Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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2121 | @leslie2121 | Oct 13, 2022

Thought I'd provide an update after having 8 monthly Evenity injections. I seem to be getting more side effects as I get towards the last few injections. The muscle aches I can tolerate, and seem to ease when I exercise.
I have noticed more mental changes, which are more bothersome. I have a weird sensation which is hard to describe - but definitely in my head, and I feel fatigued and spacy. Some days are worse, and I also have trouble sleeping which exacerbates those feelings. It comes and goes, not always as bad as other days.
Trying to decide whether to stick it out - decrease to one vs. two injections - not getting a lot of response from my endocrinologist.
I have 4 more left, and then a dexa scan to see how things look.
Then a decision about maintenance, which I'm now a bit more worried about. My doctor is recommending Prolia, and then Reclast if I don't tolerate the Prolia.
Anyone else had this experience with the mental changes?

willow10 | @willow10 | Oct 15, 2022

In reply to @bevjohn "I am considering Evenity. Have doc appts coming up to discuss. The black box warning makes..." + (show)

I was also very concerned because heart issues do run in my family, but in my case, I had completed a stress test a few months before and showed no problems, so that did ease my concern a bit.
Since starting Evenity 8 months ago, I've made it a priority to walk every day and that has helped my blood pressure and I feel better and stronger than I have in many years and managed to even drop a couple of pounds!
It's a choice we have to make as individuals. I realized that I wasn't ready to give up horseback riding and live a quiet life just in case I might fall and get hurt, but again, everyone must decide their own level of comfort with our reality going forward.
Good luck with whatever you choose to do. We're all rooting for you!

me49 | @me49 | Oct 15, 2022

In reply to @leslie2121 "Thought I'd provide an update after having 8 monthly Evenity injections. I seem to be getting..." + (show)

Yes, I have. I noticed that after the first 2 injections. The fatigue is really significant for the first 7 days. I don't start feeling like myself until 3 weeks. I have decided to stop Evenity treatment after the 6th injection. My blood pressure is creeping up, about 10 points systolic. I'm seeing other changes too, like jaw and muscle cramping. Itching has always been present. I'm seeing the doctor in 2 weeks. I won't take Prolia or Reclast. These drugs take too long to process out of the system if there's a problem. My preference is something I can control better if there's a problem like an oral bisphosphonate or BHRT.

jeanniebeannie54 | @jeanniebeannie54 | Oct 25, 2022

I started Evenity in August of 2022. Up til now, no side effects.
I fell and fractured my left hip and femur May 15 2022.
As of right now, after almost six Mos. After hip surgery, and healing,somewhat, I am in so much pain in my left buttock, hip and thigh my husband is having to help me with walking and Everything again!!,
I am going to stop taking Evenity, not sure if this pain is a side effect, but the pain is indescribable. Will let you know in how long, I don't know but it can't be soon enough. Jeanne

anjalima | @anjalima | Oct 26, 2022

In reply to @contentandwell "@lioness As I commented, I too am taking a calcium supplement but I do watch how..." + (show)

Almond milk, like other nut milks and orange juice are “ fortified” with calcium . That means they are supplemental calcium. It’s so frustrating and difficult to get enough calcium from food but I’m trying to work on strategies that may get me to 1200. It will definitely include organic dairy.

lpenny | @lpenny | Oct 26, 2022

In reply to @jeanniebeannie54 "I started Evenity in August of 2022. Up til now, no side effects. I fell and..." + (show)

Jeanne, Seven years ago I also had a serious fall. Broke my hip, femur and pelvis. Since the surgery I have experienced the same pain you are describing. Unfortunately, I went to the wrong hospital and did not have an orthopedic team perform my surgery and the Dr. not qualified. I was able to get my hospital records and find out what actually happened. I would go back to the orthopedic Dr. that did your surgery and see if you can get any answers. I honestly don’t know if Evenity is causing you pain. Hope you find your answers but it will take a lot of research. How did you feel after the surgery before you went on Evenity? So sorry you had this accident.

JK | @contentandwell | Oct 27, 2022

In reply to @anjalima "Almond milk, like other nut milks and orange juice are “ fortified” with calcium . That..." + (show)

@anjalima since writing that post I have switched to non-fat, high protein dairy milk. I went through a period of lactose intolerance but that has gotten better, plus the dairy milk I use is lactose free!
JK

2121 | @leslie2121 | Oct 28, 2022

In reply to @jeanniebeannie54 "I started Evenity in August of 2022. Up til now, no side effects. I fell and..." + (show)

After 8 injections I decided ( at recommendation of my endocrinologist) to take a month or 2 off to see if the symptoms I was having resolve.
I developed a chronic cold with cough (had to use my inhaler) and itchy scalp w rash like bumps around my ears… very minor but noticeable to me.
So far, those are resolving interestingly. And thankfully!
So will probably stop Evenity and switch to something to keep the gains.
Thinking Reclast -
What has been everyone’s experiences ?

phronib | @phronib | Oct 30, 2022

In reply to @marcd "My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study..." + (show)

@marcd

My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study shows benefit for up to two years.
Following is an update on my use of Evenity for more than one year.
I have now been receiving monthly Evenity for about a year and a half. The side effects (local soreness and a bit fatigue) seem to be a very slight bit more than they were a year ago… but not sure if that is the medication or other factors going on in my life.
In a month or so I plan to arrange for an updated DEXA scan, as well as CTX and P1NP blood tests. (The blood tests give an indication of how the bones will continue to build with continued use of Evenity.)
I will review the results with my doctor. At that point I will decide whether to continue Evenity for another six months. Alternatively, I will pause Evenity and switch over to a bisphosphonate for a period of time – then return to the Evenity treatment.
I am considering Risedronate (Actonel) as the bisphosphonate medication because it works with my longer-term treatment plan.
Here is the explanation: Risedronate (Actonel) does not last very long. My osteoporosis doc says “It detaches quickly from the bone.” That is good from my point of view since I hope to return to Evenity treatment after a period of time. Biphosphonate treatment tends to interfere with the action of Evenity. My hope is that the risedronate/Actonel will help maintain the bone density for a period of time while my CTX and P1NP blood tests show a return to baseline. I will then return to Evenity. Since the Actonel “detaches quickly from the bone” my hope is that the Evenity will be able to work effectively with a fairly short term use of residronate/Actonel
I will appreciate any information from someone who has experience with a course of treatment similar to this or other information that might be useful as I consider this course of treatment.
Thanks!

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Thank you @marcd so much for sharing this research. As a Evenity-newbie, I found it helpful and informative.