but have been fine since. I react to everything but Reclast has been fine.

My doctor wanted me to have Reclast before two months was up after Evenity but I only did 4 months of Evenity (after Tymlos) so the antiresorptive effect of Evenity for me may have been lower.

@yogalisac I am in the U.S. I have Original Medicare. Medicare Part B ($174.70/month with an annual deductible $240)) and my supplemental insurance ($160/mo) paid the full price of $5000 (yikes!!) for the Evenity each month. I pay out-of-pocket for my Traditional (also referred to as Original) Medicare Plan and I easily meet the deductible every year. Insurance is a mess in the U.S. as you probably know. With Original Medicare I do not need pre-approval.

$800 per month is a lot. Evenity is still at the propriety phase with no generic on the market so the medication is expensive.

I shared a lot of information but does this answer your question? What province are you in?

You may have explained before, but why did you only do 4 months of Evenity?

@ripley I had already done 2 years of Tymlos and initially thought that if I had side effects on Evenity I would try to do the early months when anabolic action is stronger. I went on Reclast after Evenity. I did have some neuro symptoms (chest and forearms burning) on Evenity but I mainly wanted to top off Tymlos with a burst of P1NP and save 8 months of Evenity for later. This is NOT an approved protocol.

A study was posted about doing 6 months Evenity then going on Reclast rather than doing the last 6 months of Evenity, since both are anti-resorptives. It is still ongoing.
I read that the initial pre-market expectation with Evenity was that it would be anabolic the whole time and the fact that it isn't, was a surprise once it went on the market.

I saw another study proposing short bursts of Evenity between other drugs, like Reclast. All of this research is ongoing since Evenity is so new (2019).

My friends who did the full year had remarkable gains on Evenity. I have a DEXA in April but will never know what those 4 months did since I have been on Reclast. My doc says they don't really know how Evenity works (it inhibits sclerostin of course). IF I were a newbie and doing my first drug I would do the full year.

I am in this for the long term with 7 spinal fractures. Some may do Evenity, a year or two of Reclast and be done. That is not me! Again, most of what I have done is individual, not established protocol and since I have kidney disease, lupus and afib my doctors tend to be flexible with me.

I have severe osteoporosis (-3.9 in spine). I can't take Forteo or Tymlos due to parathyroid issues. My endocrinologist said I could either try Fosamax for a year or so and if that didn't improve my scores, he said I could then try Evenity. He didn't think a year or so on Fosamax would lower the effectiveness of Evenity very much. The other option is to start with Evenity, followed by Fosamax.

If I take Evenity first, followed by 5 years on Fosamax -- what do I do after that? Will I lose any gains from Evenity if I don't continue on something? There really isn't another drug that I can take after that, as far as I know.

Also, you mentioned in another post that "Reclast and Fosamax, can be visualized as coating bone". Do you know how Evenity works to improve bones, and what is the quality of the bone improvement? Thanks.