Late to the party...?

[BBHerk]

I am a 53 year old woman from a small rural county in East Texas. I wish I'd known about this site sooner. My doctor started me on Vytorin about three years ago because my LDL was 261. My HDL was high also, so my ratio was good but she didn't care. Said I HAD to get my LDL below 200. She never mentioned supplementing with CoQ10 nor mentioned anything about possible side effects even though it appears that there was plenty of evidence out there indicating she ought to. I'm rather annoyed about that.

When I started having side effects, and asked her if the drug could be causing them, I got the standard answer it seems others on this site received from their "medical professionals."

After experiencing joint pain, muscle aches, and that lovely clay-colored stool (ugh!), I went to my doctor, told her that I read the literature accompanying the Vytorin prescription and it said to inform my physician of any of these "serious" side effects. She totally blew me off. Said that if one of the participants during the pharmaceutical company's study of a new drug had a car accident and broke a leg, that the company would have to list "broken leg" as a side effect of that drug. Said that my problems were probably caused by something else and to keep taking the Vytorin. She didn't say what that something else might be though. I was going through menopause at the time, so I assumed that my symptoms were associated with that and not the drug. I mean, why would my doctor want me on something that was hurting me?

Within six months, I packed on sixteen pounds. Mostly around my middle. My joint pain worsened. Every joint in my body started popping and creaking. I experienced a torn rotator cuff, tennis elbow, jumper's knee in both knees and extreme pain in my achilles' tendons every morning--so bad that I could barely walk to the bathroom when I got out of bed. My lower legs, ankles and feet stayed swollen all of the time. I had to quit working out and doing yoga because of the pain. Though I didn't at the time, I now recognize, that I was also experiencing some cognitive problems. I'm a writer and I gradually quit writing because I just couldn't seem to find the words anymore. I figured it was writer's block. But then, I didn't seem to be able to get much of anything done. Even paying bills and filing paperwork were almost insurmountable tasks. I couldn't knit anymore because of the pain in my elbows. I couldn't continue painting my mural because it required kneeling and standing and caused pain in my hips and knees. Gardening became an agony. My hair started to thin alarmingly. My skin began to dry out, get thin and papery. I went through periods of being angry and hostile, which I thought were justifiable. Still, I took the Vytorin...my LDL was down to 196. Yay.

Then, my doctor decided my triglycerides weren't low enough and added Niaspan to my drug regimen. Well, things went from bad to worse. The doctor told me to quit the Vytorin, but stay on the Niaspan. Well, my LDL popped up to 300 and my triglycerides to 600. She said to me, "What are you doing?" Somehow, it was all my fault. Something I was doing. She took me off of the Niaspan and put me back on the Vytorin. Numbers went down again. Yay.

The joint pain...what I think I'm actually suffering from is generalized tendinosis, the degradation of all tendons in my body, caused by the inhibition of collagen production or synthesis (I'm not sure of the exact mechanism) by the statin drug. The joint pain worsened. My tendons felt like rubber bands, barely capable of holding the muscles to the bones. My joints were all loose-y goose-y, at least the ones that didn't feel like they were being stretched to the point of tearing.

Finally, my doctor told me to stop taking the Vytorin. She said we'll see what happens over the next couple of months. Well, from reading this forum and doing some other research on the web, I know that it'll take more than a couple of months for me to see any recovery. I'll not get back on any statin, ever.

I have been off of the Vytorin for over a month. I haven't seen much improvement in my joints, but the swelling in my lower legs and feet is gone. I've started taking CoQ10 and L-Carnitine along with about 4500 mg of Vitamin C every day. I am looking at adding some amino acids---lysine, proline, glycine and arginine--to my regimen. I am also considering glyconutrients. I hope to get input from others on this forum who have experienced tendinosis as a side effect as to what works and what doesn't.

My heart goes out to each of you. Especially those who have experienced symptoms far worse than mine. May good health return to you all.

[Nancy W]

Dear BBHerk,

Welcome. Sorry to know you have joined the ranks of statin-damaged people in this pharma-crazed world...but glad you found Spacedoc and all of us. Your letter could have been written by me, especially your symptoms and maladies... First and foremost, you are not crazy! But your doc is, even if she doesn't know it. And you are right, recovery will take time and, sadly may not ever bring you back to your pre-statin self. But you will be much wiser.

You can probably surf around and find my story, but here is the short version. Bad reaction 12 years ago to one month of Lipitor. Muscle pain, elevated CK, etc. Took 12 weeks to go away. Swore off statins...or so I thought. Two years ago, I saw a cardiologist for what turned out to be an MSG reaction, but he, in the process, begged me to try Red Yeast Rice, which he promised was a "very low dose statin." Big mistake! One month later, I woke up one night with screaming neuropathy down both legs, which, within a month generalized to every nerve in my body. Then came devastating fatigue. When all this happened, I was 60 and in the best shape of my life. I was lucky, because of my earlier experience and immediately stopped the RYR, and started surfing, finding this site fairly soon afterwards. The road to today, exactly two years after I started the RYR, has been one of changing docs from one who would only sing the praises of statins, to one who was willing to listen to me and to work with my newly acquired naturopath. The naturopath got me on supplements much like what you can read about here. The severity of my symptoms abated over the next six months, but has never left entirely. I have returned to exercise (water aerobics), but have to be careful not to overdo. I am a physical therapist and have decided to go from doing rehab (heavy work) to doing a private practice in manual therapy (light work). Too risky to be lifting people...especially when Americans are getting fatter and fatter. Since beginning with the Naturopath, and getting on supplements and getting smart about what I am eating...i.e. no processed food, no chemicals. Just real food, most of it organic...I have essentially not been sick with a cold or flu for two years. I went to Africa, and while the rest of my family got sick with mosquito bites and malaria (even though they were all on anti-malarials, while they all go intestinal this and that...I was totally healthy! Not great energy, and the usual aches and pains. My only crisis was when I extended my stay there, I ran out of my supplement, Neurochondria (Thorne), and had to get someone to bring more from the States. Within 36 hours off of it, the neuropathy worsens and within 96 hours, it is back all the way, full force in all my extremities. Takes a few days to abate when I get back on the supplements.

All this to say that your issues are real! I highly recommend the books the docs on Spacedoc have written. Dr. Graveline's books on statin damage are great places to start, and I recommend his newest book on mitochondiral damage. The new information in the currnet newsletter on statins and diabetes is pertinent. I am beginning to wonder about myself. I have never had diabetes, but the fact of the persistent neuropathy in my toes has me worried. I will be going to my naturopath in the next two weeks to sort that out.

It takes time, but surf through all the posts and you will find out how people have coped, and what supplements have helped. I think it is safe to say that each of us are different and there is no one regimen that fits all. Graveline talks about supplement in his e-book on mitiochondria and there are many posts about supplementation here.

What I and others have done, is to do enough research to understand the Mevalonate Pathway and how and why lowering cholesterol is devastating to many systems. If you can, get and read Dr. Beatrice Golumb's work on the adverse effects of statins. It is a huge article and one you can refer doubting docs to. Now, when I see a cardiologist, which I did several months ago, I blow them away with my knowledge, which surpasses theirs in this arena. Oh, and when I did have a stress test recently, due to some unexplained chest pain that was not a heart attack, I came out 50% ahead of all 60 year old women who are stress tested. I would not even let them test my cholesterol, nor would I let them even talk about statins or Niacin. I would have no part of it. The ARNP was insulted, but the cardiologist was amazed and supportive. The tide is slowly turning.

Just know that you are not alone! Nancy

[Nancy W]

BBHerk, by the way, I know your posted your note much earlier this year. I hope you get back on and find my response. If you want to discuss more, feel free to find me on the Memberlist and e-mail me. I have been gone from the list for much of this year due to my father's terminal illness, then to being gone in Africa with my children while they were adopting a little girl from Uganda. Nancy

[uncle2blade]

BBHerk, Please go to My statin stories and My statin story updates if you haven't. Best to you, and feel free to ask questions if you continue to have some. Craig

[lars999]

BBHerk,

My statin was Lipitor and many of my adverse side effects were/are much like yours. Fortunately, I was far away from my prescribing doctor when I found this website and started educating myself about what Lipitor can do and did do to me. I quit Lipitor within a week. By time I returned home, a few months later, I was well on way to recovery, having stopped Lipitor. 10 june 2011 was one year after quitting and I am extensively recovered, but not fully. I am currently 71 and finally back to cross country and downhill skiing, as well as hiking in mountains -- something I had been unable to do much or any of in recent years.

I fired my doctor, conned my cardiologist into ordering tests that demonstrated that many of my problems were NOT caused by cholesterol, just "ordinary" statin adverse side effects. Now, ANY doctor that starts talking about wonders of statins and how bad high cholesterol is, gets put on my BEWARE!! list instantly, likely to never see me again.

Best wishes that you will turn your life around too,
Lars

[Nancy W]

Hey Lars,

Glad to hear that you are doing so much better. I am coming up to my two year anniversary of quitting RYR after a month of taking it. I am happy to say that in most respects I am much more functional. I was up hiking in the mountains last weekend on the same trail I was on the day the neuropathy started. I can honestly say I felt much better this time than that time! I am back to swimming 5 days a week, though I cannot maintain the aerobic pace I was doing two years ago before...I can mow our big yard without wondcering if I am going to drop dead while doing it.

That being said, I still need a steady dose of CoQ10, ALC and Vit B's (Thorne/Neurochondria) to keep the neuropathic pain in my toes at bay. If I skip the Neurochondria for 96 hours, most of the pain returns to my limbs and face. Interesting, huh?

Last week, I traded some craniosacral therapy, which I do and teach, for some reflexology. The reflexologist told me I had "absolutely no chi" in my lower legs and worked on me twice, for an hour. When she got done, I everything felt absolutely normal! But the effect, as yet, lasts only for a day or two. I will keep trading with her and see if I can get the chi to stay in my lower legs...she also told me I had "no circulation," which I know is true as my feet have been so cold much of the time...but not after her work!

So what does all this mean? Well, I can say I honestly don't know. As a practitioner of alternative medicine (craniosacral therapy), I often get wonderful results, but have no Western medicine explanation. I cannot predict what will happen, except to trust, through experience, that the effect is usually good. The reflexologist, for example, has had huge oral problems with teeth and gums, and probable mercury toxicity. After working on her, she began to detox at an amazing rate, spitting out very foul, bitter somethingorother for the next several days. She went to see her dentist, who is one who helps people get over mercury toxicity, and he was amazed and pleased at the result of the craniosacral work, telling her it had really accelerated her healing. But all this is anecdotal, not in any way the kind of research that western medicine demands...still the reflexologist is thrilled, and feeling much better now...

And I am pleased to know that it is possible for my feet to feel "normal," even though the effect is not yet lingering...it gives me hope.

And, what of BBHerk? I hope she comes back and finds that we found her note and (belatedly) have answered and would love to support her...