No more Zocor--- still pain!!!

[eva2]

Hello, after searching for answers to my leg and foot pain and inability to get out of bed in the morning, I came across this site. I was on 40mg, of Zocor (now age 47) my cardio said we needed to treat atherosclerosis aggressively as there is no cure....For 2 years, my symptoms were mild, with menopausal symptoms it was difficult to see the Zocor connection,
in my 2nd year, I did mention my total exhaustion and some stiffness in my feet every morning...he assured me it was fine. This past August (my 3rd year on Zocor) I experienced severe leg cramps and pains while on vacation...after 2 months of severe pain, I stopped the Zocor myself. When I went to tell him, he was "oh great, you should, its not too good for you anyways"...ofcoarse no more treatment for the calcification he thinks I have (scan showed signs, family history of heart disease). It has been 6 months since I quit the statins and my leg pains are better but my foot pain is actually worse, I am still extremely tired daily...The blood tests were normal for any possible liver damange....is this normal do other people still go through this after stopping....Help, I am suffering in silence..........and I am scared. Sorry for the long note, it is my first time here and would appreciate some advice. Thanks, Eva

[sos_group_owner]

Hi Eva and welcome to Dr Graveline's forum.

You are experiencing PN - peripheral neuropathy. It's a more common side effect than doctors are willing to admit. And a liver function test does not uncover PN.

I was searching for info to refer you to and came across a very interesting website. Since PN is very common in both cancer patients and those taking statins, the article does refer to cancer patients, but also discusses statins and PN.

Please read the article and if you have any questions, I'll check back tomorrow and try to help you.

Peripheral Neuropathy article
ww.hrpca.org/pngeneral.htm

Fran

[eva2]

Thanks for the quick response, I did read the article you suggested. I am under the impression that since my pain is bilateral that it sounds like my PN is drug induced...the article also suggests that the pain should stop within 6 - 8 weeks of stopping the drug. This is where I am confused. mydoctor also thought the pain should have stopped. I cannot seem to data to suggest otherwise, unless I have something else (perhaps MS) and it is just a coincidence??? Being Greek by birth, I do not fit the typical MS patient background. Also, my problems with lack of sex drive, joint pain, and exhaustion all began within 6 months of starting the statins and are still going strong. I am living in Canada and because of our medical system, we have no choice in the tests they perform...we are at the hands of our medical system which everyone thinks is so great....NOT!!

[Cathy]

I still have the problems I know were caused from statin use. Sorry to say it will be 2years in May that I stopped taking them, with hardly any improvement. I live on strong pain meds and still have pain everyday. PN, sleep problems the list goes on and on. I still have hope that someday I might be half-way normal again. It seems like once you have the damage, no one knows what to do about it. Hopefully yours will resolve it-self...good luck........ :cry:

[sos_group_owner]

Hi Eva,

From the link I gave you:
(11) If peripheral neuropathy is bilateral, drug induction is usually attributed thereto...

If that is the term your doctor used "bilateral", then statins (if they are the only new drug during that 6 month period) are most likely the cause.

Re: the article also suggests that the pain should stop within 6 - 8 weeks of stopping the drug.

For some 6 - 8 weeks for pain to subside might be true, but each person is very different when it comes to statins. Short term - long term - dose - dose increase - changed from one statin to another - your body VS someone else's. Some side effects are immediate... some take years to develop and are usually attributed to something else, usually old age.

My husband was on statins for 8 years before he started to develop Alzheimer's type symptoms, including TGA. Looking back now, cognitive decline started when Lipitor was increased from 10mg to 20mg.

Re: Also, my problems with lack of sex drive, joint pain, and exhaustion all began within 6 months of starting the statins and are still going strong.

Quotes from Dr Graveline:
"Since cholesterol is the substrate for some of our most vital hormones, including testosterone, progesterone and estrogen, one can logically expect sexuality problems if this precursor substance becomes sufficiently lowered."
Meaning "cholesterol" which is vital for all bodily functions.
http://www.spacedoc.net/libido_statins.htm

"Another complex of symptoms results from neuropathy with ringing in the ears, weakness of extremities, numbness, decreased ability to feel heat or cold and altered sensation anywhere in the body – numbness and tingling of the feet being a common early sign. Lack of sufficient CoQ10 dependant energy reserves results in tiredness, shortness of breath and easy fatigability and congestive heart failure with ankle edema, nocturia, shortness of breath with recumbency and the need for extra pillows for sleep.
http://www.spacedoc.net/warning_signs_statins.htm

Are you taking any CoQ10? Many get benefit as statins deplete our natural CoQ10, hence all the nasty side effects.

Start with 100mg and increase as needed. My husband took 400mg daily for several months and now takes 200mg mtce. Some take even higher doses before they get any relief. The only know side effects is that CoQ10 can lower BP, so if you are taking BP meds or you have naturally low BP you will need to monitor your BP.

The best CoQ10 is in gel form (not powdered) and contains some vitamin E or take with a vitamin E supplement. You can find CoQ10 in Walmart, drug stores and healthfood stores. When we were traveling in Canada about 4 years ago, I had trouble finding doses higher than 30mg & 50mg. If you have the same problem you might need to order higher doses on the internet.

Let us know how you are improving.

Fran

[eva2]

Thank you both for your reply, I will begin the CoQ10, I have also heard about this. My blood pressure has always been normal until recently when my diastolic pressure drops to 50 -60, yet my systolic remains at 110 - 125, wonder if this change is also related to this whole matter?? My doctors can't seem to answer this, come to think of it, they don't answer to much of anything.
I am very sad that something given to us for a better life has actually caused such problems. Obviously the medical community now does realize these statins were not the wonder drug they thought they were. I had no problems of these sorts until I began this drug....ofcoarse I cannot go back but I will now join others in telling people about the advese effects of these drugs. Since my cholesterol and heart issues are familial and not due to diet, I guess that doesn't leave me much in the way of treatment. Thanks again for your support. I will let you know how this all works out.
Eva

[eva2]

Cathy,
You were obviously on cholesterol meds to reduce your numbers...what are you doing now to treat your heart health?? Did your numbers bounce back very high after you stopped the meds. I am so confused now.
Thanks,
Eva

[Cathy]

I take 3,600mgs of omega 3 and losing weight. My numbers were not really high, it is my triglierides (?) that were high. I was on 80mg of lipitor for that. They are still high but I'm taking my chances. DR. not real happy, but my quality of life, verses quanity is more important to me. I might as well have been a vegestable on the statins. I'm having a hard time dealing with what lipitor did to me, because if my Dr. had only listened to me, this could of been avoided. I completly trusted him. Never again!!!! Also, I had one Dr. complety agree, lipitor did this without any doubt, and I sat and cried in his office, finally someone confirmed it!!! Unfortunately he passed away 6 months latter. So back to square one. Sorry this has gotten so long, I tend to get on my soap-box on this subject....... Cathy

[eva2]

Cathy,

I come from the same place, trusting doctors to never again, I too feel your pain and obviously many, many others. Thanks for sharing your story with me.
Eva

[billcat]

Do either of you take CoQ10 supplements? I understand the statins deplete this substance in our bodies.

I took Zocor for several years, but also took CoQ10, and still had severe muscle aches, weakness, etc, but since I stopped the Zocor all that has gone away.

CoQ10 won't hurt you; it's worth a try if you don't already take it.

[sos_group_owner]

Cathy wrote: My numbers were not really high, it is my triglierides (?)
that were high. I was on 80mg of lipitor for that.

Hi Cathy,

80 mg (max dose) of Lipitor is "overkill" to control triglycerides.
Elevated or high triglycerides are usually due to a high carb diet.
The white foods: sugar (biggest offender), flour, bread, potato, and pasta,
are the foods that cause high trig's.

The low fat low cholesterol diet usually results in a diet high in carbs.
(What else is there to eat???). So the diet that most doctors recommend
is counter-productive and unhealthy.

By reducing carbs and taking cinnamon is the healthiest way to lower
triglycerides and no side effects. Cinnamon (C. cassie) is available in
(500 mg) capsules. Take two daily.

Cinnamon also stabilizes blood sugar levels and is good if one is diabetic.

Fran

[mousa]

Dear Eva2,

Where abouts in Canada are you? If you're on the west coast I can give you name of the very best GP.

Val