Vytorin Problems

[julied]

My name is Julie D. Here is my story. I was 45 at the time and had been in great physical condition, active and healthy until now. It was Oct. 2004, I was DX with blockage in my heart. My main artery was 50% blocked. Right now, i am on a series of meds, one of them being vytorin. In Jan. 2005, I got very ill. The sickest i have ever been. My legs were swollen, red and very weak. Could hardly walk. Ruled out Congestive Heart Failure and final DX was severe Influenza. It lasted for weeks. There was a day , where i could not even get out of bed. On a scale of 1-10, the pain was a 10. The pain would float around, i was not mobile at all. Then it happened again in Feb. 2005. My family doctor suspected that maybe we were dealing with Auto Immune Disease and sent me to Rhumy. My C Reactive Protein for Inflamation was 14.9 but my ANA was negaitive. Rhumy ruled ot Lupas . My pain did not go away, it was tolerable as long as i was not mobile, kept me from doing everyday activities. They finally took me off Vytorin and put me on some heavy duty steriods for 4 mos., which was very hard on my body and mind. I did the tapering off thing and i was finally off the steriods. They worked for about a week and then the pain and discomfort was back. Then I started back on Vytorin. THe doctors said that was not making me sick. Then I went to Neuro Musclar doctor in Houston Medical Center. Dr. Hrati.. He has ruled out any type of muscle problem. I have had several EMG's, blood work and Muscle Biopsy ( which were not pleasant at alll). Now we are back to some type of Auto Immune Problem , such as Lupus. Now Dr. Hrati suspects the Vytorin making me ill. My husband and I have asked that question numeros times and always got a no response. Well, I have been off since July. My legs have improved but my hips are so bad. I am still wondering if it is not lupus and the Statin drugs were making it worse. Who Knows, I will see my Cardio tommorow and he will probably be upset with me, cuz he wanted my to get on Pravacol with the Zettia and i just fear the Statin drug now. In the meantime my blockage is also worse they think. They want to schedule another heart cath and then bypass is my only solution. My blockage areas are not stintable. I am also working very hard to get on a healthy diet, loose the extra 20 pounds i gained while on steriods. that could only help. I need to explore more with the Auto Immune thing and get the heart thing fixed too. But I am so sick of doctors and tests and the medical bills. I can only fix one thing at a time. Thanks for your interest, Julie Dismukes -

[Tia]

Hello Julie, my story is similar, 2 years ago it all started at 43 and I was very healthy for my age, although instead of a blockage, I had thyroid cancer (2 different types), and DX with 3 thyroid deseases. I was doing well after the cancer, I was having some side effects from the synthroid (which is a pill to replace my thyroid that I take everyday), and one was muscle pain. I complained about it to my Dr. to no avail. He said it was probably the synthroid since I had to be on a high dose of it to surpress the cancer. So here I was on Vytorin for a year and a half and he never took me off it. Finally I could not walk very far or push my 6 year old on a swing. I was then told probably Lupus, I went to a lupus Dr. who said he didn't think it was lupus and to get off the Vytorin. I found this site and got the L-carnitine and co-Q10 and within a week 80% of my problems were gone, my muscles were just weak so I can't go back to the gym yet. All has been good for the last 3 weeks, till this week, the pain is coming back and I am not sure way? I too, am sick of Dr's, tests and bills, I want my life back!! I am thinking of you and wishing you a great recovery, try your best not to go back to Statins, I truly believe they did this too us!!

[Darrell]

Tia, re "the pain is coming back", did you change your L-Carnitine source earlier this week? There may be variations in the non-prescription sources.

[Tia]

yes I did. This is probably more personal then I should get, but my period started last weekend (first since off of Vytorin), it was the worst I have had in my 45 years for two days straight, this is when I started feeling that the pain was coming back in my legs. Then after two days it stopped (the period, which should last a week)! I was wondering if the q10 had anything to do with it with such a heavy flow. So two days before I started a new brands carnitine and Q10 I started to hurt.....not sure if one effects the other. Has this happened to you when you switched the brands (of course minus the period)?

[Darrell]

Ray Holder is very particular about his L-carnitine supply, but I've tried several brands and forms and combinations and they all work for me.

Tia, my wife is 49 and has had similar experiences to yours in recent years without ever taking statins or Q10 or L-carnitine. It's just the nature of menopause. On her doctor's advice she has been taking black cohosh and soy isoflavones for relief, but it's not clear that they really provide any relief. Lately, the hot flashes are the worst. The good news is that menopause is well known condition and that usually ends with a positive outcome. Hang in there.

[Tia]

Thank you for the reply. Menopose is not here yet for me, but I am sure I am getting closer to that day. It was just odd. I will try the same brand again, it just has me bummed since everyday for 3 weeks I was just getting better now I am sliding back. I have a new dr. now and when I asked if he had seen others with Vytorin problems, he said not two hours before my appointment he saw a lady that was only on it for two weeks and she could not walk! I have been taking 900 mgs of q10 in the morning and 500 carnitine morning, after lunch and then dinner, is that too much, or should I take 250 at shorter periods? I am also taking b-6,b-12, omega 3 times throughout. Thank you for all your help gentlemen!

[Darrell]

I usually take 500 mg of L-Carnitine at about 7:30 am with light breakfast, 11:30 am (perhaps an hour before lunch), 3 pm, and 7 pm (right after dinner). I take it sooner in anticipation of major exercise; sometimes that results in my taking it five times a day instead of four. I believe Ray just takes one huge dose in the morning, but he's 85 and a bit more sedentary. I prefer to spread my daily dose out as, now that I can be, I'm fairly active all day long.

I don't think 250 mg, eight times a day would be preferable. I'd have trouble sticking to that schedule without having my watch or cell phone beep at me every two hours as a reminder.

[Ray Holder]

I still believe that one needs a good dose of carnitine first thing in the morning before any food at all. I take mine before I dress, half an hour before breakfast. The West Australia Polio Network have hundreds of members on carnitine, and have found that to be the best arrangement, with extra during the day to meet special needs.(www.upnaway.com.au/poliowa.)
As I said in another posting, one source said that there should be 2 1/2 hours since last eating and 45 minutes to the next food, and that's a bit difficult to manage several times a day.
Another expert warned that it was easy to take too much Q10 or carnitine, neither of them very cheap, and only "produce expensive urine"
It is difficult to know what is an excessive dose, it won't harm you, you get a bit apprehensive about going below what your body really needs, but yet you want to derive the maximum benefit. There is no simple test to find the body levels of either, although a CK test is not a bad indicator if carnitine level is too low.

[SusieQ]

Tia, speaking as a 65-year old female, you should read up on peri-menopause. Randomly heavy periods are a common symptom--they are due to an imbalance in estrogen and progesterone and are not at all uncommon by age 45. Looking back, I'm glad I didn't have to deal with these horrible Lipitor side-effects at the same time as I was dealing with peri-menopause which I now think lasted some 10 years in my case. You have my sympathy and best wishes.

[Pammy]

Would like to know what is Q 10. And what does it do?

[Ray Holder]

Pammy

If you put Introduction to Coenzyme Q10 + Peter Langsjoen into Google you will get a 16 page paper on the subject, however you may like something more simple, if I can manage it.

Coenzyme Q10 is a vitamin-like substance which forms a part of every cell in the body. It is very thinly spread, as the body total is only about 2 grams, and it is renewed over a 4 day period, so a continuous supply is required. It is also called Ubiquinone, as it ubiquitous in every cell in the body. It is a most important item, as its prime function is to facilitate the cell to get access to the energy it needs to carry out its particular job, and is found in large quantity in heart, liver, kidneys etc., which have high energy needs, but also in muscles and in fact, just everywhere.

Ray

It also has a very important part to play in handling oxygen and helps prevent damage by oxidisation, It helps to ensure membrane health, and that doesn't mean just keeping what you might imagine to be just a thin sheet material healthy, the diagrams of body membranes, or selective filters, in the text book are some very complicated microscopic structures
and they are a most important part of the body's working at molecular level.

Q10 is at its maximum level at age 20, and gradually decreases throughout life to be at 50% by age 80, and is probably one of the main reasons for ageing. Now statins reduce the production of Q10, possibly in the same proportion as cholesterol is reduced. With age, it drops on average, by 8% every decade, so roughly speaking, a cholesterol lowering by 20% would be accompanied by 25 years worth of Q10 loss by ageing, i.e., your body is 25 years older than your age, it doesn't bear thinking about!!!

Damage caused by Q10 reduction may appear almost anywhere, heart, liver function, kidneys, muscles, nerves, the list is almost endless. The muscle and heart problems are compounded by the consequent reduction in supply of carnitine, which is needed for energy production from fats.

Not a pretty picture, but prompt cessation of the statin and supplementation with Q10 may avoid worse problems.

[Ray Holder]

Sorry, but I added my name after previewing, and I hadn't scrolled down to the bottom, I never had this trouble with my fountain pen!!!