1. < Osteoporosis & Bone Health

Post Evenity DEXA numbers

Posted by susanfalcon52 @susanfalcon52, Jun 7 5:48am

So, I have my results after 12 months on Evenity.
Lumbar spine went from-2.5 to -1.8.
Left hip went from-2.0 to -1.8.
For the right hip and right femoral neck,
there are no scores, presumably because they are now titanium.

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nwyatt | @nwyatt | Jul 7 7:29am
In reply to @gmom14 "@nwyatt I am supposed to begin Evenity ( unless I chicken out!) at the end of..." + (show)
@gmom14

@nwyatt I am supposed to begin Evenity ( unless I chicken out!) at the end of the month. After 12 months, it will be followed by Reclast. I have not taken any bone drugs since about 10+ yrs ago. I took Fosamax for about 1 week and felt so terrible that I stopped. Now my numbers are far worse, so I guess there is no more procrastination. Hoping that you have good success with your follow up treatment.

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May I ask how Fosamax made you feel terrible? Aches? Pains? Stomach?

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1 reply
susanfalcon52 | @susanfalcon52 | Jul 7 7:29am
In reply to @gmom14 "@nwyatt I am supposed to begin Evenity ( unless I chicken out!) at the end of..." + (show)
@gmom14

@nwyatt I am supposed to begin Evenity ( unless I chicken out!) at the end of the month. After 12 months, it will be followed by Reclast. I have not taken any bone drugs since about 10+ yrs ago. I took Fosamax for about 1 week and felt so terrible that I stopped. Now my numbers are far worse, so I guess there is no more procrastination. Hoping that you have good success with your follow up treatment.

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That has been my path - 12 months of Evenity, then Reclast. I have tolerated both drugs well.

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sunny65 | @sunny65 | Jul 7 8:41am
In reply to @beanieone "Hi @sunny65, I just finished Evenity on June 27 and had no side effects besides those..." + (show)
@beanieone

Hi @sunny65,

I just finished Evenity on June 27 and had no side effects besides those associated with getting a flu shot - redness, swelling, slight pain . . .

I was on Tymlos for 8-1/2 months with pretty much the same symptoms (plus several others) that you describe for Evenity. Half life for Evenity is about 13 days, so the symptoms may settle down around that time. You should at least make it known to your doc that you’re having these issues. I kept a daily diary while on Tymlos so I could give my doc a good description of what was happening.

I am so sorry to hear of your back pain! I, too had debilitating pain while on Tymlos, so I am in your corner! Is your back pain from a fracture or have you not been diagnosed as to why your back hurts?

It can be sometimes difficult to determine how one will react to OP meds (my doc didn’t pay any attention to my debilitating pain) so it can be trial and error.

I hope this gives you some insight about these meds. Please keep me apprised of how things are going for you. I wish you the best and hope things turn around for you . . . and quickly!

Cheers!

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Thank you so much for your reply.I hope you are doing well. I had back pain on and off for long time. This is completely different. It is so sharp that my life completely stopped for 4 months now and doctors didn’t give me specific answers. I think that pain is from fractured vertebrae, but my doctor thinks it is from annular tear and only his advice is PT which making me worse and Evenity probably not helping. I hope that side effects from Evenity will go away soon. Thinking of trying lymphatic massage and acupuncture.It supposed to help with inflammation. Only I can do it’s hope.😔

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1 reply
pami | @pami | Jul 7 8:47am
In reply to @sunny65 "I just started Evenity July 2. After 3 days I started having dizziness, nausea and unusual..." + (show)
@sunny65

I just started Evenity July 2. After 3 days I started having dizziness, nausea and unusual fast heartbeat 98-99. Not sure if this temporary or will continue for a long time. Please let me know about your experience. I been suffering from debilitating back pain every day for almost 4 months now and side effects from Evenity making my life more miserable.

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I am sorry you are feeling ill after taking Evenity. I didn't know those symptoms were a side effect to Evenity. I just had my 5th shots. I honestly thought about not having them because I had a reaction with my 4th shots. I always get one shot in each arm and had never even felt them during or after. After my 4th shots my arm got large raised red rashes that itched. I put cortisone cream on them and took Benadryl. That got rid of it. I called the infusion center and they told me to take Claritin before my shots. I did for my 5th shots and had no problem. I have had tenderness for 2 days which is going away. My back hurt the first month or two of Evenity. That pain has gone away and it feels much better. So glad I didn't give up on it!

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1 reply
sunny65 | @sunny65 | Jul 7 10:34am
In reply to @pami "I am sorry you are feeling ill after taking Evenity. I didn't know those symptoms were..." + (show)
@pami

I am sorry you are feeling ill after taking Evenity. I didn't know those symptoms were a side effect to Evenity. I just had my 5th shots. I honestly thought about not having them because I had a reaction with my 4th shots. I always get one shot in each arm and had never even felt them during or after. After my 4th shots my arm got large raised red rashes that itched. I put cortisone cream on them and took Benadryl. That got rid of it. I called the infusion center and they told me to take Claritin before my shots. I did for my 5th shots and had no problem. I have had tenderness for 2 days which is going away. My back hurt the first month or two of Evenity. That pain has gone away and it feels much better. So glad I didn't give up on it!

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My endocrinologist suggested to have shots in abdomen. I had a minor soreness for a couple days. It wasn’t an issue. My bigger problem is dizziness, fatigue. I had back pain prior Eventy. It’s very intense now and starts morning and before started afternoon. I hope it goes away someday. I am not thinking to give up just yet. I am glad that you not giving up. Fractures are not fun and very painful. Please keep me posted. Best wishes.

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laurensb | @laurensb | Jul 7 4:39pm

Met with my endocrinologist after finishing Evenity and getting good results. I was given the choice of Prolia or Alendronate. I had been on Alendronate for six years total on and off beginning 2013 with my last dose Jan 2022. I opted for going back on Alendronate since I am only 69 and it seemed too early to start Prolia.

I tolerated the Alendronate well previously so don't expect any problems.

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2 replies
beanieone | @beanieone | Jul 7 4:49pm
In reply to @laurensb "Met with my endocrinologist after finishing Evenity and getting good results. I was given the choice..." + (show)
@laurensb

Met with my endocrinologist after finishing Evenity and getting good results. I was given the choice of Prolia or Alendronate. I had been on Alendronate for six years total on and off beginning 2013 with my last dose Jan 2022. I opted for going back on Alendronate since I am only 69 and it seemed too early to start Prolia.

I tolerated the Alendronate well previously so don't expect any problems.

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Hi @laurensb

I agree with your thoughts about Prolia - I am also 69 and my doc wants me to start it this month. Thanks to the members here who alerted me to "once on Prolia, always on Prolia." I'll be trying to go back to Reclast which has worked well for me in the past. However, I may have had too many lifetime infusions already.

I would happily take Fosamax, but because of the side effects I've had from Tymlos, I have GERD and don't think I'll be able to tolerate it.

I wish you well! Cheers!

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beanieone | @beanieone | Jul 7 5:01pm
In reply to @sunny65 "Thank you so much for your reply.I hope you are doing well. I had back pain..." + (show)
@sunny65

Thank you so much for your reply.I hope you are doing well. I had back pain on and off for long time. This is completely different. It is so sharp that my life completely stopped for 4 months now and doctors didn’t give me specific answers. I think that pain is from fractured vertebrae, but my doctor thinks it is from annular tear and only his advice is PT which making me worse and Evenity probably not helping. I hope that side effects from Evenity will go away soon. Thinking of trying lymphatic massage and acupuncture.It supposed to help with inflammation. Only I can do it’s hope.😔

Jump to this post

Aw, @sunny65,

I really hope this pain goes away for you. Have you asked your rheumatologist or PCP if a spinal x-ray is in order? It sounds like an annular tear would be more of an MRI situation. I had my first fracture in 2017 it - even tho' I had OP, I had never heard of compression fractures prior to that. The pain was debilitating and took some time to heal. My doc discovered it when a "just to rule out a fracture" x-ray was done, three or so years after the CF. The other three were "silent" frax and didn't cause any real pain. I did, however, have some life-altering issues with Tymlos, similar to what you describe.

Perhaps docs should instruct those of us who have OP how to lift, bend, not to twist and, above all, never, never, never shovel snow! Listen to your body and what it tells you.

Please stay in touch! All the best!

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1 reply
laurensb | @laurensb | Jul 8 6:09am
In reply to @nwyatt "May I ask how Fosamax made you feel terrible? Aches? Pains? Stomach?" + (show)
@nwyatt

May I ask how Fosamax made you feel terrible? Aches? Pains? Stomach?

Jump to this post

I tolerate alendronate well but I always drink more water than recommended and I wait at least an hour before eating or drinking anything else. Good luck

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1 reply
nwyatt | @nwyatt | Jul 8 6:30am
In reply to @laurensb "I tolerate alendronate well but I always drink more water than recommended and I wait at..." + (show)
@laurensb

I tolerate alendronate well but I always drink more water than recommended and I wait at least an hour before eating or drinking anything else. Good luck

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Thanks! Hoping it all goes well! How long have you been on it?

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