Evenity Side Effects

Posted by cincy @cincy, Dec 27, 2023

Has anyone had severe back pain and burning sensation on Evenity after just starting ?And how long does it last or is it a sign to try another medication?It starts about 7 days after the injection and pain is severe you can’t do a thing.Thanks.

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@windyshores

So just to share progress so far today:

My endo called me last night and ordered CTX and P1NP and I made a lab appt. for tomorrow, fasting. He does not usually do these tests and explained that they don't tell us everything that is going on with bone. (McCormick and my other endo do rely on them with caveats.)

I got a cancellation appointment with an allergist today (I really like him, used him before) and he does not think my immediate reaction of abdominal tightness after Evenity was an allergy. He said side effects can in fact happen quickly and also that the monoclonal antibody rososozumab (Evenity) is a large molecule/protein and the body may not recognize it (18% of us develop antibodies by the way, that do not affect effectiveness). So there could be a sort of reaction that is not allergy, but it could also be a side effect. He suggests doing shots in thigh, pausing between, and doing injections in a hospital office where I can be monitored.

The reaction I had was this intense tightness (felt hard to breathe) below the diaphragm for 4 days with some tingling of hands and feet- after the shot. In the last two days it has come back more, even though I had the shot on Dec. 26th. Last night my daughter slept in the room with me and said I was distressed in my sleep and breathing deeply and very fast and I woke up feeling unable to breathe. It was just my chest tightness. My lungs were fine,

But guess what? I am inclined to do Evenity again regardless. I feel like this is my last chance for full effectiveness of bone builders though they will still work 50-60% after Reclast. Tymlos gave me huge gains but my femur neck is still -3.6 (more cortical and Evenity helps with that- Reclast may too, I need to find out). Question is, how much should I endure in terms of side effects for how much gain?

On Tuesday I see a second endo who does rely on CTX and P1NP and does them frequently. I will discuss side effects with her. I can check just about every one on the list! Next Evenity is scheduled for Thursday. In the meantime I am trying to schedule Reclast in case I decide to do that now instead. Whew!

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@windswept you are a real trooper!

I read from one article stating the immunogenicity elicited by romosozumab does not affect the med's effectiveness.

Hope your body get customed to the drug after repeated shots and hence less side effects in the future.

Best wishes

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@mayblin

@windswept you are a real trooper!

I read from one article stating the immunogenicity elicited by romosozumab does not affect the med's effectiveness.

Hope your body get customed to the drug after repeated shots and hence less side effects in the future.

Best wishes

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My endo agreed when I said I would like to do at least 3 sets of injections, for the period when Evenity is the strongest bone builder. I saw a graph that showed the P1NP skyrocketed with one set of shots, within weeks. After 6 months it is more anti-resorptive so I could switch to Reclast then. Of course Reclast is no picnic either but not much choice.

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A curious is Prolia an option after tymlos? Is evenity a better choice?

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@jmmjml

A curious is Prolia an option after tymlos? Is evenity a better choice?

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@jmmjml my docs don't do either Prolia or Evenity after Tymlos. I pestered them about trying Evenity because my femur neck is still -3.6 but I had great gains in spine and hip. My docs avoid Prolia whenever possible and generally prescribe Reclast or, if Reclast is not tolerable, Fosamax.

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@windyshores

@jmmjml my docs don't do either Prolia or Evenity after Tymlos. I pestered them about trying Evenity because my femur neck is still -3.6 but I had great gains in spine and hip. My docs avoid Prolia whenever possible and generally prescribe Reclast or, if Reclast is not tolerable, Fosamax.

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Just curious why they avoid prolia. My sister is on Prolia after taking Forteo and I’m just curious because she’s has new fractures in her feet. After your incredible helping guidance, I started Tymlos three months ago ramping it up and I’m successful at 80. I still have a long ways to go but was just wanting to gather information. I have a couple other questions one I’m on 20 mg of Pepcid every night and wondered if that’s going to effect the absorption of tymlos. my doctor doesn’t think so but I don’t really know if he knows truthfully. Also, is it really hard to get an appointment with Dr. McCormick? Thank you again you’ve been so incredibly helpful with your posts!!!!!

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@jmmjml

Just curious why they avoid prolia. My sister is on Prolia after taking Forteo and I’m just curious because she’s has new fractures in her feet. After your incredible helping guidance, I started Tymlos three months ago ramping it up and I’m successful at 80. I still have a long ways to go but was just wanting to gather information. I have a couple other questions one I’m on 20 mg of Pepcid every night and wondered if that’s going to effect the absorption of tymlos. my doctor doesn’t think so but I don’t really know if he knows truthfully. Also, is it really hard to get an appointment with Dr. McCormick? Thank you again you’ve been so incredibly helpful with your posts!!!!!

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Dr. McCormick's assistant told me they are inundated. I talked with him last week. He has no magic answers. Do you have a doctor you trust? McCormick is very knowledgeable and caring though. His initial consultation is hard to get, I imagine, and costs $300- and requires a lot of records and info from us. After that it is $85 for 15 minutes and easier to get.

I am so glad that ramping up worked for you and you reached full dose! Yay!

You and your sister could watch Dr. Ben Leder's video on You Tube entitled "Combinations and Sequencing" or read McCormick's "Great Bones." The issue with Prolia is that it is hard to get off. You transition to Reclast but the timing is tricky.

Long term Prolia can cause atypical femur fractures.

Reclast and Fosamax stick around in the body longer so the same drop in density and rise in fracture risk apparently doesn't happen.

I am curious why the Pepcid would interfere with the Tymlos. I have to say I weaned myself off by slowly decreasing the dose, even cutting it in half. I have read that the body increases acid production in response to Pepcid as well as Prilosec and so we are worse off when we try to stop. So I had to withdraw gradually. I now avoid eating after 5 and sleep upright if I can and still take it maybe twice a month but mainly take Tums.

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My CTX after 2 years Tymlos and one set of Evenity injections was 145 (reference 152-858 for 70+).

On 2/22/20 it was 324, before Tymlos (but not fasting and 10:30am)
The others were fasting and all around 9 am:
5/23/23 165 (18 month of Tymlos)
7/15/23 186
1/26/24 145

Doc said studies showed no need to test CTX before transitioning to Reclast or other bisphosphonate. She convinced me.

I am going in for second set of Evenity injections today. The dose for a 150lb woman is 3mg/kg = 210mg. I weigh 104 so about 2/3 that study weight. It makes sense to me that my dose should be around 140mg. One shot is 105mg. I have already told them and gotten agreement that I can have a pause between shots to see how I am reacting this time. If I react again, I will decline the second shot. This would be a little over 2mg/kg and still help but effectiveness might be reduced by 1/3.

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As I wrote before, allergist said I should pause between shots to ascertain effect before having second one. Nurse said I could only have a one minute pause. I got her to wait three. I decided against the second injection. Thigh injections are absorbed more slowly that tummy. By the time I got to my car, same burning band of tightness in mid abdomen, but more tolerable than two injections last month (when reaction was fast and intense).

Again initial studies used weight (kg) to determine dose. The company standardized dose for 150lbs , basically, which leaves some of us with too much in my view. But one shot is slightly too little. (See my previous post.) One shot will mean about 10% increase in density versus 16%.

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@windyshores

As I wrote before, allergist said I should pause between shots to ascertain effect before having second one. Nurse said I could only have a one minute pause. I got her to wait three. I decided against the second injection. Thigh injections are absorbed more slowly that tummy. By the time I got to my car, same burning band of tightness in mid abdomen, but more tolerable than two injections last month (when reaction was fast and intense).

Again initial studies used weight (kg) to determine dose. The company standardized dose for 150lbs , basically, which leaves some of us with too much in my view. But one shot is slightly too little. (See my previous post.) One shot will mean about 10% increase in density versus 16%.

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windyshores,
I hope you have an easy, pain free day today. Keep us posted.

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@susanfalcon52

windyshores,
I hope you have an easy, pain free day today. Keep us posted.

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Thank you @susanfalcon2. Same side effects but much less intense and very tolerable. Burning tightness across lower chest, weird dreams. If I can do one shot I can do Evenity longer term. I looked into doing it at home so I could customize dose!! I feel like Goldilocks: one syringe is too little and two is too much. My docs give me reduced dosages of everything. Hoping doc is on board.

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