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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@ann707

Try switching to once a week actonel. The dosage is lower and it has a shorter half life than Fosamax so it can clear your system faster.
I stopped Evenity after 9 months because of increasing pain in my hands and wrists. The follow up with Reclast, which I had taken before without any lasting problems, the pain in my right hand/thumb joint intensified and within 6 weeks or so traveled to my left hand. Over a year the pain has decreased and I am able to pinch things and open cans again. I still have discomfort if I overdo but it is no where near what it was.
Because of my reaction to Reclast I did do the change to Actonel and I haven't had any increased pain in my hands that I can say is because of the drug since then. At least for now.
If I recall there was someone else on this forum who went to Fosamax after Evenity had problems and switched to Actonel. If she reads this maybe she will chime in as to her experience.
Good luck

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Sorry there was some stuff I wanted to add. As you probably noted on reading peoples reactions to OP drugs the response seems to depend on the individual. Some people have problems and some don't. Sometimes the problems are short lived, sometimes not. It is so incredibly frustrating not to have someone i.e. your doc be able to say 'do this and all will be well'. It's so annoying and stressful. The best you can do is talk to your doc about options and do your own research about what they suggest.
On a side note my endocrinologist did suggest if Actonel didn't work out I could take a half dose of Reclast delivered over 60 minutes; not sure how that dosage/time helps but it was presented as an option. I believe there are some folks who have done that.
Again good luck!

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@ann707

Sorry there was some stuff I wanted to add. As you probably noted on reading peoples reactions to OP drugs the response seems to depend on the individual. Some people have problems and some don't. Sometimes the problems are short lived, sometimes not. It is so incredibly frustrating not to have someone i.e. your doc be able to say 'do this and all will be well'. It's so annoying and stressful. The best you can do is talk to your doc about options and do your own research about what they suggest.
On a side note my endocrinologist did suggest if Actonel didn't work out I could take a half dose of Reclast delivered over 60 minutes; not sure how that dosage/time helps but it was presented as an option. I believe there are some folks who have done that.
Again good luck!

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@ann707 I cannot do oral bisphosphonates due to GERD, and my doc was concerned about kidney disease, afib and general sensitivities with Reclast. He prescribed a 20% test dose. I hydrated the day before and day of, and he ordered an hour of IV hydration and the infusion of the low dose Reclast was also an hour. I took tylenol before, after, bedtime and as needed (frequently) for fever for 5 days. My tinnitus got worse and after a week or two I had pins and needles in my hands and feet. Now, at one month, I am fine- no side effects.

I will do 1 - 1.5 mg in September ( 3 month mark) then go up to 2 - 3 mg in Dec. I wish I could take Actonel but hoping I can continue this way and maybe mimic the shorter action of orals. We'll see! (This is follow up to Tymlos for 2 years and Evenity for 4 months.)

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@ann707

Try switching to once a week actonel. The dosage is lower and it has a shorter half life than Fosamax so it can clear your system faster.
I stopped Evenity after 9 months because of increasing pain in my hands and wrists. The follow up with Reclast, which I had taken before without any lasting problems, the pain in my right hand/thumb joint intensified and within 6 weeks or so traveled to my left hand. Over a year the pain has decreased and I am able to pinch things and open cans again. I still have discomfort if I overdo but it is no where near what it was.
Because of my reaction to Reclast I did do the change to Actonel and I haven't had any increased pain in my hands that I can say is because of the drug since then. At least for now.
If I recall there was someone else on this forum who went to Fosamax after Evenity had problems and switched to Actonel. If she reads this maybe she will chime in as to her experience.
Good luck

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I decided to give the Fosamax one more week and hope that the adverse effects calm down. I also scheduled an appointment at the Cleveland Clinic for a second opinion because there are some things I don't agree with my doctor about, testing, meds, etc. I have to wait till September but in the long run that's not too bad. That's another reason I decided to hang in there with the Fosamax for now, it would be a long time without medication.
Thanks for your info about Actonel.

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On June 7, I posted this:
I just had my 12th Evenity injections yesterday. With the 1st injections in my arms, I wondered how I would deal with it for the series of 12 because my arms were so very sore for a week. With the 2nd injections, I switched to having the injections in my abdomen--miracle!!! Absolutely no discomfort, able to continue all my activities, wear jeans and waisted clothes. So months 2-12 I had the injections in my abdomen.
Will have Dexa scan on June 17, then follow up with my osteoporosis dr. on July 11. I'll see what her suggestion is for follow up med. I appreciate all the discussions about Prolia and Reclast. I have 2 friends on Prolia who are having no problems at all.

At my July 11 follow up with my osteoporosis Dr, she was very pleased with the gains I had on Evenity--8% spine, 7.5% left femoral neck, 6% right femoral neck. All my numbers are in the Osteopenia range! After discussion about Reclast vs Prolia with my Dr. (who has many years of experience treating osteoporosis patients), here's what I'm doing:
I had my 1st Prolia injection yesterday and feel great--no side effects or injection site tenderness at this time. I had the injection in my abdomen (see the above comment about my experience with Evenity). My next DEXA will be in June 2026, 2 years after my post Evenity DEXA.

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@vrgarden

On June 7, I posted this:
I just had my 12th Evenity injections yesterday. With the 1st injections in my arms, I wondered how I would deal with it for the series of 12 because my arms were so very sore for a week. With the 2nd injections, I switched to having the injections in my abdomen--miracle!!! Absolutely no discomfort, able to continue all my activities, wear jeans and waisted clothes. So months 2-12 I had the injections in my abdomen.
Will have Dexa scan on June 17, then follow up with my osteoporosis dr. on July 11. I'll see what her suggestion is for follow up med. I appreciate all the discussions about Prolia and Reclast. I have 2 friends on Prolia who are having no problems at all.

At my July 11 follow up with my osteoporosis Dr, she was very pleased with the gains I had on Evenity--8% spine, 7.5% left femoral neck, 6% right femoral neck. All my numbers are in the Osteopenia range! After discussion about Reclast vs Prolia with my Dr. (who has many years of experience treating osteoporosis patients), here's what I'm doing:
I had my 1st Prolia injection yesterday and feel great--no side effects or injection site tenderness at this time. I had the injection in my abdomen (see the above comment about my experience with Evenity). My next DEXA will be in June 2026, 2 years after my post Evenity DEXA.

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@vrgarden how long will you do Prolia before doing Reclast?

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@windyshores

@vrgarden how long will you do Prolia before doing Reclast?

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I'm guessing we'll revisit that after my DEXA after 2 years of Prolia.

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@windyshores

@vrgarden how long will you do Prolia before doing Reclast?

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At this time, all I know is I ‘ll be on Prolia every 6 months and have another DEXA in 2 years. After that, remain on Prolia? Not sure if Reclast is in my future. With all the research being done, who knows? Maybe a new med or more data will be released—so in the meantime, I‘ll do what I can to stay active, safe, and healthy.

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@vrgarden

At this time, all I know is I ‘ll be on Prolia every 6 months and have another DEXA in 2 years. After that, remain on Prolia? Not sure if Reclast is in my future. With all the research being done, who knows? Maybe a new med or more data will be released—so in the meantime, I‘ll do what I can to stay active, safe, and healthy.

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If you stop Prolia you will need Reclast. But if you stay on Prolia, that's a different story. Depending on age, at some point you may have to get off Prolia. Since both Prolia and Reclast are antiresorptives with long term risks, maybe you can ask your doctor if those risks are cumulative with the two meds or separate with each. I would love to know what your doc says.

By that time maybe Evenity will be okay after Prolia but would still require Reclast at one year, and that is basically three anti-resorptives total (Evenity is both anti-resorptive and anabolic).

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@windyshores

If you stop Prolia you will need Reclast. But if you stay on Prolia, that's a different story. Depending on age, at some point you may have to get off Prolia. Since both Prolia and Reclast are antiresorptives with long term risks, maybe you can ask your doctor if those risks are cumulative with the two meds or separate with each. I would love to know what your doc says.

By that time maybe Evenity will be okay after Prolia but would still require Reclast at one year, and that is basically three anti-resorptives total (Evenity is both anti-resorptive and anabolic).

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Good thoughts and questions. I'll keep all this in mind and will continue to ask questions and gain info.

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I finished the year of Evenity on June 18, minimal side effects. Just sore arms for a day and a half. Definite improvement all over, spine went from -4.6 to -3.0. My rheumatologist wanted me to do Prolia, but I moved shortly before finishing the Evenity ( made a 2 hour drive each way to get the last 3) and I so far can’t get into a specialist in my new area for months. I am going to have my PCP put me back on alendronate in the meantime so I at least am on something to try and maintain. I never had issues with it. When I can get into a specialist I will explore other options. It’s beyond ridiculous how long you have to wait to get specialty care, or even primary care in some instances.

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