Anyone stopped taking Repatha after trying?

Yes, I stopped. I have always had a normal blood pressure of 117/170 and I was on Repatha for about six months and every other week when I took the shot I would have high blood pressure for four days afterwards and then it would subside but by this last time that I took it the blood pressure went to 189/121with no chance of it coming down so I was rushed to the hospital as a possible stroke candidate. They diagnosed it as an anxiety attack. Here’s a thing I don’t get anxiety either as a Norman course so I’m noticing that with the Repath, I’m far more anxious and I have this high blood pressure so I stopped it. But I really want it back again because it was doing such wonders to my cholesterol. So i’m thinking a month has gone by. I’m perfectly normal again. I’m going to try it again to make sure it wasn’t a coincidence but I am scared that if I go to the doctor, they’ll try to give me another medication in place of this medication or in addition too.

I stopped Repatha too. It caused bronchitis like symptoms for me. I know that’s very different from what you are experiencing but the point is, this stuff is a form of poison for our bodies. I believe side effects are significantly underreported and dismissed by the drug industry. They switched me to Leqvio and I had the same response. I now refuse additional “experiments” on my overall wellbeing.

I'm taking my last dose in a couple of weeks. My experience has been pretty similar than everyone else. Every single pain I have experienced in my life came back after the third dose of repatha. I started PT and OT for my hands, knees, neck, elbows, wrists. My BP has been a roller coaster especially around the time of my injection, and I started to have arrhythmia too, and because of the constant dismissal of my cardiologist about the side effects being related to repatha I decided I have to stop. I was also on effexor and shortly after I started repatha I was waking up at night fully conscious like if I had never gone to bed, I had nightmares every night so I requested my other Dr. for a safe way to get off of Effexor and continue with repatha. After I stopped Effexor the nightmares went away and I wake up at night sleepy, the way it should be. I'm tired of feeling achy all the time, I have no strength to do daily stuff but I'm forcing myself to do gardening and go out to keep myself a bit active. I can't take other statins or pain medicine because my liver reacts really crazy by keep raising my enzymes (but sometimes I have to do it to be able to function). I also was diagnosed with prediabetes shortly after being on repatha, after all the efforts I made to lower my A1C to a healthy levels, now A1C is back up. I just hope all of these side effects go away after I stop repatha, I read that some people get high cholesterol rebound after stop but as someone else mentioned: you have to think of the quality of life this drug is affecting greatly in your personal case and decide.

@advocate4me
I started having bad muscle pain after my second dose of Repatha. I’ve had a couple more doses since and two days after each injection the pain got worse. I have an MRI scheduled in a couple weeks to see if there’s any pathology. Internal Medicine docs think it’s sciatica and unrelated to the Repatha. However, my physical therapist thought there was no lumbar involvement. For now I had to quit physical therapy because the pain just got worse. My Cardiologist took me off the Repatha for 3 months in case my pain is related but thinks it’s coincidence that the pain started with the Repatha. It’s only been a little over 2 weeks since my last injection so have a long way to go before we can make a determination. All I can say is that the pain can get horrific!

After first shot, had severe upper respiratory symptoms with severe productive coughing. No temperature or signs of an infection, but lungs were very affected and painful by the end of the first week. The second week, the upper-respiratory issues were slightly less, , but my heart began to ache. Will not take a second dose. Cannot wait to get this drug out of my system.

I am on my second try and just seem to feel crappy all over again. My muscles and tendons just seem to flair and fatigue. I have nausea but also thought it was cortisol issues. I am so confused. I am ready to stop it again for 2 months and see how I feel.

@kallettla Are there new drugs coming out? I am just cholesterol drug intolerant.

@loyd1957 there is going to be a way to change your DNA so it mimics those lucky people who don't make much cholesterol. But before that there are going to be some LP (a) lowering drugs.

Have you tried Zetia? I am tolerating that. It working in the intestine, not in the liver like statins and Nexletol. I can't seem to take ones that work in my liver. Perhaps you could tolerate Nexletol?

There are bile reducers too. They work in the intestines. I have a prescription for one, but the pills are huge and I am afraid of choking on it. I tried a powdered version but it has artificial sweetener in it and I don't put that into my body. It was delicious though! If you don't care, it might work for you. If you are interested I will find the names of them.

But have you tried Zetia? It lowers my cholesterol a bit.

My sister takes sterols and stanols, and that has reduced her cholesterol. I am going to try it. I usually buy the brand NOW for vitamins and supplements.

I am trying to up my psyllium. I tolerate it well, I just have to take it more regularly.

I was taking Benecol chews, but the price went up and the size went down. I stopped ordering it because it was just too expensive. You can get it through the company and also Amazon.

Best wishes. Karen

@loyd1957 I just restarted last week and spent the first 3 days feeling really awful! It felt like I had the most terrible flu — every muscle ached (especially my legs and hips) and I could not stay awake as I was so exhausted.

@scpatient24
Update. In December, had a simple URI virus, could not get better. Have myself three weeks to get better, no medications worked. Still having ongoing GI issues. Knowing and confirming that my cholesterol med’s worsens URI, I stopped my cholesterol med’s. Not recommended

My body slowly has healed. My GI issues are 95+% percent better. I have a life and can travel. I GI specialist said he was sure the cholesterol med’s were keeping my GI track inflamed. I had additionally developed cognitive issues that I tried to ignore/deny.

So they want to start me back on Nexletol and readd pravastatin. I’ll try one more time, but if laying in bed/staying in the bathroom/and acting like a dementia patient is the result, this will be a short trial.