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.

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

@windyshores

Unlike Forteo, the Tymlos pen has "clicks" so you can control the dose. Start with two and move gradually up to minimize side effects. Tymlos and Forteo both stimulate parathyroid hormone. In my experience and others', the body adjusts to treatments related to hormones over time, so start low and move up to 7-8 clicks over a couple of months.

I would also comment that the same company that makes Evenity, makes Prolia, so of course they recommend that sequence. My doc will not prescribe Prolia, but low dose Reclast, after I do Tymlos. If my bones aren't good enough after Tymlos I am going to request Evenity then.

Jump to this post

Thank You @windyshores. I am leaning towards Tymlos. Does anyone know if there is co-pay assistance program with Tymlos?

REPLY
@dee5

Thank You @windyshores. I am leaning towards Tymlos. Does anyone know if there is co-pay assistance program with Tymlos?

Jump to this post

Yes call Together with Tymlos. The application for Radius Assist is on the Radius site but Together with Tymlos will coordinate for you. If you are not on Medicare there may be other ways to discount, like coupons.

REPLY
@windyshores

Unlike Forteo, the Tymlos pen has "clicks" so you can control the dose. Start with two and move gradually up to minimize side effects. Tymlos and Forteo both stimulate parathyroid hormone. In my experience and others', the body adjusts to treatments related to hormones over time, so start low and move up to 7-8 clicks over a couple of months.

I would also comment that the same company that makes Evenity, makes Prolia, so of course they recommend that sequence. My doc will not prescribe Prolia, but low dose Reclast, after I do Tymlos. If my bones aren't good enough after Tymlos I am going to request Evenity then.

Jump to this post

Does anyone have experience with Reclast?

REPLY
@windyshores

Yes call Together with Tymlos. The application for Radius Assist is on the Radius site but Together with Tymlos will coordinate for you. If you are not on Medicare there may be other ways to discount, like coupons.

Jump to this post

Thank You!

REPLY

Is anyone out there following any bone strengthening exercises? There are so many conflicting exercise videos out there. Would appreciate a link please. I do 30-45 mins walk at least 5 times a week. Just started doing weight bearing exercises but not sure if these are the right ones for osteoporosis.

REPLY
@windyshores

Unlike Forteo, the Tymlos pen has "clicks" so you can control the dose. Start with two and move gradually up to minimize side effects. Tymlos and Forteo both stimulate parathyroid hormone. In my experience and others', the body adjusts to treatments related to hormones over time, so start low and move up to 7-8 clicks over a couple of months.

I would also comment that the same company that makes Evenity, makes Prolia, so of course they recommend that sequence. My doc will not prescribe Prolia, but low dose Reclast, after I do Tymlos. If my bones aren't good enough after Tymlos I am going to request Evenity then.

Jump to this post

Can you comment on why your doc does not recommend prolia? Thanks

REPLY
@sus34

Can you comment on why your doc does not recommend prolia? Thanks

Jump to this post

I didn't ask because I don't want it. He just said "I would not use Prolia for you." Prolia affects a part of the immune system (Rankl inhibitor) and I have had cancer and have lupus. Also you cannot just stop it w/out something else. He may also have felt I was not a good candidate due to med sensitivities. Sorry I am not really sure. I now need bone growing meds but he will follow Tymlos with low dose Reclast, not Prolia.

If you do Prolia, you need to know what you will do afterwards because apparently there is a high risk of vertebral fractures when you go off.

REPLY
@windyshores

I didn't ask because I don't want it. He just said "I would not use Prolia for you." Prolia affects a part of the immune system (Rankl inhibitor) and I have had cancer and have lupus. Also you cannot just stop it w/out something else. He may also have felt I was not a good candidate due to med sensitivities. Sorry I am not really sure. I now need bone growing meds but he will follow Tymlos with low dose Reclast, not Prolia.

If you do Prolia, you need to know what you will do afterwards because apparently there is a high risk of vertebral fractures when you go off.

Jump to this post

May I ask what type of cancer? Or if the cancer left you immune compromised or taking immune compromising drugs? The doc here is recommended evenity followed by prolia…also very hesitant about prolia requiring it to be lifelong. I have taken 2 rounds of reclast previously, used quite often for cancer patients (you are likely aware), with no real issues. But now it is felt that I need a bone growth option and cannot take Tymlos.

REPLY
@marcd

Evenity can be continued for two years and will continue to benefit bone density according to this report.
https://pubmed.ncbi.nlm.nih.gov/29694685/
The report is based on a study of patients who received Evenity for two years, followed by Prolia after completion of 2 years of Evenity. The report says that bone density continued to increase throughout the the 2 years of Evenity and continued to increase during the following year of treatment with Prolia.
I would be interested in thoughts of others in regard to this possible treatment
I have been taking Evenity for 7 months with no side effects.

Jump to this post

Thanks for the post. Interesting that the trial results were published in 2018 and today's general recommendation is for a year of treatment as it seems to lose efficacy after that amount of time. Likely the insurance companies will not cover beyond a year. I plan to begin Evenity soon but am concerned about follow-up treatment such as Prolia.

REPLY
@sus34

May I ask what type of cancer? Or if the cancer left you immune compromised or taking immune compromising drugs? The doc here is recommended evenity followed by prolia…also very hesitant about prolia requiring it to be lifelong. I have taken 2 rounds of reclast previously, used quite often for cancer patients (you are likely aware), with no real issues. But now it is felt that I need a bone growth option and cannot take Tymlos.

Jump to this post

Breast cancer. Why can't you take Tymlos?

Evenity seems to be a great medication. I would worry about follow-up later. There will be more info as time goes on. The same company that makes Evenity makes Prolia so maybe that is why docs are pushing it-? I have no idea what someone who has already done Reclast does after Evenity. As you know Prolia (Xgeva) is also used for cancer patients.

REPLY
Please sign in or register to post a reply.