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.

hungrybirder | @hungrybirder | Nov 14 11:51am
In reply to @firecracker "Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years..." + (show)
@firecracker

Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years were 70 mg (full strength).
I took an 18 month holiday before 5 more years of Fosamax. (A lot of Fosamax, I know.)
After another 1 year holiday, I had Reclast for 3 years.
Then another 1 year holiday followed by 1 more year of Reclast.
Finally, 1 year of Evenity. (No holiday directly before the Evenity.)
I hope this answers your questions.
The options other than Fosamax have certainly expanded in recent years.

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Hi @firecracker! I have a similar drug profile which started back 24 yrs ago. Did Evista for 3 yrs, about 7 yrs of Actonel followed by a 13 yr drug holiday, then Fosamax for 2.5 years and last year a Reclast infusion which if the scan is correct greatly improved my spine. While my endo seems to think Prolia is next, I don't. Hope to do a drug holiday until my spine goes South and then go to a bone builder. I'm encouraged by your post. Prolia might be an option in 10 yrs when I'm 88 but maybe by then there will be something new.

REPLY
1 reply
awfultruth | @awfultruth | Nov 14 2:48pm
In reply to @firecracker "Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years..." + (show)
@firecracker

Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years were 70 mg (full strength).
I took an 18 month holiday before 5 more years of Fosamax. (A lot of Fosamax, I know.)
After another 1 year holiday, I had Reclast for 3 years.
Then another 1 year holiday followed by 1 more year of Reclast.
Finally, 1 year of Evenity. (No holiday directly before the Evenity.)
I hope this answers your questions.
The options other than Fosamax have certainly expanded in recent years.

Jump to this post

@firecracker That's just amazing getting great improvements in both spine and hip after all those years of bisphosphonates. Just Amazing!
Congratulations!!!!!!!!!

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1 reply
firecracker | @firecracker | Nov 14 11:42pm
In reply to @hungrybirder "Hi @firecracker! I have a similar drug profile which started back 24 yrs ago. Did Evista..." + (show)
@hungrybirder

Hi @firecracker! I have a similar drug profile which started back 24 yrs ago. Did Evista for 3 yrs, about 7 yrs of Actonel followed by a 13 yr drug holiday, then Fosamax for 2.5 years and last year a Reclast infusion which if the scan is correct greatly improved my spine. While my endo seems to think Prolia is next, I don't. Hope to do a drug holiday until my spine goes South and then go to a bone builder. I'm encouraged by your post. Prolia might be an option in 10 yrs when I'm 88 but maybe by then there will be something new.

Jump to this post

@hungrybirder, that's great that Reclast helped your spine so much! It helped mine a bit the first year and just kept it stable after that. I'm with you about Prolia. I will avoid it as long as possible.

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hungrybirder | @hungrybirder | Nov 15 11:40am
In reply to @awfultruth "@firecracker That's just amazing getting great improvements in both spine and hip after all those years..." + (show)
@awfultruth

@firecracker That's just amazing getting great improvements in both spine and hip after all those years of bisphosphonates. Just Amazing!
Congratulations!!!!!!!!!

Jump to this post

I'm just hoping the readings are correct. I have scoliosis and at L2 I've been at -3.6 so any improvement there would be great . Unfortunately only the overall value was posted so L2 is still a mystery. Have used the same hospital facility for the last 5 scans; fingers crossed!

REPLY
Judy Shepherd | @jdshep | Nov 19 1:13am
In reply to @judith73 "I also began taking Evenity in June. The initial injections were in the bicep muscles, and..." + (show)
@judith73

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

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I stRted Evenity in 3/2024
I just had my 9th injection. I has soreness in arm and started getting injection in my stomach area. I have had no further sorenesz at site. My main pro lem is aftdr #6 o began having bad arthrtic and muscle pain
Increase wLking pain and hip and femoral pain. I o ly hve 3 shots to go so I an trying to get it done. My problem is i need to have neck and rotator cuff surgegy and I am wonder if I can have it now or should wIt. I have ask 4 Di am r and no one has an answer. I a m in pain..

REPLY
2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Nov 19 9:17am
In reply to @jdshep "I stRted Evenity in 3/2024 I just had my 9th injection. I has soreness in arm..." + (show)
@jdshep

I stRted Evenity in 3/2024
I just had my 9th injection. I has soreness in arm and started getting injection in my stomach area. I have had no further sorenesz at site. My main pro lem is aftdr #6 o began having bad arthrtic and muscle pain
Increase wLking pain and hip and femoral pain. I o ly hve 3 shots to go so I an trying to get it done. My problem is i need to have neck and rotator cuff surgegy and I am wonder if I can have it now or should wIt. I have ask 4 Di am r and no one has an answer. I a m in pain..

Jump to this post

My word that is awful. I cannot tell you what you should do, but I can encourage you to talk to your doctor about this. I had some bone pain with some medications my doctor gave me and it felt like this sounds. Other people now are told to take Claritin with that drug and poof, no bone pain. Have you been discussing this with your doctor? Have you asked your doctor about surgery?

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1 reply
Judy Shepherd | @jdshep | Nov 19 9:57am
In reply to @auntieoakley "My word that is awful. I cannot tell you what you should do, but I can..." + (show)
@auntieoakley

My word that is awful. I cannot tell you what you should do, but I can encourage you to talk to your doctor about this. I had some bone pain with some medications my doctor gave me and it felt like this sounds. Other people now are told to take Claritin with that drug and poof, no bone pain. Have you been discussing this with your doctor? Have you asked your doctor about surgery?

Jump to this post

Yes I have ask 3 different Drs. No one can give me an answer. One lady on this site had hip replacement, one had oral surgery and one had "female surgery"
and all did great. That is all I can find out. So I will have shoulder surgery if I can get scheduled as it is the most painful and then take care of cervical surgery after Feb. When injections are done...?

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lisaselin | @lisaselin | 6 days ago
In reply to @artscaping "@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about..." + (show)
@artscaping

@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about "everything" has side effects. I think that is true and the challenge becomes to make sure Evenity or other bone medications don't have an interaction with our current drugs or treatments. I also have an allergy to sulfa drugs.....so you did have and now it is possible that you will not have an allergic reaction to sulfa. No more rolling on the carpet naked to take care of the itching. Now that I have the neuropathic itch, I don't need anything else.

Arlene, there is one question about Evenity, I think many of us would like to hear. How long do you take Evenity? 2 years? And then what? I always want to know what comes next to protect the bone that is developed.

You have my good wishes for a helpful outcome. Please check in with us as you begin this journey. You have persevered beautifully. Now all you have to do is share ........ not a bad deal.

Be safe and protected from inner and outer harm.
Chris

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Does evenity contain sulfa? I too am allergic to sulfa drugs.

REPLY
awfultruth | @awfultruth | 6 days ago
In reply to @jdshep "I stRted Evenity in 3/2024 I just had my 9th injection. I has soreness in arm..." + (show)
@jdshep

I stRted Evenity in 3/2024
I just had my 9th injection. I has soreness in arm and started getting injection in my stomach area. I have had no further sorenesz at site. My main pro lem is aftdr #6 o began having bad arthrtic and muscle pain
Increase wLking pain and hip and femoral pain. I o ly hve 3 shots to go so I an trying to get it done. My problem is i need to have neck and rotator cuff surgegy and I am wonder if I can have it now or should wIt. I have ask 4 Di am r and no one has an answer. I a m in pain..

Jump to this post

@jdshep I do not know how to think about Evenity and shoulder and neck surgery. There should be top doctors that have some ideas about this but I've never seen anything online about it. You could try the Evenity group on Facebook as another resource.

If you are convinced it is the Evenity causing the "extra" pain you are having like with walking and that that "extra" pain would just be too much on top of surgeries - well, you could just stop the Evenity now. Odds are high that most of the gains you will get with Evenity will have happened with 9 shots. I would guess about 90% or more. You could get a DXA early if you want to know exactly where you stand. It is possible to repeat Evenity or take another anabolic in the future if you need to gain more bone.
My point is there is nothing magical or medical that makes 1 year of Evenity set in stone.

REPLY
xiam2024 | @didi2024 | 6 days ago

Does anyone have experience or knowledge of Evenity provoking recurrence or predisposition to infection. That is mentioned as a risk (tuberculosis, hpv, etc.) in some reviews that I have read.

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