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.

Profile picture for yvettemas1948 @yvettemas1948

Hello everyone,

I have suffered severe osteoporosis since early 2006 when an osteopath broke a bone on my upper chest so I was then 57 years old,

I've never taken strong medication in my life instead I use homeopathy /herbs suplements or rarely so.. perhaps 4x antibiotics ... being extremely sensitive to everything.. so I started using Wellspring Progesterone / estrogen cream which doesn't cause side effects on the contrary it boots moral and perks you up.

Now I've had few bad falls which cause me to loose 4 inches and the hospital has been after me to use Evenity which scare me to say the least.

I'm mainly concerned about the side effects because I never taken strong drugs but my rheumatologist today told me my hips and spine are very thin and I could end up in a bad state if I don't take drugs.

Please...please can someone kindly help me in making such a decision.

Thank you so much for your attention. God bless everyone/

Yvette

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@yvettemas1948 - I reluctantly started the Evenity course of injections after a lot of pressure from 2 drs. Like you, I've rarely taken anything but the occasional aspirin or antibiotic when needed. I do take some vitamins/supplements as recommended by an integrative dr.

However, as soon as the year is over, I plan to start taking the over-the-counter mineral Strontium Citrate (not to be confused w/other forms of strontium used in the UK). I've read many encouraging first-hand success stories from users on Inspire.com as well as medical publications.

There's a physician-sold line of vitamins/supplements called OrthoMolecular products (top of the line, guaranteed efficacy, expensive, sometimes available at a compound pharmacy). When I discovered that they also sell a product called Strontium I read thru the Benefit Sheet provided where it cited studies done on this mineral. This info validated everything else I had already researched, but was sort of the icing on the cake for me.

I've never been on any other bone drug. I've had most of the side effects that are listed w/Evenity (headaches, hair loss, bone ache, etc)...none of which I had before. Unless these side effects become adverse reactions, I plan to finish the course. In the meantime, I'm increasing my exercises & hormones designed for bone health.

Strontium citrate is a very inexpensive mineral without the hefty price tag of OrthoMolecular products. Look for ones that have the least amount of additives.

Blessings on your journey!

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Profile picture for lauratys @lauratys

@yvettemas1948 Check out the Mayo chat "Evenity Side Effects". I did 10 months and it greatly improved my spine from -3.8 to -2.1. However, it was not without side effects that many do not suffer but I did. I had muscle, joint, bone pain that I had never had before. After stopping and switching to Actonel as you have to do something after taking Evenity, the pains/aches did subside over several months. I would consider less than a year of Evenity but check with a medical professional as I did read that the best bone building results occur in the firs 6-7 months? Is this true? idk! So many decisions but we all want to stay as mobile and strong as possible. I, too, had never taken meds much at all and grew up on an occasional aspirin and Pepto Bismol!;-) Wishing you the best but do something and stop if adverse reactions are too much. You know your body best! I don't think I regret taking Evenity but it's taken me awhile to say even that! Have a DEXA next month, two years out, so will be curious to see what is happening.

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@lauratys
I am on number 7 of Evenity. Did they mention anything else to take besides Antinol? My doctor wants me to do Prolia or Reclast. I am scared of both but don't want to lose any gains.

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My PA , who is an osteoporosis specialist, recommended Reclast first but after such a difficult time on Evenity I decided not to do something that is longer lasting and she said a bisphosphonate was fine. Now they are recommending Prolia which I will not do as once you take more than one injection you cannot quit without a very significant risk of rebound so you end up worse than you when you started. I am trying to do all else as well as Actonel for now, weight training, calcium, Vitamin D. I would be cautious about both. Best to you!

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How are you now and what did you do after Evenity?
I hope you are great!!!

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Profile picture for pyates @pyates

I've been taking Evenity for almost four months, and so far, have experienced no side effects. Hope others find that encouraging if they're considering taking the same med.

But I won't know until next summer if it's having beneficial impact on my BMD.

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@pyates What is your plan after Evenity?

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Profile picture for grammy9 @grammy9

@pyates What is your plan after Evenity?

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@grammy9

Hi Grammy. Thanks for asking.

My doctor said that, following 12 months Evenity treatment, I will be put on Tymlos and/or Forteo to, in his words, "lock in the gains."

That's as much as he said. Wish I could discuss the nuances, but at this stage of my treatment, I'm still learning the specifics myself.

Hope this helps.

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Profile picture for pyates @pyates

@grammy9

Hi Grammy. Thanks for asking.

My doctor said that, following 12 months Evenity treatment, I will be put on Tymlos and/or Forteo to, in his words, "lock in the gains."

That's as much as he said. Wish I could discuss the nuances, but at this stage of my treatment, I'm still learning the specifics myself.

Hope this helps.

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@pyates
Thank you! My doctor is set on Prolia and I don't want to do that. He said it would only be for 3 to 5 years. I hear differently from everyone else!!!

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For me, Prolia is a definite "NO" as my oncologist wants me to keep my immunity up while Prolia would lower it.

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Profile picture for pyates @pyates

@grammy9

Hi Grammy. Thanks for asking.

My doctor said that, following 12 months Evenity treatment, I will be put on Tymlos and/or Forteo to, in his words, "lock in the gains."

That's as much as he said. Wish I could discuss the nuances, but at this stage of my treatment, I'm still learning the specifics myself.

Hope this helps.

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@pyates i see my doc this thursday after my one year on evenity and will check in what he says. Seems like they all went to different schools 😂. i do know he will recommend Reclast and I ask lots of questions.

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I have had my 1st two Evenity injections. I am experiencing numbness in my face and scalp. They checked my calcium (ionized…which is the active form) and it was normal. Has anyone else experienced numbness, tingling and tinnitus (ear ringing) with Evenity?
Thank you!

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