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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@lashu

Thank you for sharing. With reference to the absorption of calcium, I have read that we can only absorb 500 mg at any given time, so I am looking for that size in the vitamins department at Kinney's or any drug store.

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Good luck to you today, you will be fine. Just make sure you hydrate before/after your injections. You might feel tired today, so just rest and relax. I hope your journey with Evenity is a good one, and that you have no side effects. As far as Calcium is concerned ( just a suggestion) I would encourage you to read to book " Great Bones" by R Keith McCormick he gives excellent advice on supplements and which Calcium ( and how much) to take. You have a lot of support on this site.

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@pedsnurse61

Good luck to you today, you will be fine. Just make sure you hydrate before/after your injections. You might feel tired today, so just rest and relax. I hope your journey with Evenity is a good one, and that you have no side effects. As far as Calcium is concerned ( just a suggestion) I would encourage you to read to book " Great Bones" by R Keith McCormick he gives excellent advice on supplements and which Calcium ( and how much) to take. You have a lot of support on this site.

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Thanks for the reminder about sufficient hydration

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@lashu

Hi lab54, I am wondering how you are doing now, a month later from your August 12 posting. I am due to start tomorrow with my first Evenity infusion. I have neuropathy in my feet that gets in the way of a good night's sleep for thirty years now. And sometimes, also, too much energy to go to sleep. My concern is the neuropathy because tingling in feet is one possible side effect that is mentioned. Did the doctors tell you why you felt nauseous? I don't remember reading that as a side effect.

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I also have Neuropathy in my feet. After my first set of injections, I did notice swelling in my ankles & feet. I do take Ropinarole for the RLS & Gabapentin for the Neuropathy. Nauseous is mentioned as a side effect but not a common one. The two major side effects are jaw cancer & headaches. I also noticed my arms have been very painful as well. The most disturbing side effect is the bad rash on my face. I’m on Doxycycline & an antibiotic gel too calm down the rash. My Rheumatologist told me it wasn’t a deal breaker that my ankles & feet were swollen or a rash on my face. She wants me too continue with Evenity because she worked so hard too get it approved. Time too find a new Rheumatologist, ya think?

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Has anyone gotten once yearly injection for osteoporosis. Seems easier than taking Fosamax but I would like to know how long injection has been on the market, and success rate of those who took it. Thank you in advance.

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@lab54

I also have Neuropathy in my feet. After my first set of injections, I did notice swelling in my ankles & feet. I do take Ropinarole for the RLS & Gabapentin for the Neuropathy. Nauseous is mentioned as a side effect but not a common one. The two major side effects are jaw cancer & headaches. I also noticed my arms have been very painful as well. The most disturbing side effect is the bad rash on my face. I’m on Doxycycline & an antibiotic gel too calm down the rash. My Rheumatologist told me it wasn’t a deal breaker that my ankles & feet were swollen or a rash on my face. She wants me too continue with Evenity because she worked so hard too get it approved. Time too find a new Rheumatologist, ya think?

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I m not knowledgble on this subject but I agree with you re new physician.

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@lab54

I also have Neuropathy in my feet. After my first set of injections, I did notice swelling in my ankles & feet. I do take Ropinarole for the RLS & Gabapentin for the Neuropathy. Nauseous is mentioned as a side effect but not a common one. The two major side effects are jaw cancer & headaches. I also noticed my arms have been very painful as well. The most disturbing side effect is the bad rash on my face. I’m on Doxycycline & an antibiotic gel too calm down the rash. My Rheumatologist told me it wasn’t a deal breaker that my ankles & feet were swollen or a rash on my face. She wants me too continue with Evenity because she worked so hard too get it approved. Time too find a new Rheumatologist, ya think?

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Thanks for your openness about these issues, I really appreciate it. My neuropathy has been around for at least thirty years and nothing has helped much. Gabapentin alone does not help a great deal but lately, with amatriptiline, it seems to alleviate it to a considerable extent! I hope it continues in this way.
The jaw is threatened with necrosis, but cancer is something I had not seen before, though it makes sense, since necrosis is dying tissue and I've found mixed reviews on the extent to which anything will help the problem. If caught early it has been said that antibiotics work, but even that was an ify promise.
Painful joints seems to happen frequently with patients. I had not heard of a rash before, but I certainly believe you. Swollen ankles and feet are also a new symptom to me, but it makes sense insofar as cardio and stroke issues are warned when taking it and those both engage circulatory health.
I postponed the injection until October, under a caution from someone in health field. So I await further advice and information.
How serious were your T scores, or however your OP was diagnosed. Am praying for your good outcomes, somehow, in spite of these problems.

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I have been afraid of the jaw necrosis too. I floss every night to try to prevent any tooth problems. From what I understand from my dentist, it's okay to get cavities filled. Just don't have a tooth pulled while on the meds. I'm not sure if root canals are risky. Good luck!

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@laverne23

I don’t know if you have had your shots yet or not. But after much research and reading comments from others, I decided to get my shots in my belly. I also took them out of the fridge about three hours before my appointment so it was totally at room temperature. I also put an ice pack on the area after each shot to lessen any swelling (the nurse provided the ice pack). Hope this bit of information on my experience helps 😀

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I've had 2 sets of Evenity injections so far. The 1st time, they gave them in the flabby part of both arms that hangs down : ) She injected slowly, but it wasn't too bad. BUT, by mid afternoon later both began to feel sore; by dinner both were very sore; and by bedtime, they were both extremely sore. I couldn't even bear them touching the sheets. I ended up sleeping in a recliner with my arms across my chest, so the backs of my arms weren't touching anything. And I have a high pain tolerance (3 babies delivered naturally, no meds). My arms were sore with tender (almost painful) lumps where injected for a week with pain radiating almost to my elbow, esp. on the left. The good news is I felt better each day and I carried out my normal active routine, being careful not to bump my arms the first few days and had no other issues.
I decided to have the 2nd set of Evenity injections in my abdomen. MUCH BETTER!!! Just tender to touch for a couple days, with a bit of a lump under the skin where injected. I was able to sleep as usual in bed.
I definitely plan on having the injections in my abdomen, if they'll give them there from now on.

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After getting injections in your stomache, put an ice pack on the injection site for a bit before you get the second shot. Then do the same at the second injection site. Definitely helps me. Also, I take it out of the fridge about three hours before my appointment to make sure it is at room temperature. If it’s still cold at the time of injection, you may experience pain. Also, slow injection is important. Just what works for me.

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I recently had my 4th injections of Evenity. I don’t seem to have much trouble with the injection site pain. The only side effect that I might be having is fatigue the day after.
I have read posts on this site where people have said that they were okay until their 5th or 6th injections and then they started having terrible reactions.
I am hoping that doesn’t happen to me. I will hang in there until injection 12 as long as I can manage symptoms. People are getting great results with Evenity.

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