Anyone taken Evinity without side affects

Posted by dreamjean1958 @dreamjean1958, Feb 14, 2023

I have a very severe case of Osteriporosis . WS on Forteo a yr . After being on Forteo. Your suppose to be put on a maintainence. I never was . My surgeon out of network. Prescribed Forteo. 2018 . I took for 13 months . My spine Dr . Or someone dropped the ball. I took calcium and Vit D 3 . My bones are now super bad . No medication was prescribed . I have fractured my foot twice in 2022 . 3 months apart. Still in a cast . Has anyone been prescribed Forteo ? Than didn’t get the drugs to maintain bone strength . I’m so upset. A yr of injections and beings the ball was dropped . I’m back at Day 1 . I’m assuming I will be prescribed EVinity . I’m a walking China Doll . Scared to take any of these meds .

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@awfultruth

@dreamjean1958, I've had 11 Evenity shots without any significant side effects. My side effects are so insignificant they are not worth mentioning. I had all shots in the tummy which was what I asked for.
I had a DXA that covered 10 of the shots and I had a 30% gain in LS. I went from a worst score of -4.1 LS to -2.2 LS. I couldn't believe it! My doctor said he had seen that before but I hadn't heard of it. I was secretly dreaming and hoping for 20% so this was beyond the pale. I had an experienced densitometrist check my previous and current scan to check for errors. He said they looked ok. I did eventually find one study where out of 29 treated with Evenity one patient got 20% and one got 30%.
Anyway great things are possible and it's certainly possible to have little to no reaction to Evenity.

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Hi @awfultruth congratulations! You are an outlier in the positive direction! Could you share how much 10mo evenity improved your hip and femoral neck? How about TBS improvement if your dxa report has that? Thanks a lot!

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@mayblin

Hi @awfultruth congratulations! You are an outlier in the positive direction! Could you share how much 10mo evenity improved your hip and femoral neck? How about TBS improvement if your dxa report has that? Thanks a lot!

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@mayblin Hi, thank you.
Well I was an outlier in the other direction in my hip. I increased 2.7% TH and 1.6% FN. So that was a bit disappointing but my spine was way way worse than my hips. I was -2.5 in FN and now I'm -2.4. I think 5% in those areas is more common with Evenity?

In the TBS I had a 3.1% increase for L1-L4 and a 2.93% increase L2-L4. Those are my calculations as the report does not show TBS percent changes. I actually had a slight decrease in TBS at one vertebrae.
In TBS numbers I increased from 1.191 L1-L4 to 1.228 L1-L4.
So my TBS numbers are perhaps worse than my DXA numbers? Certainly not great but I've not fractured so far and I have certainly had falls and opportunities for fracture. Knock on wood to continue that way.

The densitometrist who looked at the scans said it was odd that my hips were so little changed and my spine so much improved but he still said he could see no problems with the scans. He also said not to try to use the TBS "because it doesn’t seem to change very much compared to the precision error of the measurement. ". Still I'm going to factor it all in there and say overall it was just terrific. I'm no longer have osteoporosis numbers. Just osteopenia and most locations well away from the osteoporosis dividing line.

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@awfultruth

@mayblin Hi, thank you.
Well I was an outlier in the other direction in my hip. I increased 2.7% TH and 1.6% FN. So that was a bit disappointing but my spine was way way worse than my hips. I was -2.5 in FN and now I'm -2.4. I think 5% in those areas is more common with Evenity?

In the TBS I had a 3.1% increase for L1-L4 and a 2.93% increase L2-L4. Those are my calculations as the report does not show TBS percent changes. I actually had a slight decrease in TBS at one vertebrae.
In TBS numbers I increased from 1.191 L1-L4 to 1.228 L1-L4.
So my TBS numbers are perhaps worse than my DXA numbers? Certainly not great but I've not fractured so far and I have certainly had falls and opportunities for fracture. Knock on wood to continue that way.

The densitometrist who looked at the scans said it was odd that my hips were so little changed and my spine so much improved but he still said he could see no problems with the scans. He also said not to try to use the TBS "because it doesn’t seem to change very much compared to the precision error of the measurement. ". Still I'm going to factor it all in there and say overall it was just terrific. I'm no longer have osteoporosis numbers. Just osteopenia and most locations well away from the osteoporosis dividing line.

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Thank you very much for sharing @awfultruth! I'm happy for you but am envious of your results! Sometimes I do wonder if bmd increase is harder when the baseline bmd is not that bad, as with your hip and femoral neck. Nonetheless, it does seem improving bmd in these two areas is more challenging than trabacular bones in general.

Wish you the best in your future journey!

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@awfultruth

@dreamjean1958, I've had 11 Evenity shots without any significant side effects. My side effects are so insignificant they are not worth mentioning. I had all shots in the tummy which was what I asked for.
I had a DXA that covered 10 of the shots and I had a 30% gain in LS. I went from a worst score of -4.1 LS to -2.2 LS. I couldn't believe it! My doctor said he had seen that before but I hadn't heard of it. I was secretly dreaming and hoping for 20% so this was beyond the pale. I had an experienced densitometrist check my previous and current scan to check for errors. He said they looked ok. I did eventually find one study where out of 29 treated with Evenity one patient got 20% and one got 30%.
Anyway great things are possible and it's certainly possible to have little to no reaction to Evenity.

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Wow, congrats! Are you taking something after?

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@dreamjean thatis fantastic and so helpful to the rest of us. Did you have any fractures before Evenity?

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@awfultruth

@dreamjean1958, I've had 11 Evenity shots without any significant side effects. My side effects are so insignificant they are not worth mentioning. I had all shots in the tummy which was what I asked for.
I had a DXA that covered 10 of the shots and I had a 30% gain in LS. I went from a worst score of -4.1 LS to -2.2 LS. I couldn't believe it! My doctor said he had seen that before but I hadn't heard of it. I was secretly dreaming and hoping for 20% so this was beyond the pale. I had an experienced densitometrist check my previous and current scan to check for errors. He said they looked ok. I did eventually find one study where out of 29 treated with Evenity one patient got 20% and one got 30%.
Anyway great things are possible and it's certainly possible to have little to no reaction to Evenity.

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That is fantastic! We're you exercising, eating special or taking certain supplements?

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I had no side effects with 12 months of Evinity. Now I am taking Alendronate once a week to lock in gains.

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Can I ask your age? I am scared of heart issues.

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@bwaykm

Can I ask your age? I am scared of heart issues.

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@bwaykm the studies on Evenity that resulted in a black box warning showed no difference in risk between Evenity and placebo, and small (considered statistically significant) difference with alendronate. I have seen this latter result explained as because alendronate is slightly protective and also by chance.
You can look up the Arch and Frame studies and ask you doctor to explain.

I have afib with tachycardia and didn't have any heart issues with Evenity (I did have some neuro issues due to lupus).

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@pami

That is fantastic! We're you exercising, eating special or taking certain supplements?

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@pami Thank you, and yes I was doing all kinds of supportive stuff. The supportive stuff had not been enough in the past to stop me from continuing to lose bone. But I am more organized and consistent about it now than in the past. So while doing Evenity I was doing 2 days a week of LIFTMOR like heavy resistance exercise, 2 days of bodyweight core and therapeutic exercises, and 2 days of Beat Saber VR fun/exercise and 6-7 days of walking 2 miles with about half the walks being with a 16-18lb weighted vest. I was fairly consistent in getting all that done and I enjoy it as it makes me feel so much better.

I have a bizarre diet due to food sensitivities and I took calcium supplements to reach 1200-1500 mg of calcium a day. I think the calcium supplement fears are not well proven and are certainly not enough to make me go short on calcium while fighting bone loss. I took other supplements also - vitamin D, K2 MK4, magnesium citrate, and a few others. If I didn't have a bizillion food sensitivities I would eat a more varied diet and experiment with more supplements but I do not have that choice. Also I have for unknown reasons a huge need for protein (just to function and feel ok) hence I eat a really large amount of meat. Side note, I think many people would be healthier overall and bone wise with more protein.
All that said it was obviously Evenity that gave me that big boost. Maybe the other things I did supported and made possible more growth? I don't know but I like to think so.

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