I am new to this forum. It has been very enlightening reading all of your posts! about 10 years ago, I was on Lipitor for 4-6 weeks when I developed flank and hip pain. I was suspicious and asked my doc to order a CK level to be drawn, which she did. It was high and I stopped the Lipitor.
A decade goes by. My lipid tests routinely excite my doctor, who has me try Niacin. I don't tolerate Niacin, especially since I have rosacea. In January of this year, I was having sudden bursts of tachycardia and elevated BP. I ended up at the cardiologist. They ran the more involved lipid tests, NMR, which give "platelet" levels. From what I am beginning to learn, the usual lipid levels were abnormal by AMA standards, but the LDL-P levels really got their attention, as I was way off the charts high. they told me this profile showed that my dyslipidemia was familial/genetic. They knew I had been intolerant of Lipitor. I also have an excellent naturopath. The cardiologist recommended dietary and lifestyle changes (exercise), and suggested I try Red Yeast Rice as an alternative. He was open to consulting with my naturopath.
The naturopath saw me, looked at the lipid testing, and said my cholesterol levels were normal for my age and sex. He was skeptical about the RYR, but said to give it a try, making sure to take CoQ10, Vit D, Fish Oil and Vit E. So I took RYR for about 6 weeks.
I did, at this point make big changes in my diet and exercise and for the last five months, I have done deep water aerobics, an hour per day, five days per week, with walking or hiking on the weekends. We have been eating only humanely raised, grass-fed meats, and we bought a crop share at a local organic farm, so we have been eating a wonderful abundance of organic vegetables since the spring.
I concluded that the arrythmia and blood pressure spikes were more likely related to MSG in restaurant foods, as I only had five episodes and each was after a restaurant meals. We cut all processed food from our diet. I have had no more arrythmias, and my BP is normal.
While on vacation in early May, I experienced some back and hip pain so I stopped the RYR. The pain was short lived. I did not have CK testing done since the pain lasted only a day. Back at home, I went another couple of months with no symptoms, and then decided to go back on the RYR. This time I was on it for about 6 weeks when I had a sudden onset of severe neuropathic leg pain (in early August). I again stopped the RYR, and this time saw my doc, who initiated some consults to figure out the leg pain. NO CK testing done. Testing by both cardiology and vascular medicine have been done. The cardiologist was delighted with the downward trend, but the numbers, especially the NMR Platelet numbers were still higher than they wanted. He dismissed the RYR as the culprit, but I told him I wasn't going back on it. So he told me that once the other specialists ruled out statins as the cause, I should go on Crestor!!!! And he gave me samples. Yikes!!
The vascular evaluation turned up nothing. My arteries and veins are in good shape, save two small varicose veins in my calves, which shouldn't be causing all this pain. The vascular surgeon unequivocally said do not take RYR as it is a statin. funny, the cardiologist didn't have the same passion about statins.
So, in the last month, the pain seemed to be abating, which made me all the more suspicious of the RYR. About a week ago, I was working out in the gym (a new activity I had added to the aerobics) for only the second time. I experienced extreme fatigue with the exercises. Unlike even the week before. And then one night this week I had a return of extreme neuropathic pain in my feet and legs. And some neuropathic hand pain, as well. Some nausea.
I am a physical therapist with 40 years of experience, and know that this is not a typical pain presentation. I knew the generalized and random nature of it would more likely be either chemically induced, or perhaps related to something like MS, though I doubt that diagnosis.
I started doing more research online. This is when I found this site. I read about the demyelinating effect of statins. This all fits.
So my question is, since I don't see a topic on the basic list called Red Yeast Rice, are there others of you who have had this experience with RYR? Yesterday one of the women I swim with was listening to me talk about this, and exclaimed that she had switched form simvastatin to RYR thinking it was better for her and now has nighttime cramping in her hands, and a tennis elbow like syndrome going on in her arms. I have referred her to this site, too.
I am glad to have found this site and look forward to continued reading. I will see my naturopath this week and get his slant.
One other question: does anyone her have experience with the NMR/Platelet testing as part of the lipid studies? From what I can find out, although the doctors are being given a "range " of what is "normal", they have no idea what to do with the results.
It is clear to me that my cardiologist knows very little about the benefits of cholesterol, and has bought the "party line" hook, line and sinker!