Evenity Advice?

Posted by maieva @maieva, Sep 26 11:14am

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I am in the same boat as you. Very scared to start, but my spine has lot 7% last year.

REPLY
@bwaykm

How much do you take?

Jump to this post

I take 100 mcg/day.

REPLY
@bwaykm

How much do you take?

Jump to this post

I take K2 with my calcium plus D supplements. I alternate between these two: New Chapter Bone Strength (calcium carbonate) which contains 35mcg of K1 and 45mcg of K2, and then Citrical (calcium citrate) which doesn't contain K so I supplement it with Solaray 50mcg K2.

REPLY

Thanks for sharing this info.

REPLY

So I just received my first Evenity injections yesterday. I had no pain or redness, just a lump on one arm that dissipated today. I do have a slightly stuffed up nose and a dull headache. Hopefully that is all I get. The nurse who administered the shots at the Mayo Clinic was very encouraging about this drug and said that everyone seems to do well on it. I am 66 with pretty bad scores. I took Reclast for two years and had some improvement and I’m now on Evenity for a year. I am so hopeful for good results. I feel like a ticking time bomb waiting for that first fracture and I don’t do any of the activities I used to enjoy because I’m afraid of fracturing my spine. My PT I went to said that I didn’t have to worry that much about that, but I’ve read all of these posts and I feel that a lot of the exercises she was having me do (bending from the waist to touch toes, etc) were not good. There is so much conflicting information out there, it’s hard to know what to do. Trying to explain to family that no, I can’t do things or lift grandkids is very heartbreaking because they don’t get it. Anyway, I’m on this journey and will let you know how I do. Also had a ekg and am scheduled for a cadioechogram on Monday to make sure all is good in that area.

REPLY
@maieva

So I just received my first Evenity injections yesterday. I had no pain or redness, just a lump on one arm that dissipated today. I do have a slightly stuffed up nose and a dull headache. Hopefully that is all I get. The nurse who administered the shots at the Mayo Clinic was very encouraging about this drug and said that everyone seems to do well on it. I am 66 with pretty bad scores. I took Reclast for two years and had some improvement and I’m now on Evenity for a year. I am so hopeful for good results. I feel like a ticking time bomb waiting for that first fracture and I don’t do any of the activities I used to enjoy because I’m afraid of fracturing my spine. My PT I went to said that I didn’t have to worry that much about that, but I’ve read all of these posts and I feel that a lot of the exercises she was having me do (bending from the waist to touch toes, etc) were not good. There is so much conflicting information out there, it’s hard to know what to do. Trying to explain to family that no, I can’t do things or lift grandkids is very heartbreaking because they don’t get it. Anyway, I’m on this journey and will let you know how I do. Also had a ekg and am scheduled for a cadioechogram on Monday to make sure all is good in that area.

Jump to this post

@maieva I have learned to be wary of most PT's. I found a good one who does massage only and has taught me safe ways to move. I walk a lot and do tai chi.

Evenity's action peaks, as I remember, around day 11 or so. Most people do seem to do fine on it and have good results. Good luck!

REPLY

Thank you. I feel that if I hadn’t read all these posts, I would not know any information. For one thing I didn’t realize we would have to be on one drug or another forever. I thought when we reached a safe level of bone density that we could stop taking drugs, but from my understanding in these posts is that this is not true. I will never take Prolia, I do know that for sure.

REPLY
@maieva

Thank you. I feel that if I hadn’t read all these posts, I would not know any information. For one thing I didn’t realize we would have to be on one drug or another forever. I thought when we reached a safe level of bone density that we could stop taking drugs, but from my understanding in these posts is that this is not true. I will never take Prolia, I do know that for sure.

Jump to this post

@maieva the erm "drug holiday" means we stop and are monitored until it is clear we need more treatment. Since bone loss is inevitable after menopause it may be that more natural methods won't hold our gains once we reach our target. But surely there will be times when we are off meds, even if due to time limits on each med! I am going to really probe my endo on this! McCormick treated his with Forteo and Fosamax and has been doing holistic methods since, but his DEXA is, I believe -3.3 at this point.

REPLY
@maieva

So I just received my first Evenity injections yesterday. I had no pain or redness, just a lump on one arm that dissipated today. I do have a slightly stuffed up nose and a dull headache. Hopefully that is all I get. The nurse who administered the shots at the Mayo Clinic was very encouraging about this drug and said that everyone seems to do well on it. I am 66 with pretty bad scores. I took Reclast for two years and had some improvement and I’m now on Evenity for a year. I am so hopeful for good results. I feel like a ticking time bomb waiting for that first fracture and I don’t do any of the activities I used to enjoy because I’m afraid of fracturing my spine. My PT I went to said that I didn’t have to worry that much about that, but I’ve read all of these posts and I feel that a lot of the exercises she was having me do (bending from the waist to touch toes, etc) were not good. There is so much conflicting information out there, it’s hard to know what to do. Trying to explain to family that no, I can’t do things or lift grandkids is very heartbreaking because they don’t get it. Anyway, I’m on this journey and will let you know how I do. Also had a ekg and am scheduled for a cadioechogram on Monday to make sure all is good in that area.

Jump to this post

@maieva It is a very worrying situation to know you have severe bone thinning and a greater chance of fracturing than you once had. It's not an exact science but you can do a lot to make yourself safer and at the same time do fun (or needed) activities. There are programs, books, videos etc with good exercise/movement/physical therapist experts etc that can help you learn general principles of moving more safely and effectively. That said there are lots of "experts" in exercise and fitness that can give very bad advice.

From what you have said I would guess that your PT is not knowledgeable about osteoporosis. You mentioned somewhere that your PT said you won't fracture that easily. Well, if you are anywhere in the -4.0 range you have a significant chance of doing just that, fracturing easily. Not saying you cannot be active but you certainly need to first be aware that you are at risk. The truth is the best starting point.the

All that bad stuff said I am very physically active and I was in the negative fours in my spine until Evenity. I was physically active before and all during my year on it. I do bodyweight/core/theraputic exercises twice weekly. I lift weights following a modified version of the LIFTMOR protocol twice weekly. I do Beat Saber and Synthrider virtual reality games again twice weekly. And I walk a lot. I enjoy all those things.
The two games are a substitute in a sense for badminton and pickleball. The vr games are fun, as challenging as you want them to be and they do not involve sudden twisting turning types of movements that can put you at greater risk. I know some people play pickleball or badminton without extreme and sudden movements and it may be fine for them to play those sports. I like to do things all out so I quit the two sports rather than run the risk. The two vr games I mentioned I can do all out but much more safely than the two sports.
Seems like I'm just talking about myself here but what I'm trying to say is that if you learn more about exercise and movement, what puts you at greater risk and what puts you at less risk then you can be quite active and have fun.
Best of luck getting good improvement with Evenity.

REPLY

Thank you for all the encouragement! I’m learning as I go, and yes my spine is -4.0 right now, so I’m being really careful. I don’t want to start having spine fractures because once it happens, it’s seems to be impossible to correct and my spine doctor said I have a great spine for someone age 66. But it doesn’t matter if my bone density is so low. I did have my spine decay score up to 3.5 when I finished my first year of Reclast, but my second year on Reclast, it went to 4.0. I’m hoping for great results with Evenity. My vitamin D was also extremely low at 21, so another reason for the problem. I bought the good liquid vitamin D with K2 from Thorne who I trust and I just add 3 drops (3000) to my ok every morning. Hopefully that helps. I know I need to do more and now that the horrible summer is over in AZ, I will be walking a lot. We’ll see how it all works out.

REPLY
Please sign in or register to post a reply.