Statin discontinued due to neuropathy. What are some alternatives?

Posted by Nazir Khan @nukhan, Jan 19, 2020

I have been using Lipitor since 2007 for lowering my cholesterol which is on the list of those medicines that are suspected to cause neuropathy. I am thinking of discontinuing this menace but before doing so want to check with those members who have discontinued using statin and what is their experience. What alternative methods have they since adopted for lowering their cholesterol .. diet, alternative medication, exercise or anything else ?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for swilkins1974 @swilkins1974

Some people take every other day

Jump to this post

My total cholesterol dropped to 178 while taking the tiny 5mg tablets of Rosuvastatin (Crestor). Good enough for me to consider every other day! I sure hope the small amount I'm taking is not exacerbating the peripheral neuropathy!

REPLY
Profile picture for MamaMarch @mamamarch

After years of being told to take them, I finally gave in when my Total Cholesterol levels reached 330. This is clearly a familial problem as I have a very heathly lifestyle but a family history of cardiovascular issues.
They said they'd start me on a low dose; Rosuvastatin (Crestor) 20 mg! After only a few days, I called and said I'm cutting them in half! Was still able to get my levels down to 170 in no time, but still having leg pain.
Just curious to see if those levels would hold on their own, so I stopped the statin completely for several months. Levels went back up! I agreed to go back on at 5mg! Leg pain is greatly reduced, but not gone. I have blood work tomorrow to see what my levels are. If they are reasonable (not necessarily low!) I think I can live with this dosage.
If my levels drop down to 170 again, I swear, I'm going to cut these tiny little 5 mg. tablets in half, LOL!

Jump to this post

My numbers were not better on any statins as when I was taking Crestor 5mg twice weekly. More didn’t necessarily mean lower LDL. My understanding is they all stay in your body a different amount of time and that twice a weeks is sorta that balance where there’s some in your body all the time, and all statins are different in this regard. Curious, where is your leg pain?

REPLY

There are a few good alternatives to statins, REPATHA, ZETIA, BEMPEDOIC ACID,LOVAZA. LEQVIO. Talk to your cardiologist to find the right medication for you. It took a couple of tries to find the right one to lower my LDL-C and Tricycycerides.
Be patient, be sure to get enough protein for blood draws and good luck.

REPLY

I have been on Repatha for a couple of years and it has done a great job of lowering my cholesterol. Almost cut it in half. I was on the Pushtronic sub cutaneous infuser and having trouble getting it, then found out it was discontinued by Amgen. I switched to the Sure Click auto injector and don’t like it. It really hurts because it injects a ml of fluid too fast. So I will try the prefilled syringes that I can inject slowly under my control. The Healthwell Foundation will help with Repatha copays, but the high cholesterol fund is currently closed. It may reopen and is worth checking periodically since the copay is about 400.00.

REPLY
Profile picture for MamaMarch @mamamarch

After years of being told to take them, I finally gave in when my Total Cholesterol levels reached 330. This is clearly a familial problem as I have a very heathly lifestyle but a family history of cardiovascular issues.
They said they'd start me on a low dose; Rosuvastatin (Crestor) 20 mg! After only a few days, I called and said I'm cutting them in half! Was still able to get my levels down to 170 in no time, but still having leg pain.
Just curious to see if those levels would hold on their own, so I stopped the statin completely for several months. Levels went back up! I agreed to go back on at 5mg! Leg pain is greatly reduced, but not gone. I have blood work tomorrow to see what my levels are. If they are reasonable (not necessarily low!) I think I can live with this dosage.
If my levels drop down to 170 again, I swear, I'm going to cut these tiny little 5 mg. tablets in half, LOL!

Jump to this post

I refused to take Statins and Had stroke in my eye.
Now must take 20mg and baby aspirin.

REPLY
Profile picture for ebero @ebero

I am managing high cholesterol with diet. I was never able to tolerate statins, and I have PN. I avoid red meat, dairy and sugar. Plus I use olive oil in my cooking and salads. Good luck to you!

Jump to this post

I wish! I eat no meat (just fish), no dairy and practically the only sugar
I get is in a bit of dark chocolate after dinner. For years I have only
used olive oil (very little, at that) and I take an Omega 3 supplement. I
have aerobics, strength training and stretching classes three times a week.
I am 5' 4" and weigh 128 lbs. Still, my cholesterol was at 336!
I always avoided statins because my Cardiac Calcium Score came back
as Zero! No blockage of any arteries. But, last year my CAC (Coronary
Artery Calcium) score crept up to 20% and while that is not bad, I'm not
comfortable with the somewhat sudden increase. So, here I am,
experimenting with the lowest dose of statin that might keep the
cholesterol levels in check, but not exacerbate the peripheral neuropathy.
While diet and lifestyle are the answer for some, it is not
necessarily going to work for everyone.

REPLY

I am managing high cholesterol with diet. I was never able to tolerate statins, and I have PN. I avoid red meat, dairy and sugar. Plus I use olive oil in my cooking and salads. Good luck to you!

REPLY

I cannot take statins or Zetia, so I am taking Nexletol with Repatha. I had some side effects from Repatha, but they went away after a month. You need to take a statin with Repatha to work well, so my cardiologist added Nexletol. It works different from statins - a different process. I have not had any side effects from Nexletol, and I have been on both meds for over 3 years.

Just a warning, my insurance doesn’t like paying for both meds. But my lipidologist put extra effort in and got it approved. There are no generics for Repatha or Nexletol, so they are expensive. Repatha is doing most of the work because Nexletol doesn’t lower cholesterol as much as statins, but every little bit helps.

All the best to you. 😊

REPLY
Profile picture for MamaMarch @mamamarch

After years of being told to take them, I finally gave in when my Total Cholesterol levels reached 330. This is clearly a familial problem as I have a very heathly lifestyle but a family history of cardiovascular issues.
They said they'd start me on a low dose; Rosuvastatin (Crestor) 20 mg! After only a few days, I called and said I'm cutting them in half! Was still able to get my levels down to 170 in no time, but still having leg pain.
Just curious to see if those levels would hold on their own, so I stopped the statin completely for several months. Levels went back up! I agreed to go back on at 5mg! Leg pain is greatly reduced, but not gone. I have blood work tomorrow to see what my levels are. If they are reasonable (not necessarily low!) I think I can live with this dosage.
If my levels drop down to 170 again, I swear, I'm going to cut these tiny little 5 mg. tablets in half, LOL!

Jump to this post

Some people take every other day

REPLY
Profile picture for charliesophiedaisyro @charliesophiedaisyro

Please let me know how this works. I know my GP will push statins on me next time I see him. I swear I will not go back to Statins because of the horrible leg cramps.

Jump to this post

After years of being told to take them, I finally gave in when my Total Cholesterol levels reached 330. This is clearly a familial problem as I have a very heathly lifestyle but a family history of cardiovascular issues.
They said they'd start me on a low dose; Rosuvastatin (Crestor) 20 mg! After only a few days, I called and said I'm cutting them in half! Was still able to get my levels down to 170 in no time, but still having leg pain.
Just curious to see if those levels would hold on their own, so I stopped the statin completely for several months. Levels went back up! I agreed to go back on at 5mg! Leg pain is greatly reduced, but not gone. I have blood work tomorrow to see what my levels are. If they are reasonable (not necessarily low!) I think I can live with this dosage.
If my levels drop down to 170 again, I swear, I'm going to cut these tiny little 5 mg. tablets in half, LOL!

REPLY
Please sign in or register to post a reply.