Zocor and Zetia My Unfolding Story

[garlicprincess]

New to forum, glad I found spacedoc.net while searching for information to fill in missing pieces of my puzzle. Will try to be brief

Age 51 - on Zocor for 10 years after trying to reduce cholesterol by weight management and strict diet. It wouldn't budge. 230 total cholesterol at that time

Starting Dose: 20 mg

Diagnosed with autoimmune Hashimoto thyroid disease the following year which most likely the high cholesterol was a flag that something else was brewing

Dose increased to 40 mg - total cholesterol still holding at 200

Muscle pain, joint pain from onset of starting treatment - was told pain was diffuse inflammatory osteoarthritis, multiple sites.

Extreme fatigue and "wiped out feeling" with bouts of dizziness, easy to fall asleep when sitting down to read or catch news

Zetia added about 1-1/2 years ago. Total cholesterol dropped to 159, HDL 44, LDL 92, Tri 117. Yes, the Zetia worked, but not worth feeling like you are slowly dying!!!!!!!!!

PTH 92, Vitamin D Deficiency, Osteoporosis now appears diagnosed 12/2005

Bone, muscle, joint pain running 7-8 - chronic pain and stiffness

Depression

Difficulty sleeping at night

Vision issues intermittently

Major weakness and exhaustion, feel like leg muscles are wasting away - a major chore to walk the dogs and do ADL's

Absorption issues suspected, tested negative for Celiac Sprue and
referred to gastro for biopsy of small and large intestine

Creatinine clearance test upcoming along with CBC, Creatinine Blood, BUN tests

Stopped Zocor and Zetia two days ago and starting on regimen of COQ10, Fish Oil, Baby Aspirin and B Vitamins

Feel absolutely miserable and weak and very concerned that the statin and zetia are culprits for some of my symptoms. I had never felt so horrible until I started the Zocor and feel like I have lost 10 years of my life to aches, pains, depression and now some kind of absorption issue which has caused a FAST weight loss. I just want to crawl into a corner and sleep. Praying the supplement regimen will kick in and help me through this.

Best to all,
Sarah

[sos_group_owner]

Hello Sarah and Welcome to the forum,

Re: CoQ10 - start with at least 100 to 150mg and increase as needed.
Since statins side effects are due to CoQ10 deficiency, the dose to
reverse damage is very individual. Take gelcaps with liguid CoQ10
(not powdered) and some vitamin E. Some CoQ10 capsules already
contain vit. E.

The only side effect is CoQ10 can lower BP, so if you take BP meds
you'll need to monitor your BP as you increase the CoQ10 dose.

If you are on the typical "low fat - low cholesterol" (and most likely
high carb) diet, cut way back on carbs, especially sugar and the
white foods: flour, bread, potato, rice, pasta and increase your
fats and protein. Saturated fat has been given such a bad name
but is healthy and beneficial. Butter, coconut oil, and olive oil are
excellent choices and when added to one's diet, raise good HDL and
benefit the immune system.

Whole eggs (no matter what your doctor says) ARE healthy. They
contain Omega 3, vitamin E, lutein, iodine and YES cholesterol.
Consuming cholesterol does NOT cause elevated cholesterol levels.
That notion is perpetuated by the medical cummunity and the
drug companies.

Your long list of ailments are on the VERY long list of statin adverse
effects.

Please keep us posted on your progress.

Fran

[garlicprincess]

Hi Fran,

Thank you for the wonderful suggestions and also for the note about the BP Meds, the CoQ10 and vitamin E. I'll be sure to monitor BP. Diet right now is high fiber, low fat and low cholesterol but need to look at protein intake too.

Additional symptoms that I "forgot" to mention:

Borderline high blood pressure 140/90 - (120/70, 100/60 with 12.5 mg atenolol)

Several different diagnosis of gout in feet over the last 10 years

GERD - horrible heartburn every night after starting Zocor, which eventually led to GERD diagnosis

Tingles in feet and hands - intermittent

Tenosynovitis right thumb - trigger finger; surgery scheduled June 5th but going to cancel as I cannot go into surgery feeling this badly!

Intermittent memory loss - fog, forget names and words

What is so bizarre, is that the symptoms creep up on you, and one has the tendancy to think that they are "age related" or perhaps due to a hectic schedule, the high pressure job, stress, too much on the mind, menopause etc and so you don't truly realize the importance of mentioning all of them during a visit to the physician - you just hear "your cholesterol numbers are......" Then you realize after years of joint and muscle pain and taking COX2 inhibitors like Bextra and Vioxx that perhaps you've been chasing the wrong culprit and filling your system full of meds that you possibly didn't need and could be a victim of statin side effects.

When one is used to "running around at 90 mph" and being very very active and then the body starts to deteriorate, it's scary to feel like you are failing physically and something so simple as walking the dogs feels like a huge marathon and exhausting.

It's wonderful to have this forum and be able to share!

Best,
Sarah

[garlicprincess]

Short update here:

Per physician's orders, did cold turkey stop of Zocor & Zetia on May 11th. See my previous post of my unfolding story.

I added the alternative supplements starting May 14th

Fish Oil
Baby Aspirin
CoQ10 - 100 mg am & pm
Vitamin C and the B Vitamins

My joint and muscle pain is considerably less just after 24 hours of starting CoQ10!

Dizziness is abating and not so debilitating

Visual disturbances have improved, sleep quality is getting better. All in all I am totally convinced my symptoms, weight loss, exhaustion and feeling like muscle is wasting away are from the Zocor and Zetia. Still have intermittent memory loss but hopefully this will improve with time.

I am NOT going back on the statins or Zetia.

Still have tests to go through, although strange that none of my physicians have suggested to check CPK...

Thank you for the forum and the spacedoc.net as I would have never known about all the issues with statins.

best,
Sarah

[sos_group_owner]

Hi Sarah,

Glad to hear your doctor fianlly listened to you and that you are now feeling better. You may have to "insist" that your physician needs to check your CPK. It should be an automatic test when someone complains of muscle pain from statins, but the sad truth is that my husband complained of muscle pain for 5 years before any of our doctors ever mentioned the CPK test.

Around the same time, we were under the misconception that red yeast rice was a "safer" way to lower cholesterol. My husband had already switched to red yeast rice and the dr said, "The CPK test would not be necessary because red yeast rice was a natural substance". The fact is that red yeast rice is a natural statin and has the same potential to cause muscle and liver damage. All the same tests should be performed regardless of the statin source.

Some additional info:
* Fish Oil (cod liver oil is also good)
* Baby Aspirin (should be buffered - buffered contains beneficial magnesium and is easier on the stomach)
* CoQ10 - 100 mg am & pm (those with cognitive side effects may need more)
* Vitamin C (ascorbic acid, NOT Ester C)
* B Vitamins (folic acid - 400-800 mcg, B6 - 80-100mg & B12 - 200-250mcg or a B-complex with those amounts)

Fran

[garlicprincess]

Hi Fran,

I have been complaining about muscle and joint pain since they put me on Zocor in 1995 or 1996 and the doctors (rheumatologist, endocrinologist, PCP) kept insisting it was diffuse errosive inflammatory osteoarthritis. Never a thought or discussion that it could be cholesterol lowering meds. I used to pride myself for staying up to date and was always involved with taking care of other aging family members with declining health and really missed this one!

Infact, the only reason it was suggested to stop the Zocor & Zetia for a period of 3 weeks was due to a very fast weight loss compounded by bowel issues. Of course all the tests came back negative for ecoli, salmonella etc! All physicians were/are convinced I have an absorption problem which they say accounts for the osteoporosis and Vitamin D deficiency. It was also suggested to check for kidney function hence the 24 hour creatinine clearance.

I am willing to bet if I decide to go through with the small and large intestine biopsy that the "damage" if any is from the statins, as symptoms have miracously abated since stopping the meds.

I don't feel 100% by any means, but feel like my body is trying to recover from something terrible and making progress with the muscle and joint pain; which perhaps I notice the most because it was so horrible.

Going to insist on a CPK test since I must get stuck once again tomorrow for creatinine - it would be nice for them to "bark up the right tree".

We too were under the same misconception that red yeast rice was safe until researching about the compounds being the equivalent to Lovastatin.

Dr. Graveline's recommendations for alternatives are certainly the way to go for me.

I am also going to report to Medwatch and finishing up the info for the UCSD Statin Study as well as trying to find as many bonafide studies of adverse affects of statins to bring with me to my next drs appt.

It's so frustrating to feel like you've lost the last 10 years because you have felt so badly and that you were on a fast, spiral downhill spin with your health, stopping social & physical activities because of pain and weakness and many of the other symptoms. One doesn't realize how quietly and discreetly the symptoms creep up until the meds are stopped and suddenly one begins to feel some improvement and remembers how they used to feel prior to the meds.

The blessing is knowing there is an alternative and it will just require some individual adjustment with the proper supplements, diet and exercise. Now only to find the right physician to work with me on this!

Best,
Sarah

[garlicprincess]

I am sooooooooo excited!

This morning I called my PCP to check in and let him know how I was doing in regard to symptoms abating since stopping Zocor and Zetia two weeks ago today. He wanted me to stop both drugs for 3 weeks. After he listened to my story, reviewed my labs and other tests, he concurs that my symptoms are a result of the adverse effects from Zocor and Zetia and advises me to stay off the statins and not restart them (I had no intention of restarting them)

I meet with him in early June and have pages of studies and notes to bring to my appointment. I asked for a CPK test to check for muscle damage.

Hopefully my story that I faxed him with all the symptoms, dates of treatment in a condensed edition will perhaps help others who suffer from the similar adverse effects.

Wooooooooooohooooooooooooooooo!!!!!!!!!
Sarah

[sos_group_owner]

Hi Sarah,

That is excellent news and you are definitely on the right track... reporting to MedWatch and participating in the ongoing UCSD statin effects study. Under reporting adverse effects is the the main reason doctors continue to say that statins are well tolerated.

Your conclusions are "right on", especially that symptoms can occur very slowly. The majority of people (and doctors) feel that if someone does not experience statin side effects immediately, then their complaints must be from a different source. The most obvious seems to elude them. The majority of doctors have great difficulty admitting that statins are the cause.

As you are doing your research, another very important process is to document (keep a diary) that ties in your symptoms and tests done to determine underlying causes (in a timeline format that gives you a good overview). Our PCP completely denied that Lipitor could in any way cause my husband's short term memory loss. I kept a detailed diary and made a copy for the doctor. On our last visit I asked the nurse to place this diary in my husband's folder. It would explain why we were not returning.

Fran