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.

@margot54

Did you take treatment with Evenity or one of the other Osteo medications?

Jump to this post

I started Tymlos after fracturing.

REPLY
@sewcouture

Prolia contains demosunab? (a chemotherapy drug). Just look on line under Prolia and chemotherapy. I had 2 shots of it and was in constant leg pain and lost a lot of hair. I will NEVER take another shot of it and will never take what the doctor prescribes without doing research on the drug myself. Be careful and good luck! (I have very high risk osteoporosis).

Jump to this post

I also have had severe side effects from my second injection of Prolia. I refuse to take another injection but I don't know what to take instead since you cannot just stop Prolia. Does anyone know the best alternative ? I need help. thank you

REPLY
@hlp123

I also have had severe side effects from my second injection of Prolia. I refuse to take another injection but I don't know what to take instead since you cannot just stop Prolia. Does anyone know the best alternative ? I need help. thank you

Jump to this post

Will your insurance cover Tymlos now that you have tried Prolia?

REPLY
@contentandwell

@arlene7 Most doctors do prefer for you to get your calcium through foods. There is no way I do that though, I am lactose intolerant. I realize there is calcium in some vegetables but I would not get the 1200 mg a day suggested.
JK

Jump to this post

I was diagnosed recently w/severe osteoporsis, t-score -3.5. I have gastroparesis and wasn't eating well but was told I had to increase calcium & VitD through food if possible. I do small amount of dairy, but also added Boost (380mg), Bok Choy and Kale, canned salmon and canned sardines. I get 1200mg a day w/a combination of these. There are lists of other foods including druits (figs, etc) that you can find online and try to incorporate a few of these. Dr said not to consume more than 500mg calcium at any meal, spread through day & that works better for my digestion. Just a suggestion for your journey.

REPLY
@altonagirl

I was diagnosed recently w/severe osteoporsis, t-score -3.5. I have gastroparesis and wasn't eating well but was told I had to increase calcium & VitD through food if possible. I do small amount of dairy, but also added Boost (380mg), Bok Choy and Kale, canned salmon and canned sardines. I get 1200mg a day w/a combination of these. There are lists of other foods including druits (figs, etc) that you can find online and try to incorporate a few of these. Dr said not to consume more than 500mg calcium at any meal, spread through day & that works better for my digestion. Just a suggestion for your journey.

Jump to this post

Thanks, @altonagirl Since my original post my lactose intolerance has disappeared! I do get pretty much all of my calcium through food now. I drink Fairlife Skim milk which is "ultra filtered" to concentrate the calcium and protein so it is higher in those nutrients than typical milk. I have oatmeal most mornings for breakfast and I make it with the Fairlife skim milk.
The other bonus to that is that it really does not taste like skim milk, more like 2%.

Protein is also very important for osteoporosis, bones are half protein. My endocrinologist suggested about 6 prunes a day. I do often track my nutrients with myfitnesspal to make sure I am getting what I need.
JK

REPLY
@windyshores

Will your insurance cover Tymlos now that you have tried Prolia?

Jump to this post

Dear windyshores,
Thank you for your reply. I do not know about Tymlos. Have you had a good experience with it ? I have been paying out of pocket for Prolia because my insurance will not cover it and I was told by all my doctors that it had fewer side effects than any of the other osteoporosis drugs. That is one of the reasons I am so frightened. If Prolia is the least likely to cause side effects, then I have no idea where to turn since my experience with Prolia was terrible. How are you doing?

REPLY
@hlp123

Dear windyshores,
Thank you for your reply. I do not know about Tymlos. Have you had a good experience with it ? I have been paying out of pocket for Prolia because my insurance will not cover it and I was told by all my doctors that it had fewer side effects than any of the other osteoporosis drugs. That is one of the reasons I am so frightened. If Prolia is the least likely to cause side effects, then I have no idea where to turn since my experience with Prolia was terrible. How are you doing?

Jump to this post

You have individual reactions to medications. It is probably not true, for your, for this medication, Prolia, that it has the least side effects. I like Tymlos because the injection pen has clicks so you can start at a low dose and move up. My doc actually will not prescribe Prolia for me because you cannot stop it without going on something else, or, we read, there is a quick drop in density.

REPLY
@windyshores

You have individual reactions to medications. It is probably not true, for your, for this medication, Prolia, that it has the least side effects. I like Tymlos because the injection pen has clicks so you can start at a low dose and move up. My doc actually will not prescribe Prolia for me because you cannot stop it without going on something else, or, we read, there is a quick drop in density.

Jump to this post

Dear windyshores, How long have you been on Tymlos ? I am due to get my next injection of Prolia in March. I realize that I must substitute another medication when I stop Prolia, I just do not know which one to take. I sure wish my doctors had cautioned me about Prolia instead of insisting that it was the best. How are you doing on the Tymlos ? Thank you

REPLY
@hlp123

Dear windyshores, How long have you been on Tymlos ? I am due to get my next injection of Prolia in March. I realize that I must substitute another medication when I stop Prolia, I just do not know which one to take. I sure wish my doctors had cautioned me about Prolia instead of insisting that it was the best. How are you doing on the Tymlos ? Thank you

Jump to this post

I have been on Tymlos for 5 months but I started at 1/4 then 1/2 dose for the first month or more. Yes there are side effects but they improve over time. I suggest you google all the medications and learn about them. Biphosphanates like Fosamax (oral) and Reclast (IV), like Prolia, suppress bone turnover. However drugs like Forteo and Tymlos actually grow bone (but don't suppress turnover, so bone quality is good). Evenity does both. You also need to check insurance coverage - you may be eligible for Tymlos, Forteo or Evenity now that you have "failed" Prolia. But your choices also depend on what your bone density score is. You haven't told us how severe your osteoporosis is.

REPLY
@windyshores

I have been on Tymlos for 5 months but I started at 1/4 then 1/2 dose for the first month or more. Yes there are side effects but they improve over time. I suggest you google all the medications and learn about them. Biphosphanates like Fosamax (oral) and Reclast (IV), like Prolia, suppress bone turnover. However drugs like Forteo and Tymlos actually grow bone (but don't suppress turnover, so bone quality is good). Evenity does both. You also need to check insurance coverage - you may be eligible for Tymlos, Forteo or Evenity now that you have "failed" Prolia. But your choices also depend on what your bone density score is. You haven't told us how severe your osteoporosis is.

Jump to this post

reply to windyshores, Thank you so very much for your response. My Osteoporosis : Dual Femur T -3.4, AP Spine T -2.2 Osteopenia, Left forearm radius T -5.6 Osteoporosis. Note states, At high risk for fracture without impact. I am trying to gather all of the wisdom I can before I have to make a decision on March 21st. I have appointments with my Endocrinologist, Oncologist ( I see this doctor because I have a T cell gene rearrangement for monoclonal population )my Neurologist, and my Pulmonologist before March 21st. However, every one of these doctors told me that Prolia was absolutely the best Osteoporosis drug to take, before I got my first injection. I don't expect to escape all side effects, but my experience with Prolia (second injection) were severe for eight weeks. I was told that Prolia was the best choice because it has 15% fewer side effects than any of the other choices. This really frightens me. Again, I really appreciate any information you can give me.

REPLY
Please sign in or register to post a reply.