Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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@paala

I just completed my 7th injections. I have had hoarseness, fatigue and abdominal bloating after each injection but only lasting 2-3 days. This last set I again had hoarseness that has developed into a unrelenting cough. No fever, aches, nasal drainage or any other symptom. After 5 days of hoping it would fade the doc ruled out a cold or flu, chest x ray clear. I was given a Z Pack and Tessalon Perls. Tessalon did nothing. I can hardly hold a conversation without coughing up a lung.
Did you stop Evenity and if so did the cough and cold symptoms you experienced improve?

I do not want to go through another post injection event like this one again.
Thanks so much

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How long did the coughing and hoarseness last? I had two shots of Evenity in June and July and developed unrelenting cough and hoarseness. Drs have given me antibiotics, steroids, nasal sprays. I’ve been scoped and xrayed. I did not get a third shot bc convinced it’s a side effect. Worried how long this will last. Scheduled for an esophogram and ct lung scan next week.

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@katherinejane

How long did the coughing and hoarseness last? I had two shots of Evenity in June and July and developed unrelenting cough and hoarseness. Drs have given me antibiotics, steroids, nasal sprays. I’ve been scoped and xrayed. I did not get a third shot bc convinced it’s a side effect. Worried how long this will last. Scheduled for an esophogram and ct lung scan next week.

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Hello
I do hope by now your cough and hoarseness has improved. I did not seem to have the unrelenting situation with the cough as severe as you have. I'm so sorry. I did stop Evenity one shot early (I was trying to be a trooper) and then was put on Reclast. I had horrible unpredictable migraines that I have not had in the past. They lasted for the full year after the once a year infusion. I see a doc in mineral metabolism clinic and he did not think it was the Reclast. However, exactly one year after the Reclast infusion, all migraines stopped. Obviously, I refused any further Reclast. I am now on Alendronate weekly (just completed 2 months) and except for fatigue and a few aches, I've done fine.

I think you made a great decision in stopping the Evenity. These are all very potent drugs and only after thousands of patients have taken them can the true side effect profile be evaluated. I have friends who took Reclast without any side effects....my body hated that drug.
I hope everything works out OK for you and the cough and hoarseness have decreased. God bless you on this journey.
Paaula

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@nwyatt

I took Evenity for 11 months and finally stopped because of increasing back pain to the point of keeping me from doing anything. Dexa showed great improvement in my hip and some in my lumbar spine. Started Fosamax after 8 weeks off and after 3 days the intense back pain has returned. Not sure what to do next. I'm worried that Reclast will have the same effect. I don't want the "cure" to be worse than the problem. Any advice?

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I had 3 Evenity shots so far. I had back pain before I started Evenity for 3 months. Right now my lower back pain is behind control. My pain doctor is telling me that the pain is probably from old/ new fractures. But it is traveling from middle of my back to very lower part of my back. I just wanted to ask what kind of pain you encounter? All over your back? Is it starting in the morning and then progressed during the day? I appreciate your answers.

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@sunny65

I had 3 Evenity shots so far. I had back pain before I started Evenity for 3 months. Right now my lower back pain is behind control. My pain doctor is telling me that the pain is probably from old/ new fractures. But it is traveling from middle of my back to very lower part of my back. I just wanted to ask what kind of pain you encounter? All over your back? Is it starting in the morning and then progressed during the day? I appreciate your answers.

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I did not have back pain before starting Evenity, and my stayed in my upper to mid back. I do have 4 old compression fractures in my thoracic spine. It got worse the longer I was on Evenity. First it was just a few days and aleve or tylenol would help. By the 8th shot I was taking meloxicam every morning and tylenol all day. Then I started taking tramadol as needed. I made it through 11 shots before calling it quits. I still have some back pain but not like it was. I'm off the meloxicam because it eventually caused GI issues which I am still dealing with a month later. I still take tylenol and tramadol as needed. I have also had steroid injections in the most painful muscle knots in my back and I am getting a new MRI in a week to see the status of my spine. I'm now taking Forteo. I hope you can find relief for your pain.

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@nwyatt

I did not have back pain before starting Evenity, and my stayed in my upper to mid back. I do have 4 old compression fractures in my thoracic spine. It got worse the longer I was on Evenity. First it was just a few days and aleve or tylenol would help. By the 8th shot I was taking meloxicam every morning and tylenol all day. Then I started taking tramadol as needed. I made it through 11 shots before calling it quits. I still have some back pain but not like it was. I'm off the meloxicam because it eventually caused GI issues which I am still dealing with a month later. I still take tylenol and tramadol as needed. I have also had steroid injections in the most painful muscle knots in my back and I am getting a new MRI in a week to see the status of my spine. I'm now taking Forteo. I hope you can find relief for your pain.

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Thank you so much for replying. My back pain increased after Evenity shots especially in my vertebrae and sacrum where I have a compression fractures . I did a lot of tests and tried cortisone shots ( they didn’t improve my pain). My pain doctor planing to do nerve ablation and see if this works. I am willing to try anything. I also was on Meloxicam it didn’t help a bit. I been taking Tramadol every day- it just takes edge off the pain . My endocrinologist wants me to push through Evenity. Not sure if I am able. My numbers are not good and she might suggest Tymlos in the future. I hope your pain subsides. Please let me know how are you doing with Forteo.

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@sunny65

Thank you so much for replying. My back pain increased after Evenity shots especially in my vertebrae and sacrum where I have a compression fractures . I did a lot of tests and tried cortisone shots ( they didn’t improve my pain). My pain doctor planing to do nerve ablation and see if this works. I am willing to try anything. I also was on Meloxicam it didn’t help a bit. I been taking Tramadol every day- it just takes edge off the pain . My endocrinologist wants me to push through Evenity. Not sure if I am able. My numbers are not good and she might suggest Tymlos in the future. I hope your pain subsides. Please let me know how are you doing with Forteo.

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I had lower back pain especially with shots 4 and 5. I have increased drinkng a lot of water. I read how bones need a lot of water. My pain is gone except for the prior arthritis pain I had. I have now had 7 shots.

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@sunny65

Thank you so much for replying. My back pain increased after Evenity shots especially in my vertebrae and sacrum where I have a compression fractures . I did a lot of tests and tried cortisone shots ( they didn’t improve my pain). My pain doctor planing to do nerve ablation and see if this works. I am willing to try anything. I also was on Meloxicam it didn’t help a bit. I been taking Tramadol every day- it just takes edge off the pain . My endocrinologist wants me to push through Evenity. Not sure if I am able. My numbers are not good and she might suggest Tymlos in the future. I hope your pain subsides. Please let me know how are you doing with Forteo.

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So sorry about your pain. I'm only on my second month of Forteo but so far so good. I'll know more once these GI issues get resolved. I'm wondering if I'll need a nerve ablation at some point. I get burning and tingling and numbness in one particular spot on my back near the thoracic spine. Hopefully we'll get more info after my MRI. Do you take one tramadol pill each day? How much is it? I take mine in combination with tylenol arthritis but only as needed but lately that's been almost every day. Pain really affects quality of life.

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@nwyatt

So sorry about your pain. I'm only on my second month of Forteo but so far so good. I'll know more once these GI issues get resolved. I'm wondering if I'll need a nerve ablation at some point. I get burning and tingling and numbness in one particular spot on my back near the thoracic spine. Hopefully we'll get more info after my MRI. Do you take one tramadol pill each day? How much is it? I take mine in combination with tylenol arthritis but only as needed but lately that's been almost every day. Pain really affects quality of life.

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Thank you for writing to me. There are a lot of similarities between our back pain. I am not good with medication. My back pain started so suddenly and I was hoping that will lasts 3-4 weeks. It has been almost 6 months severe pain every single day. At the beginning I took ibuprofen and everything available over the counter-nothing helped.My pain doctor prescribed Tramadol. One pill worked for all day…for the first week. But soon I needed 2 along Tylenol then one more before night. I started noticing that doesn’t help anymore .I really hate being on Tramadol especially when it’s not helping . So , I decided to cut down and quit all together. I am not sure how much Evenity contributes to the pain. Will talk to endocrinologist next week. Probably next month I will try nerve ablation. I hope it gives some relief.

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I have had 6 Evenity injections so far and am hoping it’s my last. My headaches are relentless and all the headache medications I have tried only eases them for a few hours then they come back the next day. I cannot live with this head pain any longer! I also have aching in my face/cheeks and jaw.
The other side effect I have had is insomnia. Terrible. I sleep an average of 4 hours a night. And no longer than an hour or hour and a half each time. I’m awake most of the night then can maybe fall asleep again between 6-8 am. But that’s all.
I see my endocrinologist this week and will tell her I can’t keep living like this. I know she will just want me to try another medication but I seem to have bad side effects from all prescription drugs so maybe I will have to take a chance and hope I don’t get any fractures.
I haven’t had any fractures yet but I’ve just been lucky.
My last dexa scores in my spine were -4.4 and in my hip -2.8. My pcp was trying to get me to take Fosamax for years but I always refused because of possible scary side effects. But now that my scores are so bad I agreed to try Evenity. I’m really surprised at how many others say they haven’t had any side effects to this drug. You are so lucky!
Has anyone else experienced headaches and insomnia like this?

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@lynn3 can you have a DEXA to see where you are? I have read and been told that Evenity's strong bone building (as opposed to anti-resorptive) months are the first 6, so maybe you can stop and do a few Reclasts to "lock in" gains (or Fosamax).

I only did 4 months Evenity (but after 2 years of Tymlos). I had neuro side effects with Evenity (burning sensations, pins and needles etc. and yes, insomnia).

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