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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@dio1

I just received the results of my DXA scan & labwork two days ago & met with a provider in Bone Health Clinic. Result is osteoporosis. Provider is seeking pre-approval for Evenity. I read the hand-outs but this discussion group has given me more information regarding details, which I appreciate. Didn't realize there are two injections per visit; why are there two? And is drinking protein shakes a "usual" part of treatment along with supplements? Thanks

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The reason it is 2 injections is the amount of cc/ml that are in each injection. The MD/RN can only inject safely the right amount. I haven't heard of drinking a protein shake as the " usual" part of the treatment, no one ever told me that. I do take a lot of supplements as suggested by R Keith McCormick DC. I highly recommend you getting his new book " Great Bones" it is an excellent resource for you. Good luck in your journey, you found a great site with a lot of information and guidance. Knowledge is key to this awful diagnosis along with support with others going through the same thing.

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@windyshores

I have been wondering about that with Tymlos too. It makes sense that these drugs might increase bone spurs, but I don't know if they do.

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I am also wondering if Evenity or an anabolic agent like Tymlos might be actually cause a worsening of the nerve impingement that I have in my lumbar spine due to severe idiopathic scoliosis. So far I have not been able to find any information about that possibility. Does anyone know of a spine expert who has a subspecialty of treating osteoporosis in patients with scoliosis?

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I was on Evinity with no side affects. Didn't do any good. Tried tymlos with nasty side affects eg. Nausea, diarrhea, hair loss so I quit I'm on vitamin D and calcium plus vita lift which I get from Walmart and no further bone loss to date

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@pedsnurse61

The reason it is 2 injections is the amount of cc/ml that are in each injection. The MD/RN can only inject safely the right amount. I haven't heard of drinking a protein shake as the " usual" part of the treatment, no one ever told me that. I do take a lot of supplements as suggested by R Keith McCormick DC. I highly recommend you getting his new book " Great Bones" it is an excellent resource for you. Good luck in your journey, you found a great site with a lot of information and guidance. Knowledge is key to this awful diagnosis along with support with others going through the same thing.

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Got it. Thank you!

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With Tymlos, one can ramp up the dosage to acclimate to it. Some doctors will start with a 20% dosage of Reclast. With Evenity coming in 2 syringes, it should be easy to try a half dose for each of the first two months. Yet, I was vehemently denied that option when I asked. If they care about us, they should listen to our concerns about possible adverse reactions. It seems to me that a half dose is better than no dose and would be reassuring.

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@pame

I was on Evinity with no side affects. Didn't do any good. Tried tymlos with nasty side affects eg. Nausea, diarrhea, hair loss so I quit I'm on vitamin D and calcium plus vita lift which I get from Walmart and no further bone loss to date

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@pame maybe you could try again. I did. I landed in the ICU after my first full dose of Tymlos. I was determined and started again with two out of eight clicks of the pen, which is a 1/4 dose. I moved up slowly and am just completing 18 months of 6-7 clicks with excellent gains of 20% in spine and 9% in hip.

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@arely

Hi Everyone

I had my 5th evenity injection today. Anyone have suggestions what I can take when I have muscle cramps night. I am also having pain in my hip and headaches.

Thank you Arely

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Hi Arely,
I came on this site to see if anyone else is having headache issues and there you were with headaches and other issues that I have experienced, including nocturnal muscle cramps (a really bad one this a.m.) and painful hip pain that I woke up with along with knee pain in the other leg some time ago. I have had my five shots and will have 6th next week. All issues resolved pretty quickly, thankfully.
As for the muscle cramps be sure to drink water, maybe some magnesium and stretch the legs before bed. Cleveland Clinic has some good info on cramps.

I typically don't have headaches but recently, and especially during the last week, I got something I thought was strange: my scalp hurt when I brushed my hair and had pain on one side of my head. It wasn't like a typical headache where you sense it inside your head, but on the outside of your head. Very strange. Yesterday I went to my book "Heal Your Headache" by David Buchholz, M.D. of Johns Hopkins University School of Medicine, 2002, which I purchased some time ago when I started to have Optical Migraines. Sure enough my symptoms are discussed prominently and the diagnosis is Migraine. As soon as I read that I felt better and today I am much better without the stress of wondering what in the world the strange head pain was about.
Sorry to all of you who may read this rambling message but I hope it helps you, Arely, and others. I am still an Evenity fan, by the way.

Be well everyone,
Kolika
.

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@dianestanley

Windyshores: Do you like the Reclast better than the Prolia after Evenity. I will be having my 12th Evenity shot next month. My doctor thought about Prolia but I just don't know as I will probably have to have dental work done at sometime in the future. I have root canals. Thanks, Diane Stanley

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If you do Prolia you will need to do Reclast anyway, eventually. According to Dr. McCormick, the chiropractor who wrote two books on osteoporosis (someone posted a link to his video on meds on this forum) and my own doc, you can't stop Prolia without going on something else (bisphosphonate). Also, you can do Reclast once or twice and go off meds with monitoring, at which point you can try holistic methods until meds are needed, if they are.

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I had my second round of Evenity injections. Despite years of on and off fosamax both my hips and spine numbers continued to worsen. Other than a slight rash which cleared up in two days, I have had no side effects. I am very diligent about drinking lots of water and get plenty of exercise (walking, water exercise and some specific exercises for my back and shoulder). The duration of each injection is about 20 seconds and stings a bit, but I am already used to it and the nurse is very good at administering.

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I had my second round of Evenity injections two days ago.
No side effects other than a little swelling at injection site.

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