Anyone stopped taking Repatha after trying?

I stopped it after the second dose because I had tingling of my mouth and lips. I have Mast Cell Activation Syndrome and my allergies are from chemicals in the air like fragrances. I am not going to cause myself to have anaphylaxis. I quit. I can't take statins, nexletol or Zetia either due to them all causing severe pain and other muscular issues. AI told me that some people just can't take cholesterol lowering drugs. I may be one of them. I am hoping the LP (a) lowering drugs will help me when they come out.

@kallettla I cant take statins either, the side effects are awful. Repatha side effects are terrible too, so Im just sticking with a healthy diet. Come what may.

Don’t take anymore of this drug… I’ve been in the hospital 4 times due to severe angioedema. Tongue, face and eyes swelled.

Hi @bethrva, and welcome to Mayo Clinic Connect! I am sorry you are experiencing all-over symptoms after taking Repatha. You are so wise to recognize and report it to your doctor right away. A lot of people have great success with Repatha. However, your experience certainly also sounds reasonable and there are other options.

I believe the half-life of this drug is somewhere between 14-17 days, so the amount in your body will increase with your second dose. It will also take several months to get out of your system.

I have genetically high cholesterol and my highest untreated LDL over the years has been what you say your cholesterol is. I took a 3 month break from Repatha after my experience with the drug. Side effects had crept up on me and I got a wake-up call the night after my 9th injection. I thought I felt better after this break and briefly tried Praluent one time, then was done. I quit taking all cholesterol drugs and started LDL apheresis treatments every other week that removed cholesterol from my blood, a process similar to dialysis. I agreed to try Repatha again and it was miserable. Fast forward to now as a cardiology patient at Mayo Clinic MN, my cholesterol is under control for the first time ever AND no more apheresis treatments. It has been a rough road. My encouragement to you is to stay as active as you can through this process.

- You may want to ask your doctor about inclisiran. I was told it is the same as Repatha but in my experience (and my current doctor’s explanation) it is not. https://www.drugs.com/medical-answers/difference-between-leqvio-repatha-3571911/
- I have utmost confidence that Mayo Clinic Cardiology can help you. You may want to contact them to see what your options are. http://mayocl.in/1mtmR63

Is 375 your total cholesterol? If you are comfortable sharing, do you have other challenges with your health?

@jlharsh
Has anyone experienced shortness of breath while lying flat on on your. Side with reaptha? AI says it is linked to portal hypertension then another says no. I had no issues until 6 weeks ago now arrhythmia and shortness of breath especially lying down

I've been on Rapatha for several years now and it's now suspected that the long-term side effects include muscle stiffness, increased inflammation, and even the possible development of Rheumatoid arthritis and/or like symptoms. I'm also experiencing some loss of balance and light headedness, etc.

Just yesterday my primary care physician & I have decided to stop taking the medication while monitoring my cholesterol levels during this process. Hopefully any side effects that are being caused by the Rapatha can be reversed with time but only time will tell. I sure hope so as these current symptoms have completely wrecked my lifestyle, which includes a lot of outdoor activities. I'll keep you posted.

Hi all,

I just wanted to post my experience and reactions to Repatha. Hopefully this information may help someone down the road as well. First off, I have genetic "familial" cholesterol as did my mother. I have tried numerous statins, they all worked, but I had intolerable side effects to all of them including tendon pain in my wrists. During my LDL journey I have journaled my reactions, and recoveries, of every medication I was given.

The week of my first Repatha injection, May 5th, I had normal mild symptoms. By the second week the symptoms increased but were tolerable. The week of my second injection, May 19th, the normal symptoms I had experienced increased and then I started having major reactions by May 21st. Over the next six days the reaction that I was having escalated to the point that I could hardly walk, could not climb lite stairs, and I was in an extreme amount of pain. On May 27th, I called my physician and we both agreed to stop taking the medication.

Today is October 2nd, I still have lingering side effects in my hands, my fingers are still stiff when I try to make a fist, and my knees still flair up off and on. This August and September, I went through an arthritic flair up in my right knee, something that I have never experienced before, that left me on crutches for the last month and a half. I feel that this may be related to the Repatha injections, I say this because, in short, my joints have never felt the same since I started Repatha. My hands, wrists and knees have never felt the same since May of 2025.

Recovery is fast in some areas, and longer in others. Below you will find a copy of my Repatha journal that lists my symptoms and subsequent recoveries. I hope that others may find this information useful.

Repatha Side Effects: Tuesday, May 27, 2025 / Last injection – May 19th, 2025
• Dizziness (several times a day)
• Nausea (lite, off and on)
• Heart racing (off and on nearly daily)
• Forgetting stuff, can’t recall stuff. (Pronounced during injection week)
• Arms and legs hurt really bad; I can hardly walk. (Like severe rheumatoid arthritis)
• Muscle ache (constant and severe)
• Urinating a-lot (bladder spasms)
• Increased thirst (Pronounced)
• Muscles Feel very weak (major)
• Muscle Tension (Top of my head to my feet, back muscles feel constantly tense)
• Sore joints (joint pain is severe, constant aching)
• Stiff Joints (very severe)
• Back muscles (constant aching, severe)
• Fatigue (constant and severe)
• Depression (moderate to severe)
• Tendon Issues in Wrists (Dramatically increased after start of medication)
• Notable swelling in my arms and legs

Update, June 2, 2025:
Symptoms slowly lightening up.
• Walking is easier but still painful, especially in the knees, shins, and ankles. All of my joints are still very stiff, I still feel pain in my hands (all joints), wrists, elbows, knees, ankles, neck and shoulders.
• I still feel tension from the top of my head to my feet. It is slowly getting better.
• The memory loss is slowly getting better.
• The depression is slowly getting better.
• Fatigue is still heavy but lightening up a bit.
• Thirst and bladder events have decreased.
• Heart palpitations have decreased as well.
• Dizziness has significantly decreased.
• Back pain, especially lower back pain has significantly decreased.

Update, June 10,2025:
Symptoms continue to slowly lightening up.
• Walking is getting better. The overall pain in my legs have decreased. The joint stiffness in my knees have lightening up considerably. The pain in my ankles and shins have decreased dramatically.
• Overall joint pain and stiffness in my hands, wrists, elbows, knees, ankles, hips, neck have lightened up. The overall pain and stiffness are still present but to a much lesser degree.
• The memory loss is much better. I still have some foggy moments though.
• My depression is better than the last update. It is a slow road to recovery.
• Fatigue is much better. I still have fatigue but it is much reduced and my energy is getting better.
• Thirst, decreased dramatically. Bladder events, still getting spasms but not urinating as frequent as before.
• Heart palpitations have dramatically decreased.
• The vertigo episodes have decreased significantly since the last update.
• Back pain, overall, is almost a non-event now.
• The tension I was feeling from the top of my head to the bottom of my feet has decreased dramatically. I still feel the tension but to a much lesser degree. It has greatly improved.
• Tendon pain in my wrists have decreased dramatically but is still present and troubling.
• Shoulder pain is still present, more prevalent in my left shoulder. The ache is constant in both.

Update, October 2,2025:
Symptoms continue to slowly lightening up.
• Walking – I fully recovered and was walking well. On Aug 7th, my right knee started swelling and increasing in pain. By the 20th, I was on crutches and back into the Dr’s office. I was on crutches from Aug 20th until September 26th. I am now walking with a cane. Recovery is slow but getting better.
• The overall major joint pain and stiffness in my hands, wrists, elbows, knees, ankles, hips, neck have stopped. My hands (fingers) and wrists are still stiff. My knees are stiff occasionally, both were not a problem before Repatha.
• Memory loss has greatly improved and it is getting better every week.
• My depression has greatly improved but I still have a lingering bit. Again, it is a slow road to recovery.
• Fatigue - My energy is much better. Before this last knee incident, I was 100%.
• Thirst, and bladder spasms, have stopped completely.
• Heart palpitations have dramatically decreased, maybe once or twice a month now, down from nearly daily.
• The vertigo episodes have stopped completely.
• Back pain, overall, stopped completely.
• The tension I was feeling from the top of my head to the bottom of my feet had stopped completely. After the knee incident, I do feel stiff but it is a much different, and normal, feeling than when I was on Repatha.
• Tendon pain in my wrists is almost nonexistent now.
• Shoulder pain has stopped completely.

Of all the statins that I have tried, this alternative (Repatha) has had the worst side effects by far. I am now currently seeking the guidance of a rheumatologist to take a serious look at my hands and knees. This leaves me a bit fearful of trying other medications at this time. In the meantime I am working on strict dietary guidelines and working with a physical therapist to help with my knee. A clean diet and remaining active are the new norm. If I slack in either I feel the repercussions.