My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

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

I will be having a DEXA scan next week to see if there were any improvements after 5 doses of Evenity. I will post my results. Depending on the results I will decide what my next step will be. Unfortunately I do not have a MD I have trust in so the decision is mine alone. As always I am trying to think positive thoughts and continue to take my supplements and stay active.

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@bern06

Think I will ask my doctor if I can skip these last two injections. He has already told me I will follow up with Prolia to help keep any bone improvement made with Evenity. My doctor said he's seen very good results in patients with this drug so I'm very hopeful. I've been very lucky in my 71 years to have had to take very few prescription drugs. As someone mentioned even OTC drugs have side effects. We all have to make the best decisions possible for our own health with the help of a trusted and well informed physician.

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@bern06 I am puzzled by the differences in doctor recommendations since I would have assumed they are based on studies. My docs will not use Prolia (top docs at major hospital). How are you going to get off Prolia eventually? I am going to do Reclast to "lock in" gains from Tymlos and then hope to take a break. Evenity is so new that little seems to be known about follow-up. The manufacturer of Evenity also makes Prolia and recommends that sequence on the website. I am curious what your doc said about future treatments.

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@bern06

Think I will ask my doctor if I can skip these last two injections. He has already told me I will follow up with Prolia to help keep any bone improvement made with Evenity. My doctor said he's seen very good results in patients with this drug so I'm very hopeful. I've been very lucky in my 71 years to have had to take very few prescription drugs. As someone mentioned even OTC drugs have side effects. We all have to make the best decisions possible for our own health with the help of a trusted and well informed physician.

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For Evenity users, how often are they re-checking your T scores?

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Less than a week after my first Evenity injection I am experiencing cold symptoms...runny nose, sneezing, sore throat for one day, feeling congested and with low energy. I am resting and taking anti histamine medication. I don't usually get colds nor allergy symptoms at this time of year. Anyone experienced these symptoms? I looked up Evenity and they did mention runny nose, sore threat could be a side effect.

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@windyshores

@bern06 I am puzzled by the differences in doctor recommendations since I would have assumed they are based on studies. My docs will not use Prolia (top docs at major hospital). How are you going to get off Prolia eventually? I am going to do Reclast to "lock in" gains from Tymlos and then hope to take a break. Evenity is so new that little seems to be known about follow-up. The manufacturer of Evenity also makes Prolia and recommends that sequence on the website. I am curious what your doc said about future treatments.

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I too am amazed and horrified that doctors recommend Prolia seemingly without a thought of how do you get off of it. Not everyone gets multiple spinal fractures when stopping Prolia but the risk of those fractures is significant. And while it is perhaps not clearly defined how many people will get those multiple fractures it is clear that there is a significant risk for a very bad outcome. Your life could just get chaotic for whatever reason and you miss your shot and then a few months later you start fracturing!
People confuse this issue by thinking that Prolia is just like the anabolics in that you lose bone quickly after stopping it. But it's not the same. With the anabolics you do lose bone but you don't start getting multiple spinal fractures. In fact there's a study showing that your fracture risk stays improved for up to 1.5 years after stopping Forteo even though you are losing the bone density you gained while on it.

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@shula

Less than a week after my first Evenity injection I am experiencing cold symptoms...runny nose, sneezing, sore throat for one day, feeling congested and with low energy. I am resting and taking anti histamine medication. I don't usually get colds nor allergy symptoms at this time of year. Anyone experienced these symptoms? I looked up Evenity and they did mention runny nose, sore threat could be a side effect.

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I'm about ten days after my first dose of Evenity, and I also have a big head cold... sneezing, runny nose. Taking cold meds and carrying on, but unusual, too, for me at this time of year. Evenity brochure does mention colds, though I haven't seen many people talk about getting them.

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@ottawabones

I'm about ten days after my first dose of Evenity, and I also have a big head cold... sneezing, runny nose. Taking cold meds and carrying on, but unusual, too, for me at this time of year. Evenity brochure does mention colds, though I haven't seen many people talk about getting them.

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I appreciate your reply@ottawabones.
Will work on keeping up my spirits and I hope you will too!

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@shula

I appreciate your reply@ottawabones.
Will work on keeping up my spirits and I hope you will too!

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I hope you don't have any other symptoms. After my first dose I also had cold symptoms, headache, fatigue, and some eyelid swelling. My MD told me to take a Benadryl. My side effects were manageable until after my 4th injections when I started having Palpitations. I truly was going to stick with this medication but after the 5th dose they got worse. I am going to be seeing a Cardiologist if they don't resolve, I am worried, I have never had any heart issues, I am a healthy 62 year old, very active. Yes, try and think positive thoughts, if you can meditate, keep active and read " Great Bones" the book by R Keith McCormick. It has so much information about OP and he explains things in terms you can understand. This site is so helpful with all the support we receive from each other.

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@bern06

Think I will ask my doctor if I can skip these last two injections. He has already told me I will follow up with Prolia to help keep any bone improvement made with Evenity. My doctor said he's seen very good results in patients with this drug so I'm very hopeful. I've been very lucky in my 71 years to have had to take very few prescription drugs. As someone mentioned even OTC drugs have side effects. We all have to make the best decisions possible for our own health with the help of a trusted and well informed physician.

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If you do not take Prolia does that mean you lose the gains won with Evenity?
Thank you for sharing; I am concerned with side effects of this med.

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@lashu

If you do not take Prolia does that mean you lose the gains won with Evenity?
Thank you for sharing; I am concerned with side effects of this med.

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@lashu you can transition to Reclast after Evenity, and with monitoring we may be able to take a break after one or two infusions. In our 80's Prolia might be okay, depending on our life span- according to my doc.

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