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.

@susanfalcon52

Teb,
I am interested in your GERD diet and herbs. I’m on Protonix for GERD and as I’m sure everyone knows, Protonix is bad for bones.

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@susanfalcon52 just fyi it is tough to just stop Protonix and similar meds. The body adjusts to them by making more acid, so when you stop, you are worse than when you started. I read this, and it was my experience. I don't know if it is a universal experience.

What I read, and what I did, was to switch to a shorter term histamine H-receptor antagonist like Pepcid or Zantac. Take daily (or even twice daily) and then gradually taper off. I had to taper very gradually.

I now use Tums and very rarely a Pepcid as needed.

I don't eat after 5 or 6pm and if I have to swallow anything -water, pills- before bed I stay upright for awhile. Of course avoid anything spicy.

For an esophagus issue I also occasionally (a few times/year) swallow a steroid by squirting an inhaler in my mouth and swishing it with a very small amount of water.

I have an autoimmune disorder that causes GERD and many other issues but this strategy should work for others too.

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@susanfalcon52

Teb,
I am interested in your GERD diet and herbs. I’m on Protonix for GERD and as I’m sure everyone knows, Protonix is bad for bones.

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@susanfalcon52, I sent you a message

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@teb

@susanfalcon52, I sent you a message

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@teb could you share info on herbs you use, here, or send me a PM?

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@windyshores

@teb could you share info on herbs you use, here, or send me a PM?

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sure thing. check your private message.

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@windyshores

@susanfalcon52 just fyi it is tough to just stop Protonix and similar meds. The body adjusts to them by making more acid, so when you stop, you are worse than when you started. I read this, and it was my experience. I don't know if it is a universal experience.

What I read, and what I did, was to switch to a shorter term histamine H-receptor antagonist like Pepcid or Zantac. Take daily (or even twice daily) and then gradually taper off. I had to taper very gradually.

I now use Tums and very rarely a Pepcid as needed.

I don't eat after 5 or 6pm and if I have to swallow anything -water, pills- before bed I stay upright for awhile. Of course avoid anything spicy.

For an esophagus issue I also occasionally (a few times/year) swallow a steroid by squirting an inhaler in my mouth and swishing it with a very small amount of water.

I have an autoimmune disorder that causes GERD and many other issues but this strategy should work for others too.

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That is very helpful, Windyshores. I am going to try that. I would very much like to get off of the protonix.

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@teb

Most of us who don't eat dairy end up needing to supplement some. But Tums is just not the best form of supplement to take. Aside from it containing calcium carbonate which is probably the least absorbable form and needs to be taken with food (as citrate can be consumed any time), it is filled with artificial colorings and flavorings. Many of those colorings are derived from petroleum and some are suspected carcinogens. Many are banned in Europe but not by our FDA. Mineral oil is also derived from petroleum. Corn starch is geneticially modified and can cause blood sugar spikes, maybe not in the small quantity that the tablet contains but if you take it regularly, who knows, it's just not a healthy thing to consume. I think when we approach osteoporosis or any other illness, or just in our quest to promote health and maintain a healthy body, it's not a bad idea to consume the cleanest, healthiest foods and products out there.

For a deeper dive, here's a great analysis of studies conducted on food colorings/dyes from the Center for Science in the Public Interest.
https://www.cspinet.org/sites/default/files/attachment/food-dyes-rainbow-of-risks.pdf

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Amazon has calcium citrate 1260 mg with 1000IU of D3 by Horbaach. This is what i am trying with K2 and magnesium 500 mg for now. We will see how that goes.

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@sheriv

My doctor is suggesting I start going on Evinity. I'm petrified and don't know if I should. I was doing perfectly fine on Prolia for about 6 years, then when I switched to Reclast last year I had a severe decrease in bone loss. Prolia always kept it stable. I don't know if I should just stay on Reclast to prevent further bone loss or what to do. Any advice would be appreciated. I see you posted this in 2020, can you tell me the outcome please.

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For what my experience is worth, I too was petrified to start Evenity. I finally went on it as I have bone density as low as -5.2. I am coming up on my 8th set of shots. I have not had any serious problems and have generally felt good. I have mostly minor headaches at times but very few so far and they go away pretty quickly. I did have one episode of scalp tenderness, but it turns out that can be a form of migraine. Once I realized that I was relieved and it went away. It's hard to tell if the headaches stem from Evenity, but I typically don't have headaches. Hope this helps, try to think positive. Good luck.

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Thank you for sharing. I am going to try one more Reclast infusion then start the Evenity. My doctor can tell how scared I am about this drug. I would love if you keep in touch and let me know the results. I hope your bone density increases :O) I truly would like to know after the 12 shots if it actually works. Please keep in touch. Thank you again for your experience. It helps me more than you know! Take care, Sheri

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@sheriv

Thank you for sharing. I am going to try one more Reclast infusion then start the Evenity. My doctor can tell how scared I am about this drug. I would love if you keep in touch and let me know the results. I hope your bone density increases :O) I truly would like to know after the 12 shots if it actually works. Please keep in touch. Thank you again for your experience. It helps me more than you know! Take care, Sheri

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@sheriv my docs say that Reclast before Evenity (or before Tymlos or Forteo) is the wrong sequence and should be the other way around. They have told me that Reclast may even, in some cases, reduce the effectiveness of the bone builders.

Is there a reason your doc is recommending Evenity rather than Tymlos or Forteo? I chose Tymlos because the dose is adjustable and I could start low. That helped with fears of side effects. I have gone from severe osteoporosis to borderline with a 20% gain even though I rarely do a full dose.

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I would assume it's because I have already had a Reclast infusion. I went from Prolia for 6 years to Reclast for the first time last year. Due to the significant amount of bone loss on my bone density scan this time, she thinks I should rebuild bone and then sustain it with reclast. I actually spoke with her today and she has decided I can do another round of reclast and then see if I can get another bone density scan (even tho it will be 1 year instead of 2), and then give me more time to think about the Evenity because she knows how afraid I am. We will then talk in February to decide if I should go on the Evenity. Sounds pretty positive that will be her plan because I need to gain the bone. After Evenity she would then put me back on Reclast again to sustain it. She told me about another injection that you would give yourself every day, but I said no to that instantly so I'm not sure if that is the Tymlos or Forteo you are talking about. I cannot give myself a shot. Is that what those meds are you are talking about?

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