Evenity

I have also been wondering about this. I think I have bradycardia but it seems doctors still want me to start the shots. I am scared to death!

Thursday Jan 23, 2025

update Evenity

After more than a year of treading on water of indecision:
I have decided not to take Evenity: Two main reasons.
One is some of the reports I have seen on the web: which I am linking
here.
And, as an older person, there are, I think,
cardiac risks that might not be foreseen,
For example as we age, we all get Arteriosclerosis, can get strokes and so on.

Please realize this is my decision, my choice and I am not
impinging, influencing anyone’s decision.
If you have taken, or are taking this drug, you have
done your due diligence and found that this path was the
right one for you.

I will link to the studies that have helped make up my mind.

I would like to take a few minutes of your time:
to thank the participants who have presented their skepticism
so clearly and articulate
of Big Pharma and the doctors and specialists we see: many of
whom are
not focused on the well being of their patients, but overly
dependent on quick fixes, namely pills.
That is the culture we
live in today. Unfortunately. And it will take brave souls
who highlight these to make a change. Amen.
Some of you know about Martin Shkreli - raising insulin meds from $13.50
to $700.
He was sent to jail, had to pay some fine, he's out of jail now,
was left with a personal fortune of approx 70 Million.
His lawyer is trying to reverse a
condition whereby Shkreli cannot return to the pharma world.
He is working as a software engineer somewhere.

@windyshores
Also, I would like to use this space to say thank to @windyshores
for her kindness and empathy that she shows especially to
new participants, and to others.
In spite of her many health challenges, she exemplifies graciousness
and patience in her communication - which sometimes
is not matched in kind by posts she has lately received.

Here’s link to one study from the Australian Government 2023
https://www.tga.gov.au/news/safety-updates/new-warnings-romosozumab-evenity-cardiovascular-risks
2019 Evenity is not approved: July 1, 2019
https://pharmaphorum.com/news/chmp-says-no-to-amgens-osteoporosis-drug-evenity
“In its assessment, the advisory committee said “as it was unclear why the medicine
appeared to increase the risk of heart and circulatory problems, and there was no
obvious group of patients in whom the risk of these was lower, measures to reduce
the risk could not readily be put in place.”

and
“The CHMP was also not convinced about the efficacy of the drug in
patients with less severe osteoporosis, saying the “benefit was not so convincing”
in this group.”

A Quick Turn About - a few months later Oct 19, 2019
https://pharmatimes.com/news/chmp_u-turn_for_evenity_1313762/
this next one is FDA
https://pharmaphorum.com/news/at-long-last-amgen-ucb-score-fda-okay-for-evenity
Amgen and UCB finally have FDA approval for osteoporosis drug Evenity, two years after
it was turned down by the regulator because of safety concerns.

BTW Amgen will start losing Evenity patent in the U.S.
in 2025… earlier in Europe

Eliminating Evenity, puts me closer to deciding on another anabolic
drug.

I have ‘severe osteoporosis’ - numbers that most health professional
have told me they have never seen.
It’s taken me a over a year to not panic, and try to arrive at what I
think I should be doing.
I’m almost there.

My cardiologist googled it. I had to tell him that I had already googled it. The cardiologist may not know much about osteoporosis drugs. (And endos may not know much about the heart!) Sometimes the pharmacist who dispenses it can be helpful in my experience. Or maybe cardiologists know more now that Evenity has been out longer!

Lots of pain at the injection sites and minor swelling across my entire abdomen the same day. Barely slept. Horrible! I took Tylenol, iced the injection sites and massaged the areas which offered me some relief. I never have headaches and had a throbbing headache for three days. My shoulders severely ached on both sides for six months.

I will be taking my 8th treatment. Very little side effects except some stomach bloating and a little weight gain. Other than that, nothing else. With Fosamax I started having Gerd and developed some ulcers only after 2 doses. For me, Evenity a much better choice.

Evenity is not like Reclast in that there is not usually, as I understand it, an "acute phase" (immediate) reaction but instead, side effects tend to happen at the peak of action, around one week. The tylenol and antihistamine would seem to address reactions similar to the acute phase reaction that happens with Reclast. Is anyone having that with Evenity?

I did have an immediate reaction that was more akin to allergy, since I am sensitive to polyethylene glycol, which is in Evenity (and some vaccines). This, I was told, was more than unusual. Right after the shot I got strong burning sensations in my tummy and chest, which did not recur when I had shots in my thighs. I differentiate that from some effects I experienced 7-10 days after the Evenity shots.

So are people having an acute phase reaction to Evenity that explains the tylenol and antihistamine?

Thursday Jan 23, 2025

update Evenity

After more than a year of treading on water of indecision:
I have decided not to take Evenity: Two main reasons.
One is some of the reports I have seen on the web: which I am linking
here.
And, as an older person, there are, I think,
cardiac risks that might not be foreseen,
For example as we age, we all get Arteriosclerosis, can get strokes and so on.

Please realize this is my decision, my choice and I am not
impinging, influencing anyone’s decision.
If you have taken, or are taking this drug, you have
done your due diligence and found that this path was the
right one for you.

I will link to the studies that have helped make up my mind.

I would like to take a few minutes of your time:
to thank the participants who have presented their skepticism
so clearly and articulate
of Big Pharma and the doctors and specialists we see: many of
whom are
not focused on the well being of their patients, but overly
dependent on quick fixes, namely pills.
That is the culture we
live in today. Unfortunately. And it will take brave souls
who highlight these to make a change. Amen.
Some of you know about Martin Shkreli - raising insulin meds from $13.50
to $700.
He was sent to jail, had to pay some fine, he's out of jail now,
was left with a personal fortune of approx 70 Million.
His lawyer is trying to reverse a
condition whereby Shkreli cannot return to the pharma world.
He is working as a software engineer somewhere.

@windyshores
Also, I would like to use this space to say thank to @windyshores
for her kindness and empathy that she shows especially to
new participants, and to others.
In spite of her many health challenges, she exemplifies graciousness
and patience in her communication - which sometimes
is not matched in kind by posts she has lately received.

Here’s link to one study from the Australian Government 2023
https://www.tga.gov.au/news/safety-updates/new-warnings-romosozumab-evenity-cardiovascular-risks
2019 Evenity is not approved: July 1, 2019
https://pharmaphorum.com/news/chmp-says-no-to-amgens-osteoporosis-drug-evenity
“In its assessment, the advisory committee said “as it was unclear why the medicine
appeared to increase the risk of heart and circulatory problems, and there was no
obvious group of patients in whom the risk of these was lower, measures to reduce
the risk could not readily be put in place.”

and
“The CHMP was also not convinced about the efficacy of the drug in
patients with less severe osteoporosis, saying the “benefit was not so convincing”
in this group.”

A Quick Turn About - a few months later Oct 19, 2019
https://pharmatimes.com/news/chmp_u-turn_for_evenity_1313762/
this next one is FDA
https://pharmaphorum.com/news/at-long-last-amgen-ucb-score-fda-okay-for-evenity
Amgen and UCB finally have FDA approval for osteoporosis drug Evenity, two years after
it was turned down by the regulator because of safety concerns.

BTW Amgen will start losing Evenity patent in the U.S.
in 2025… earlier in Europe

Eliminating Evenity, puts me closer to deciding on another anabolic
drug.

I have ‘severe osteoporosis’ - numbers that most health professional
have told me they have never seen.
It’s taken me a over a year to not panic, and try to arrive at what I
think I should be doing.
I’m almost there.

@normahorn Dr. Ben Leder, an endocrinologist and researcher at Mass. General in Boston, discusses levels of P1NP and CTX on Evenity, in his video "Combined and Sequential Approaches to Osteoporosis" on You Tube- (minute 40). The video has a chart showing the effect on both bone markers. Leder cites "McLung et all, NEJM, 2014 for his chart.

Keith McCormick discusses it in "Great Bones" but you may be skeptical of that. I will check the studies he references and post later.

My own doctor has told me they don't really "know how Evenity works." On Leder's chart, The P1NP goes up dramatically and rapidly and comes down
fast . It isn't a really strong anti-resorptive, according to Leder. My doctor told me they had expected it to be anabolic the whole year , due to the inhibition of sclerostin, and were surprised that it was not. Leder says P1NP is back to baseline at 3 months. His chart shows CTX rising during the anabolic period and then slowly but steadily decreasing starting at around 5 months.

There is a study ongoing, replacing the last 6 months of Evenity with Reclast and then another year of Reclast. I posted it once, will try to find it since it discusses the fact that Evenity is mainly anti-resorptive in the last 6 months. I also posted an article positing that treatment eventually may involve bursts of Evenity for a few months between times on Reclast or other meds.

Windyshores, if you have the time, could you dumb this down for me? I'm lost.