1. < Osteoporosis & Bone Health

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 | @susanfalcon52 | Dec 10, 2023
In reply to @windyshores "I am going to try a 20% dose of Reclast every three months instead of a..." + (show)
@windyshores

I am going to try a 20% dose of Reclast every three months instead of a full dose for one year. I"ll let everyone know how that works out. I am trying Evenity after Tymlos first.

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Windyshores,
I am going to ask the infusion center where I receive my Evenity about the reduced dose of Reclast. If they would do that, I will choose that over a bifosphonate. Must decide in Spring as I just had 7th dose of Evenity. The Evenity has been no problem. I realize that there could be long term side effects, but cannot worry about that.
My mother had a compression fracture which ruined the rest of her life. Do not want that.

REPLY
1 reply
janflute | @janflute | Dec 10, 2023
In reply to @windyshores "I am going to try a 20% dose of Reclast every three months instead of a..." + (show)
@windyshores

I am going to try a 20% dose of Reclast every three months instead of a full dose for one year. I"ll let everyone know how that works out. I am trying Evenity after Tymlos first.

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Hope it goes well. Please let us know how you do.

REPLY
windyshores | @windyshores | Dec 10, 2023
In reply to @susanfalcon52 "Windyshores, I am going to ask the infusion center where I receive my Evenity about the..." + (show)
@susanfalcon52

Windyshores,
I am going to ask the infusion center where I receive my Evenity about the reduced dose of Reclast. If they would do that, I will choose that over a bifosphonate. Must decide in Spring as I just had 7th dose of Evenity. The Evenity has been no problem. I realize that there could be long term side effects, but cannot worry about that.
My mother had a compression fracture which ruined the rest of her life. Do not want that.

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@susanfalcon52 Reclast IS a bisphosphonate 🙂 A very potent one!

I am still recovering from COVID with a probably lupus flare. I have Evenity scheduled in 11 days. Not sure what I am going to do. I have been on Tymlos well past two years.

REPLY
1 reply
susanfalcon52 | @susanfalcon52 | Dec 11, 2023
In reply to @windyshores "@susanfalcon52 Reclast IS a bisphosphonate :) A very potent one! I am still recovering from COVID..." + (show)
@windyshores

@susanfalcon52 Reclast IS a bisphosphonate 🙂 A very potent one!

I am still recovering from COVID with a probably lupus flare. I have Evenity scheduled in 11 days. Not sure what I am going to do. I have been on Tymlos well past two years.

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I knew that, I think. I meant oral bisphosphonate. Afraid of oral meds.
Thinking about the future which will be here soon. 🙂

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1 reply
hikernurse | @hikernurse | Dec 11, 2023
In reply to @susanfalcon52 "I knew that, I think. I meant oral bisphosphonate. Afraid of oral meds. Thinking about the..." + (show)
@susanfalcon52

I knew that, I think. I meant oral bisphosphonate. Afraid of oral meds.
Thinking about the future which will be here soon. 🙂

Jump to this post

Susan I finished evenity in November of 2023 and was very concerned about what comes next. I knew Prolia was not going to happen. 2 endos I saw one an integrative endo and the other traditional and both recommend alendronate which I did start after once month. I’ve completed 6 weekly pills with just a littleGERD at night with #2 and #4. GERD has only been a very rare problem for me in the past. interesting I didn’t have the GERD the day of but the next day and it responded to. careful eating some davison and once I took one pepsis and kept head of bed up. What I’m trying to figure out is
how do I need to stay on alendronate. How do they know when the gains have been locked in. I had text book positive gains in spine gaining 13.8% (-3.1–2.5) and hip 5.4% (-3.0 to -2.7). I did this along with yoga, supplements, regular exercise including weights, good nutrition. all things i can continue but I know i still want a bit
more improvement. But I still don’t know how long I need the alendronate. I do have a CTX in january. but I doubt they will take me off at that time. I considered reclast but had concerns about its side effects also. I usually try the least invasive. Neither of my docs were in favor. I thought nice to do something once and not worry about it for a year or so! Turns out
for me so far and it’s early taking the alendronate isn’t much a big deal. I suppose if that changes I can consider reclast or one of the
docs said maybe
more evenity if I was continuing to lose. I did have 4 fractures between 55 and 67 but not fragility more
from athletic injuries but that still bought me Evenity. I was scared to death of it but it turned out ok. Wishing you the best!

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gravity3 | @gravity3 | Dec 12, 2023
In reply to @wilkenl "Susan, I hope you don't mind if I jump in on this conversation. I recently developed..." + (show)
@wilkenl

Susan,
I hope you don't mind if I jump in on this conversation. I recently developed "medication-induced GERD" from taking oral alendronate. The best approach I've found for treating it is following an anti-inflammatory diet. For three weeks, I stopped eating processed foods, red meat, drinking wine, etc. I increased anti-inflammatory foods like fatty fish and blueberries, and, in that time, I hardly felt any discomfort at all from the GERD. I continue on an "anti-inflammatory light" diet, and I've started eating oatmeal, which absorbs acid in the stomach, and fruits like bananas and cantaloupe, which are alkaline. I find it is especially useful to eat 1/2 of a banana an hour or so before going to bed. I am averse to taking any of the medications recommended for GERD, so I'm happy to have found a system of eating that makes a real difference for me. I have to admit that it was easier to give up my red wine than my coffee (!) I still have 1 - 1 1/2 cups of coffee every morning followed by fennel tea (which is good for the digestive system).

I hope this is useful for you.

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I am on evenity now but looked at my last box of alendronate 70 mg.
It doesn't say anything about day or evening for taking just take on empty stomach with 8 oz of water. Don't lie down for 30-60 min. I noticed that several of you take it at night. Would it help to take in the morning?

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ushistoryteacher | @ushistoryteacher | Dec 17, 2023
In reply to @tortuenomade913 "Hi Everyone, I have visited your posts a couple times before. I wanted to give my..." + (show)
@tortuenomade913

Hi Everyone,
I have visited your posts a couple times before. I wanted to give my 2 cents worth. So, I have had 6 shots. I have had various issues after each treatment. Headaches early on, but those are gone now. It seems that the longer I take these shots, I get more side effects. For instance, my jaw the other night hurt like the dickens. My legs have felt weak at time. My hands hurt awful sometimes. Also had blurred vision in one eye and for most of the month, I have fatigue, which means I sleep more than before Evenity. Also, losing my hair. I see an Endocrinologist and she just wants to do Reclast injection to seal my bones within 2 months of my 12th shot. I did lab work at month 4 but now she does not want to see me until I complete my treatment. Considering the risk and the fact that systolic is creeping way too high, I am going to check with my PCP about seeing a Rheumatologist about what to do next - Reclast or Alendronate. There are studies out there to follow Evenity with Alendronate which have better results than Evenity and Reclast. Well I see my PCP in a week and I will see how my blood pressure is. Worried about stroke which is a rare side effect of Evenity.

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Hi,
After taking Evenity for a month, I started losing my hair! I have really fine hair and can't afford to lose it!! My rheumatologist says "it is not a symptom," but I disagree! I have reported this side effect to the company that makes this drug.

What to do? I have taken Evenity injections since August (2023) and my December injections are scheduled for Dec. 26. I'm thinking I should cancel it. Any thoughts on this or any answers as to how long my hair will fall out or if it will come back!! Very depressing . . . .

REPLY
3 replies
hopefullibrarian | @hopefullibrarian | Dec 17, 2023
In reply to @ushistoryteacher "Hi, After taking Evenity for a month, I started losing my hair! I have really fine..." + (show)
@ushistoryteacher

Hi,
After taking Evenity for a month, I started losing my hair! I have really fine hair and can't afford to lose it!! My rheumatologist says "it is not a symptom," but I disagree! I have reported this side effect to the company that makes this drug.

What to do? I have taken Evenity injections since August (2023) and my December injections are scheduled for Dec. 26. I'm thinking I should cancel it. Any thoughts on this or any answers as to how long my hair will fall out or if it will come back!! Very depressing . . . .

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I haven't had Evenity treatment, but I had one shot of Prolia, and my hair was coming out in clumps. I was devistated. Some people have no side effects. No one can definitively say what reaction an individual might have to any given drug. We're all different. You know your body far better than your rheumatologist. After all, you spend all day every day with it. 😉
With Prolia, the more shots you get, the more problematic it is to stop, so I stopped after just one. With Evenity, I don't think it's an issue to stop at any point. Don't quote me on that, but I feel fairly confident that it's not an issue. Because of this, you might consider continuing the treatment while looking for a way to counter the hair loss issue. Only you can make that call.
I found a way to slow my hair loss. I'm losing less than I was even before the Prolia shot. It may not work for everyone, but it has done wonders for me. It takes about three months of use to really start seeing the results, so I had to be patient, but it's paying off.
I'm using Pura d'Or Original Gold Label Anti-Hair Thinning Biotin Shampoo. I bought it from their eBay store. It's also available direct from the company website as well as from other reputable sites like Swanson. After reading reviews on Amazon, I wouldn't buy it from them. Some buyers think they're receiving knock-offs. Crazy to think that someone is making shampoo knock-offs. True or not, I'm not going to risk it.

Here's the eBay link: https://www.ebay.com/itm/171480268685?epid=6026728573&hash=item27ed053f8d:g:PoEAAOSwrNdj68hR

Here's the company website link: https://purador.com/products/original-gold-label-shampoo?_pos=2&_sid=735a4fe8f&_ss=r

and Swanson: https://www.swansonvitamins.com/p/pura-dor-original-gold-label-anti-hair-thinning-shampoo-16-fl-oz-liquid?SourceCode=INTL4071&showPopup=f&medium=Shopping&utm_source=bing&utm_medium=cpc&utm_campaign=Shopping%20-%20Smart%20-%20Beauty%20&%20Personal%20Care&utm_term=4582352181253791&utm_content=Beauty%20

FYI, you get free shipping when you buy it from their eBay store.

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windyshores | @windyshores | Dec 17, 2023

I am scheduled for Evenity this Thursday 12/21, I am still recovering from COVID (negative tests for 10 days, just a cough). I have to drive 5 hours to pick up my daughter the next day. A friend suggested I reschedule because she was really really tired the day after Evenity. I am already kind of fatigued from a month of being ill.

Have others experienced fatigue the day after Evenity?

REPLY
5 replies
hikernurse | @hikernurse | Dec 18, 2023
In reply to @windyshores "I am scheduled for Evenity this Thursday 12/21, I am still recovering from COVID (negative tests..." + (show)
@windyshores

I am scheduled for Evenity this Thursday 12/21, I am still recovering from COVID (negative tests for 10 days, just a cough). I have to drive 5 hours to pick up my daughter the next day. A friend suggested I reschedule because she was really really tired the day after Evenity. I am already kind of fatigued from a month of being ill.

Have others experienced fatigue the day after Evenity?

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some fatigue for me but not overwhelming but as we know we all react differently. I had Covid before my first dose also and delayed a week or so. I did okay.

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