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.

@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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wilkenl,
Thank you for the input and suggestions.
I have been a vegetarian for 38 years and before my permanent vegetarian status in 1985, I dabbled in vegetarianism for years. This started in high school and really frustrated my parents. I am 71, so I’m talking about the 60s when being a vegetarian was radical. 🙂
Occasionally- because I feel terrible- I go vegan. After a month or two, I feel great but also bored and revert to just being a vegetarian.
Friends and family wonder how a vegetarian can be 30 pounds overweight. Well, because the vegetarian is eating ice cream, pastry, half and half, etc.
Every time I eat a vegan diet, I lose 10-15 pounds.
So.,. I am in total agreement with the Mediterranean diet.
Like you, I have cut out wine, but kept the coffee.
All this healthy eating and I am on Evenity. That feels radical, too.

REPLY

I weigh 104 and asked about a half dose, and was told no. I have the option of stopping between injections. I might call the company about this!

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@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.

Jump to this post

I hope you don't mind my joining this conversation: I just had my first Evenity injection after deciding my negative three point two on lower lumbar vertebrae/Dexan scan is more threatening than I could deal with through non pharma methods alone. Thank you for the tips re bananas and cantelope. I have a history of a 'tortuous esophagus' so these tips should help. I wanted to mention that I had sto give up regular coffee because of heart racing issues and I have found Folger's decaf is pretty good as a replacement. I wonder, since I take Miralax every day for ten years now due to constipation problems as a life long issue (I am 82), if other food might help avoid a loss of nutrients. Thank you, again, for sharing.

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@artscaping

Good evening @lashu, You will find that your research had great value. Angst....I don't know.....maybe you won't have any. You are a wonderful member to the Connect Support Group. I wish you well and also hope that you will share your experience with the group.

May you be safe, protected and free from inner and outer harm.
Chris

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If I haven't already responded to your kind remarks, I shall certainly share my Evenity experiences. The first shot, last Wednesday, seems to be 'unremarkable'. as the radiologists like to say.

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@lashu

I hope you don't mind my joining this conversation: I just had my first Evenity injection after deciding my negative three point two on lower lumbar vertebrae/Dexan scan is more threatening than I could deal with through non pharma methods alone. Thank you for the tips re bananas and cantelope. I have a history of a 'tortuous esophagus' so these tips should help. I wanted to mention that I had sto give up regular coffee because of heart racing issues and I have found Folger's decaf is pretty good as a replacement. I wonder, since I take Miralax every day for ten years now due to constipation problems as a life long issue (I am 82), if other food might help avoid a loss of nutrients. Thank you, again, for sharing.

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@lashu low sodium V-8 has a lot of potassium. I drink it every morning for my heart. I also take magnesium at night (600mg)- for heart and inflammation. It keeps me regular! Miralax is potent (I am allergic to a teeny amount and can't take it). I wonder if you could switch to magnesium!

I am getting over a tough bout with COVID and moved my Evenity to 12/21. I look forward to your reports!

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@windyshores

I weigh 104 and asked about a half dose, and was told no. I have the option of stopping between injections. I might call the company about this!

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I weight just a few pounds less. It's so frustrating when we are treated like "average" patients when we are not. I understand your concerns.

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@windyshores

@lashu low sodium V-8 has a lot of potassium. I drink it every morning for my heart. I also take magnesium at night (600mg)- for heart and inflammation. It keeps me regular! Miralax is potent (I am allergic to a teeny amount and can't take it). I wonder if you could switch to magnesium!

I am getting over a tough bout with COVID and moved my Evenity to 12/21. I look forward to your reports!

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So sorry to hear about your tough time with COVID! So you begin Evenity around the same time as me. We can track/compare. Great! Wishing us both good outcomes!

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Are you in a lot of pain and have you noticed a difference since being on Evenity?

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@windyshores

@lashu low sodium V-8 has a lot of potassium. I drink it every morning for my heart. I also take magnesium at night (600mg)- for heart and inflammation. It keeps me regular! Miralax is potent (I am allergic to a teeny amount and can't take it). I wonder if you could switch to magnesium!

I am getting over a tough bout with COVID and moved my Evenity to 12/21. I look forward to your reports!

Jump to this post

Miralax has been helping me for at least ten years now. Until I used it I had chronic problems with regularity. I do sometimes wonder though if it uses up some of the nutrients I need.
I am going to try the V-8 and maybe magnesium too. Potassium in the right amount is good for the heart. I should pay attention to that. Thank you, again. And I hope you will be successful in your pharm path. We just never know what the outcomes will be.

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I receive my 7th dose of Evenity in a couple of days. So far, no problems. I am starting to worry about what comes next. Endocrinologist says bifosphonates, but I have gerd. My friend is on Reclast and doesn’t seem to have a care in the world.

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