Evenity and Cardio Warning? how significant?

Posted by dmshope @dmshope, Mar 4 12:36pm

Evenity had 2 trials ( Fraime and Arch) one showed increased cardio events while the other did not. What has anyone done to screen for potential risks of Evenity as it relates to its cardio warning? I have no history of cardio issues or stroke; blood pressure is low; no diabetes. . My cholestral is ususally low but since I am on full fat milk and ghee ( to gain some weight ) it has slightly increased. One endo who is very cautious and wants a full cardiologist reveiw. Another looked at my history and says I am a perfect candidate. Has anyone had expereince with cardio screening for Evenity ? thank you in advance.

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@gently

dmshope,
we don't even know how unique your situation is. So many adverse effects are never examined as consquence of the medication. Cheers to your diligence. I've learned something very interesting about Tymlos and Forteo.

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TYmlos is a very good drugs , able to be adminstered in small doses as the body acclimates. Tymlos was my only choice and benefited me as best it could and I am very appreciative.
Otheres will have different side effects - i started with severe heart palpatations and learned thaat coconut water ( 3-4 cups) throughout the day was the key to managing those heart pounding symptoms. THe stomach issues began about 7 months into the course of treatment and that too was figured out. I have faith that issues can be analyzed as best we can and try to manage as best we can. I was put on actonel temporarily after tymlos. Actonel has a gastiric warning which is well known. Although I do not have gastiric GERD issues, Before begiinng Actonel I was guided to begin to strenghthen the mucosa lining of stomach to minmize damage. Instead of gastric issues, Actonel gave me a acute phase flu infection reaction - which lasted 7-8 days. May we all find a path to recvery while helpin each other and sharing our positive energy for healing our bones.

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@hmb72

I have had no heart issues, a relatively good cardiac calcium score, no diabetes, high blood pressure, stable bronchiectisis. I had a terrible reaction to Evenity. The target in Evenity is Sclerostin. That protein is present in my lungs. I suspect, but can not prove that my reaction was because of the effect of Evenity on my lungs. If one has a bad heart, I'd expect that any lung damage would cause more heart problems. Please see attached for scholarly articles.

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You said you took Evenity for two months but quit due to lung problems. Can you explain the symptoms you had and how soon they started after your first dose? Do you now have permanent lung damage? I am curious what your doctors had to say about this and if this is side effect is mentioned in the Amgen literature? My dr is suggesting Evenity but your experience and that of others is making me very anxious about taking Evenity. Also did you report this to the FDA? Thank you.

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Within a day of my first Evenity shot, I was exhausted beyond belief. The entire month I was just barely able to do my chores (avid horse owner/rider). I was so fit and active that the change surprised me. I told the Osteo that I felt like I had a major infection and asked to change drugs. He urged me to try once more, which unfortunately I did. The second shot hit me hard again. I woke up one morning coughing so hard that I could not catch my breath. I'm very stoic, so I just trudged on. Within a few weeks, I had what I thought was a bronchiectasis flare up. I had stable bronchiectasis from 2006 pneumonia - with no flares until 2024 Evenity shot. I could not breath; my FEV was very low and my heart rate very high. My PCP prescribed antibiotic and pred. I did not relate it to the Evenity at that time. By the time I next saw my Osteo, I had located several articles about the effect of Sclerostin on the lungs, as well as ILD resulting from monoclonial antibody drugs. My Osteo sent me to get a lung function test - surprisingly low. Recent bronchoscope showed severe edema, plus infection. I don't know if it will be permanent. Of course, none of this can be proven to be caused by Evenity. Especially since the time to get these pulmonology appointments far exceeds the ability to link 'cause and effect'. But, as a retired pharmaceutical professional, I can see potential relationship given the literature (18 year symptom free until immediately after Evenity). I did make several reports along the way in the FDA database to document the symptoms. Effect to lung is not mentioned on the label. The articles below mention that time to onset of problems is not immediate - an important point.

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@hmb72

Within a day of my first Evenity shot, I was exhausted beyond belief. The entire month I was just barely able to do my chores (avid horse owner/rider). I was so fit and active that the change surprised me. I told the Osteo that I felt like I had a major infection and asked to change drugs. He urged me to try once more, which unfortunately I did. The second shot hit me hard again. I woke up one morning coughing so hard that I could not catch my breath. I'm very stoic, so I just trudged on. Within a few weeks, I had what I thought was a bronchiectasis flare up. I had stable bronchiectasis from 2006 pneumonia - with no flares until 2024 Evenity shot. I could not breath; my FEV was very low and my heart rate very high. My PCP prescribed antibiotic and pred. I did not relate it to the Evenity at that time. By the time I next saw my Osteo, I had located several articles about the effect of Sclerostin on the lungs, as well as ILD resulting from monoclonial antibody drugs. My Osteo sent me to get a lung function test - surprisingly low. Recent bronchoscope showed severe edema, plus infection. I don't know if it will be permanent. Of course, none of this can be proven to be caused by Evenity. Especially since the time to get these pulmonology appointments far exceeds the ability to link 'cause and effect'. But, as a retired pharmaceutical professional, I can see potential relationship given the literature (18 year symptom free until immediately after Evenity). I did make several reports along the way in the FDA database to document the symptoms. Effect to lung is not mentioned on the label. The articles below mention that time to onset of problems is not immediate - an important point.

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SO very sorry for your unfortuante respeonses.... gosh. I hope you get stabilized and heal so that you can fully recover. We do our best to choose meds wisely,
At first Tymlos made me so exhausted it was hard to pick up a spoon of cereal ..( my doc did not believe it) . I did not have the energy to talk and could not sing at church..... HOwever I restarted at a very small dose and then built up. I eventualy was fine at full dose. Actonel gave me a brochitiis /sinus infection flu but over the weeks that is gradually improving....

I dont know if Evenity has a gradual doing option but perhaps is is worth asking.

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Evenity comes in 2 syringes with both administered each month. It is possible to refuse the 2nd syringe. My hope is to proactively work with an Endo who will allow me take one syringe each month.

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@dmshope

SO very sorry for your unfortuante respeonses.... gosh. I hope you get stabilized and heal so that you can fully recover. We do our best to choose meds wisely,
At first Tymlos made me so exhausted it was hard to pick up a spoon of cereal ..( my doc did not believe it) . I did not have the energy to talk and could not sing at church..... HOwever I restarted at a very small dose and then built up. I eventualy was fine at full dose. Actonel gave me a brochitiis /sinus infection flu but over the weeks that is gradually improving....

I dont know if Evenity has a gradual doing option but perhaps is is worth asking.

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Thank you for your kind words. I'm not at all keen on continuing with Evenity. For me, the risk outweighs the rewards.

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Has anyone taken only half dose of Evenity? What were the results? Were there less side effects? Thank you in advance for the comments. I am very sentitive - and very responsive. I respond with full force to a drug so whereas someone might need a full dose, i only take a quarter or a half. This is also true with vitamins and nutrients. I usually only need half dose to recieve almost the full benefit.

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