Is anyone on Levqio
I am a 43 year old female with multiple health issues including ashtma, a genetic gene for CAD and LAD, and an undiagnosed autoimmune disorder that causes inflammation in all organs and tissues. So far I had rhadnomyolyisis with rosuvastatin, atorvastatin, pravastatin, and ezemtibe. I also was tried on repatha and had severe abdonimal pain that sent me to the ER. My cardiologist wants to put me on levqio but I cannot find any info on if it may cause the severe inflammation in my digestive tract like the repatha did. All medication and supplements with biological or enzymes compontients have cause this severe inflammation.
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How do you determine they cause inflammation?
I cause it still unknown. Doctors will run tests for virus's, bacteria, and fungal infection but they come back negative however the inflammation markers in my lab work have always been high along with my white blood cell count. All tests to determine why my white blood cell count is high have come back negative. I am reguraly placed on steroids' to lower inflammation and now I am a immune suppressant medication and my white blood cell count is normal but all other inflammation markers a still high.
I'm trying to get Leqvio and have checked all the side effects. Nothing comes up for the digestive tract. One common side effect of Leqvio is UTIs, this concerns me. I won't know until I try it. You've had blood tests for Lp(a), APOB a Coronary CT angiogram, and a Cardio echogram? Do you have coronary heart disease? I have taken high dosages of most of the satins you have taken and I had the same digestive issues. Not knowing what was wrong I had an upper endoscopy, that showed I had an inflamed stomach, an abdomen CAT scan with and without contrast, a stomach emptying test, CAT of the pelvis with and without contrast. Nothing turned up. I stopped my statin for a month and then started on a low dose of 10mg of simvastatin with no digestive problems. I too hope I won't have digestive issues with Leqvio but I have to take it. I have high Lp(a), APOB, APOE4, and stage 2 CAD.
I, too did not do well with Repatha, sounds similar to what you describe. I have had 4 inclisiran injections and am doing good with it.
You mention immflamuation in all your organs and tissues. What symptoms, indications do you have with what organs?
My digestive system was the first one that was diagnosed with inflammation with unknown causes. According to my parents I would scream in pain 22 hours a day barely sleeping, I was lactose intolerant and soy formula also causes inflammation. However goats milk did not. Now they have the diagnosis as IBS since all tests have come back negative for any known causes. But I go from diarrhea to constipation a lot many times in the same day, my abdomen is always painful with a lot of gas. I cannot wear anything on my waist line because it is too painful. And I have bad acid reflux and sometimes the food I eat does not digest at all and comes out whole. My respiratory system started with tonsillitis that was constant from age 6-12. Again with no virial, bacteria, or fungal infection. The inflammation eventually causes my tonsils, adenoids, and 2 lymph nodes to become in a state a narcosis and all but the lymph nodes had to be removed. The same happened with my gums and at 27 I had to have all my teeth removed due to narcosis in their roots. On 2 occasions I had to have my uthera stretched due to the inflammation causes it to close and I could not urinate. Now I also feel like a am in the beginning stages of a UTI but again no infections. I also have to urinate about every 2 hours. My liver inflamed once and they tested me for every possible cause and could not find anything and then it just stopped. I have folliculitis often again with no signs of infections and have to use steriod gel to get the inflammation down and stop the itching. I have subcutaneous cysts a lot mostly under my breasts but that can pop up anywhere. 4 of them have been cut out and sent to labs for cultures and once again no bacteria. My skin is always itchy and gets red blotches on it from time to time that zinc (diaper rash cream) will help with. Back to respiratory I have had more cases of bronchitis and pneumonia where they have sent cultures out and sent swabs to test for all respiratory virus and they all come back negative. All my joints pop and are painful. I had severe migraines and they did 3 separate MRI's and tried me on many migraine medications. The MRI's showed nothing and none of the migraine medications helped. The migraines would get so bad I would loose my vison and hearing for a few minutes at a time. When amitriptyline worked they diagnosed it a fiber myalgia. My muscles ache all similar to flu aches but slightly different. It feels like I need to stretch them and that does help for a minute. Lab results I have a high white blood cell count and all tests for the reason have come back negative. But if I do get a viral or bacteria infection my WBC will quadruple. My inflammation markers are always high especially the A-CRP and the A-sedimentation rate. I also have very low creatine levels. When they put me on an immunosuppressant my white blood cell count is finally in normal range. The A-CRP and A-sedimentation rate dropped but both are still pretty high and my creatine levels are still low. But my Globulin levels are also finally in normal range. I think I covered most of the systems. Oh I forgot about the my pharynx and larynx also inflames with no known cause.
How incredibly frustrating it must be for you not to get the answers you need and to endure the daily pain you endure. Thank you for reaching out and sharing.... just groping at straws, could any part of this be related to hormones?
Dang, you have been dealing with one thing after another it sounds like for most of your life. I am so sorry! I was curious about what you are dealing with so that I could figure out what in my experience would possibly help. I have been working through systemic problems, some sounding similar to you and some not so much. I do know I can assure you Repatha and Inclisiran do not work the same way, I promise! I chose to work with my doctors to try Inclisiran and am happy thus far that I’ve do so.
I am including a link to Inclisiran prescribing information. You may want to check out the contraindication section that looks like was updated in June, 2024.
https://www.novartis.com/us-en/sites/novartis_us/files/leqvio.pdf
thank you for the link