Anyone stopped taking Repatha after trying?

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 @brad331, and welcome to Mayo Clinic Connect! I am glad you found this discussion to share your Repatha experience with. I am hopeful you will find encouragement here.

Repatha did not work for me and I currently take inclisiran. I was initially told it worked the same way as Repatha but my experience is totally different, so I know it doesn’t. I ended up in a circulation crisis a few years ago and my doctors are working with me, addressing symptoms one at a time. I had other health issues prior to taking Repatha, more following, so I’m not quite sure I can directly speak to side effects of the drug. Some of what you describe does seems familiar to me.

I want to invite @rhondaj to meet you because she has described some similar problems. Also, you may want to check out another discussion if you have not already:
- Repatha, side effects, and what comes next?: https://connect.mayoclinic.org/discussion/repatha-and-side-effects/

I am learning to function better by staying highly active, resistance training and maintaining a strict diet. For whatever reason I need to be extremely consistent with all of it. I am interested to hear as you learn, so please do post more.

You mention your lifestyle has been wrecked. What things are you not able to do now? What is your next step?

Hi brad331,
I had all of your symptoms that you mentioned as well. My rheumatologist said that it could take years to recover from the damage that Repatha did to my body. She said that she sees many patients with these same symptoms that have used any of the injectable cholesterol meds. Be sure to read my posts in the link that Janelle sent you. It will be interesting to compare notes.
It is significant that Janelle mentions that she has to stay on a very strict diet, maintain her resistance training and remain very active. I find that I regress if I fail to remain steadfast in these areas as well.
Because I was only using Repatha, was very active before this drug and had no problems before taking the drug it was easier for me to connect the dots on the cause. Unfortunately, I suffered the last two years while taking Repatha (I was on it for 4 years)because it took some time for me to realize that it was the drug doing it to me. I thought I was aging fast. I have been off the drug for 11 months now, and have had significant improvement, but the Rheumatoid arthritis symptoms, edema in my stomach, groin area and legs have remained. Staying on a Mediterranean diet and eliminating all of the nightshade plants does make a significant difference for me. Doing pool exercises helps with the edema. That type of resistance helps the lymph flow better. I have to remain active daily or I see regression in my progress. If you see a Rheumatologist be sure to bring up the Repatha use and your symptoms. My rheumatologist administered one drug for a week. Because my body did not respond to it, and my numbers changed drastically with my diet and supplements prior to the use of any drugs, she was able to confirm that Repatha was the cause and that I actually did not have Rheumatoid Arthritis even though all of my symptoms pointed in that direction. My Rheumatoid markers went from high to nonexistent by adjusting my diet. She said the markers would not change that drastically if it was Rheumatoid Arthritis. Good luck to you!

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.

I tried taking Repatha for the second time for 2 months and the fatigue and nights sweats were just too much. I also have prediabetes and now my blood sugar is extremely high. Has anyone else had this problem with Repatha and blood sugar levels?

I’m sharing my story to help others who may be starting or considering Repatha.

I’m a 40-year-old man, very active, with healthy eating habits and no underlying health issues other than familial high cholesterol. My doctor prescribed Repatha to lower my LDL levels.

After my first injection, I experienced mild fatigue but nothing alarming. Two weeks later, I took my second dose. Within a day, I developed flu-like symptoms: body aches, headaches, night sweats, and a low-grade fever. These symptoms lingered for several days despite rest and hydration.

By Thursday, I still felt unwell, and that night I coughed up bright red blood with clots and went to the emergency room.
At the hospital, doctors performed extensive testing bloodwork, viral panels, X Rays and a CT scan of my chest all came back normal. They could not identify any infection or clot, and the imaging looked clear. Given the color and appearance of the blood, the medical team could only infer that my bronchial passages were inflamed, possibly from a viral infection that standard tests didn’t detect and was causing the bleeding, as it wasn’t coming from the stomach, I had no abdominal pain.

I’m still following up with specialists to better understand what happened.

I share this experience not to alarm anyone, but to encourage awareness and careful monitoring

Hi, @olmoschris. Welcome to Mayo Clinic Connect. You’ve had a difficult time, I am so sorry.

Thank you for sharing your experience with Repatha.

How long has it been since your final injection? You mention following up with specialists. What specialists are helping you, and what is next?