Restless Legs Syndrome (RLS) Discussion Board

I've been taking 0.125 mg pramipexole since 2011 I take it as needed when I have restless legs. Thankfully this has worked successfully for about 8 years. Mostly symptoms are mild, occasionally moderate and infrequently severe. I also find that moderate regular exercise helps.

I have a medication question . Are there any reports that statins adversely affect RLS? I am on my third statin trial. The first two caused muscle weakness and muscle pain. I did not notice increased RLS.

A quote from https://www.nextavenue.org/case-against-statins/

"Doctors often fail to recognize the side effects of statin drugs and prescribe additional drugs to treat those problems, which could be resolved more simply by withdrawing the statins. When I see a patient who has been prescribed ropinirole (Requip) or another drug to treat restless legs syndrome (RLS), for example, I’ve learned to immediately check to see if there’s a statin on board. Nearly always there is." The rest of the page is worth the read.

I took Lipitor briefly about 10 years ago. Didn't make RLS worse, but caused MARKED increase in night leg cramps. Extremely painful. Stopped the drug after a few days.

My sister in law was prescribed Lipitor and had no difficulties. Then she started to receive the generic and had problems with her legs. When she went back to Lipitor leg problems went away. However, somewhere along the line she started to receive the generic again and when the leg problems started again she stopped taking the generic. In fact, she no longer takes a Statin at all.

I was given a statin, and it was odd. It made the RLS worse, but it also felt different--more pain than just restless symptoms. But if kept to an RLS schedule, so for a long time I thought it was okay. But the pain kept getting worse, so I finally stopped taking it, and the pain part of the RLS stopped.

According to the UK NHS these are the common side effects from Statins.

Headache
Feeling sick
Digestive issues, such as constipation, diarrhea, indigestion, or flatulence
Muscle and joint pain
Increased blood sugar levels
Increased risk of diabetes
Muscle tenderness or weakness

The one I hear most folk talking about, in general conversation, would be the muscle and joint pain.

I have had high cholesterol for many years, and have never tolerated any statins. The only one I come close to tolerating is a very low dose of Lipitor. After I had a small stroke, my doctor got very busy trying to find some way we could get my cholesterol down.

And he did! It's a medicine called Repatha. It's a shot that goes under your skin that you take once every two weeks. You only get a very little pain when you give yourself the shot.

Here's the problem with it: cost. The first time I got the prescription filled--for one month--my copay was a hundred dollars. But it turns out that I can get it through Express Scripts. A three month supply is only 36 dollars through them It's a mail insurance, and I think you may need to have medical insurance to use it. Not sure. Or there may be another way. But it's working great for me, no side effects that I can tell, and my cholesterol is done for the first time in 30 years.

Oops. I made a mistake. I think you may need military insurance. My husband is a retired Navy officer, and Express Scripts is through them. But if they can provide it so cheaply, maybe another insurance can as well. I think it would be worth trying.

You do not need to have military benefits to use Express Scripts. They are the pharmacy benefits manager that my former employer forces me to use. They are a subsidiary of Cigna Insurance. However, it is also possible that their price would vary depending upon how you access them.

Repatha - I looked it up (I was advised to take a statin but so far have refused - we'll see what my next LDL test says) and was intrigued to see that it's a monoclonal antibody (a protein made in the lab by cloning a single cell (hence "monoclonal"); the protein acts like an antibody inside you). In case anyone is interested:

The liver both produces and destroys cholesterol. Repatha helps the liver destroy LDL cholesterol. Repatha blocks a protein we all have called PCSK9. How it works: In a normal body, LDL receptors on liver cells grab LDL cholesterol from the bloodstream and bring it into the cells, where it is broken down. So we want more LDL receptors (if our LDL count in the blood is high). PCSK9 *reduces* the number of LDL receptors in the liver; that's the opposite of what we want. Repatha blocks PCSK9, which leads to *more* LDL receptors, which is what we want. Repatha helps the liver remove LDL from the bloodstream.

Statins work differently. They block an enzyme (HMG-CoA reductase) that is critical to producing cholesterol in the liver. Since the liver produces most of the cholesterol in our bodies (our diet provides only about 30%), statins can be very effective in lowering LDL by preventing its production in the liver.