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.

windyshores | @windyshores | Mar 28 2:38pm

Yes I have been told Tymlos is better for hip than Forteo and does not cause the cortical porosity mentioned by Leder as a result of Forteo. My hip gained 9% on Tymlos.

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1 reply
bluebonnet242 | @bluebonnet242 | Mar 28 2:49pm
In reply to @jenniferhunter "@bluebonnet242 It's good that you posted here where many members are active and will see your..." + (show)
@jenniferhunter

@bluebonnet242 It's good that you posted here where many members are active and will see your post. That's the benefit of finding an existing conversation to join instead of creating a new one.

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Thank you.

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bluebonnet242 | @bluebonnet242 | Mar 28 2:52pm
In reply to @windyshores "Yes I have been told Tymlos is better for hip than Forteo and does not cause..." + (show)
@windyshores

Yes I have been told Tymlos is better for hip than Forteo and does not cause the cortical porosity mentioned by Leder as a result of Forteo. My hip gained 9% on Tymlos.

Jump to this post

Thanks so much for the information! I feel a lot better as I had pretty much decided on Tymlos. I wish I could find a doctor that really knows what they’re doing. I did mention to my doc about starting at a lower dose and he was fine with it even though he did not know you could adjust the dose.
Is it ok for me to ask for doctor referral on this site?

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windyshores | @windyshores | Mar 28 2:54pm

Doctors don't know the Tymlos pen is adjustable!!

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awfultruth | @awfultruth | Mar 28 2:57pm
In reply to @bluebonnet242 "Hello all! I have been reading your comments and advice and am really appreciative I’ve found..." + (show)
@bluebonnet242

Hello all! I have been reading your comments and advice and am really appreciative I’ve found this site. I am unfortunately joining the osteoporosis club. I have no idea which medication to start on as my worst osteoporosis is in my hip and had a recent hip fracture. All of the meds are frightening. Here are my numbers:
AP Spine (L1, L3, L4) BMD - .713; T score - 3.1; Z score -1.4 Osteoporosis
Femoral neck - BMD - .578; T score - -2.4; z score -1.0 osteopenia
Total hip - BMD-.483; t score -3.8; z score -2.6 osteoporosis
I had thought to go on tymlos first and then reclast or evenity. Prolia seems to help the hip but is one of the scarier drugs. I’m 63 and thought to rebuild bone first. Any thoughts?

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@bluebonnet242, I chose Evenity myself (I'm 6 months in so no DXA results yet). I believe the summary of all the papers I looked at and talks by people that seemed well qualified put Evenity as having the creating the largest increases in bone density overall and in the hip. Probably the biggest argument against Evenity is that it's newer than Forteo and Tymlos so there could be problems that show up later that are not apparent now.
I agree Prolia is one of the scarier drugs and I don't want to use it.

BTW your t-score for you total hip is much worse than you femur neck. That seems odd to me. Anybody have any thoughts on that? Could that be a sign of something off in the DXA scan?

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2 replies
bluebonnet242 | @bluebonnet242 | Mar 28 3:28pm
In reply to @awfultruth "@bluebonnet242, I chose Evenity myself (I'm 6 months in so no DXA results yet). I believe..." + (show)
@awfultruth

@bluebonnet242, I chose Evenity myself (I'm 6 months in so no DXA results yet). I believe the summary of all the papers I looked at and talks by people that seemed well qualified put Evenity as having the creating the largest increases in bone density overall and in the hip. Probably the biggest argument against Evenity is that it's newer than Forteo and Tymlos so there could be problems that show up later that are not apparent now.
I agree Prolia is one of the scarier drugs and I don't want to use it.

BTW your t-score for you total hip is much worse than you femur neck. That seems odd to me. Anybody have any thoughts on that? Could that be a sign of something off in the DXA scan?

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Could I have been place incorrectly on the table when she was doing my hip, at least I think it for my hip, there was a triangular block with my legs on either side. She put the straps on and said the straps would hold me in place where I need to be and didn’t need to grip as I have done in the past? Would that make a difference?

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sallyj2 | @sallyj2 | Mar 28 4:42pm
In reply to @bluebonnet242 "Thank you for the reply. I had read your comments about starting low on Tymlos and..." + (show)
@bluebonnet242

Thank you for the reply. I had read your comments about starting low on Tymlos and that is one of the reasons I was interested and also a bone builder. I listened to a video featuring Dr. Leder, which someone had posted, and at the very end of the video, around 58-59 minute mark, he mentioned he would not put someone with low total hip or femoral neck scores on Teriparatide because bone density doesn’t go up at all in hip or femoral neck and cortoporosity in cortical aspects increases. He said to a lesser extent Tymlos.

So, have you heard this or maybe I misheard what he said since I don’t understand any of this. He did not say what he would give, unfortunately. I am completely overwhelmed by all of this and want to make the right decision as that will affect me going forward.

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I heard the same thing!! And, many people with low density in hips on this site haven’t seen much or any change in hips.

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1 reply
sallyj2 | @sallyj2 | Mar 28 5:05pm
In reply to @awfultruth "@bluebonnet242, I chose Evenity myself (I'm 6 months in so no DXA results yet). I believe..." + (show)
@awfultruth

@bluebonnet242, I chose Evenity myself (I'm 6 months in so no DXA results yet). I believe the summary of all the papers I looked at and talks by people that seemed well qualified put Evenity as having the creating the largest increases in bone density overall and in the hip. Probably the biggest argument against Evenity is that it's newer than Forteo and Tymlos so there could be problems that show up later that are not apparent now.
I agree Prolia is one of the scarier drugs and I don't want to use it.

BTW your t-score for you total hip is much worse than you femur neck. That seems odd to me. Anybody have any thoughts on that? Could that be a sign of something off in the DXA scan?

Jump to this post

My score is like that as well. Odd.

REPLY
windyshores | @windyshores | Mar 28 7:37pm
In reply to @sallyj2 "I heard the same thing!! And, many people with low density in hips on this site..." + (show)
@sallyj2

I heard the same thing!! And, many people with low density in hips on this site haven’t seen much or any change in hips.

Jump to this post

@sallyj2 I have posted a few times that I had a 9% gain in hip and 6% gain in femur neck as well as 20% gain in spine from Tymlos. My docs, and McCormick, said Tymlos does not increase cortical porosity the way Forteo does. Both are still good drugs and well-proven but especially for spine and yes, Forteo has sometimes affected porosity in the hip apparently.

REPLY
2 replies
sallyj2 | @sallyj2 | Mar 28 7:52pm
In reply to @windyshores "@sallyj2 I have posted a few times that I had a 9% gain in hip and..." + (show)
@windyshores

@sallyj2 I have posted a few times that I had a 9% gain in hip and 6% gain in femur neck as well as 20% gain in spine from Tymlos. My docs, and McCormick, said Tymlos does not increase cortical porosity the way Forteo does. Both are still good drugs and well-proven but especially for spine and yes, Forteo has sometimes affected porosity in the hip apparently.

Jump to this post

Thank you so much! This is good news!

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