Life post-Lipitor - an update

[Brian C.]

35 days have past since coming off Lipitor (was on 80mg). Still taking 9g Questran & 500mg Niaspan plus lots of supplementary goodies.

Blood test Tuesday :
TC 8 mmo/l (312 mg/dl) - was 4.6
LDL 5.9 mmo/l (230 mg/dl) - was 2.7
HDL 1.3 mmo/l (50 mg/dl) - unchanged

Lp(a) 0.21 g/l - was 0.4!

This last result I consider of much more value than TC & LDL and what a result, almost halved. Yet last time my doc said it was genetically determined! Oh yeah?

After the blood test met a friend for lunch and trailed a few music shops (he's a pro musician). Disappointed that, although I hadn't been walking fast, I experienced a tachycardic episode. The first for several years.
Also it has taken me a good two days to recover from the jaunt while my body restored to its usual modest (i.e. low) energy level.

Keepin' the faith

Brian.

[cjbrooksjc]

Brian: Good to see the test results - sorry you had an episode. My thoughts are with you. Hope you are feeling better soon and continue to improve; keep the faith indeed!

Regards,

Brooks

[Brian C.]

Thanks Brooks.

The more I learn the less I am surprised at what has happened/is happening to us.....

Brian.

[Brian C.]

Apparently Niaspan (slow-release nicotinic acid) can produce very similar side-effects to statins, maybe this is why progress re fatigue is so far non-existent after coming off Lipitor 6 weeks ago (I'm on 500mg Niaspan per day). Anybody know what the stuff does bio-chemistry wise? I don't think it acts on the mevalonate pathway - but I may be wrong.

Cinnamon DOES so act so I have stopped taking that stuff.

What is a po' heterozygotic-FH boy to do.....

Brian.

[Biologist]

Brian,

Good question about how that stuff works. I'm curious but too covered up with work deadlines to research it. If I had the time, I would look into "exercise intolerance" for my own situtation. Everytime I have a busy day including working out with weights, I am drained mentally and physically for a couple of days. I wish I had not worked out the day before yesterday because it appears to still be is effecting my performance today.

What I want to know is whether this is something that I will always have to live with or if it gets better with time.

Good luck.

Biologist

[Brian C.]

All we can do Biologist is keep taking the "goodies" and avoid the "baddies"....and hope. I must admit the fact that I took the filthy stuff for such a long time (17 years) and have been chronically fatigued for most of that time is a constant nag.
Last week it took me two full days to recover from a trip into London.

Still, we've got to
<cue music>

"Look on the briiight side of life...."



Brian.

[Ray Holder]

It makes me feel weak just thinking about working out with weights!!

I have little trunk muscle left, so very little room to store carnitine, that just a few extra actions in a day, eg staggering down the garden path to water my little orchids in my greenhouse (with a hose, I cannot carry a can), and although easy at the time, seems to deplete my store, but rapidly, and it takes a long time for supplemental carnitine to get into place, I easily take a bit too much and have a wakeful night. It's a bit of a paradox, in some ways carnitine works quickly, but in this way only seems to filter in to place slowly. One needs a "state of charge indicator", all that seems to be available is a carnitine blood level test, and thats not much good in a day to day domestic situation.

I suppose writing posts also takes some toll in my situation, but one must never give up the challenge.

Ray

[cjbrooksjc]

Brian: Nicotinic acid is another name for high strength Vitamin B3, or NIACIN. Niacin causes 'statin-like' problems for a lot of us it seems; it did for me even in a multi-B vitamin cap. Go to this segment on Spcacedoc; you'll find some information there. This is the url (remove the *):

*http://www.spacedoc.net/cholesterol_lowering_supplements.html

Below is a small escerpt from that site re: Nicotinic Acid:

**************************************************************************************************************************

Niacin is available in several different supplement forms: niacinamide, NICOTINIC ACID, and inositol hexaniacinate. The form of niacin that is best tolerated with the least symptoms is inositol hexaniacinate. Niacin is available as a tablet or capsule in both regular and timed-release forms. The timed-release tablets and capsules may have fewer side effects than the regular niacin; however, the timed-release are more likely to cause liver damage and are therefore not recommended for long-term treatment. Regardless of the form of niacin being used, periodic checking of liver function tests is recommended when high-dose ( 2 – 6 gm per day ) of niacin is used. A starting dose of 25 mg regular niacin is reasonable with 25 mg increases every few days to tolerance or effect.

**************************************************************************************************************************

Recovery seems like leaving a hen yard at times: It's hard to get out without stepping in something nasty.

Regards,

Brooks

[cjbrooksjc]

Brian: Found one other thing: its not a great asnswer, but it is an answer:

*http://cholesterol.about.com/cs/nicotinicacid/a/niacin1.htm

Below (excized) is the pertinent paragraph. Note the last sentence.

***************************************************************************************************************************************************************************************

Although niacin has been found to lower triglyceride and low density lipoprotein (LDL) levels and raise high density lipoprotein (HDL)levels, the degree in which this drug works varies from patient to patient. That is, niacin may significantly reduce triglycerides and LDL level in one patient, but may be ineffective in another patient. The mechanism by which niacin works is not completely known.

***************************************************************************************************************************************************************************************

Ah, well...

Brooks

[cjbrooksjc]

Ray: I often reflect on your unusual (even among us sufferers) circumstances and want to offer you my personal thanks for introducing me to l -carnitine; it has made a great difference in my life. I, along with the others, certainly feel robbed of health and a happy outlook by these damnable drugs, but being in Bournemouth and unable to walk the shore must be a special punishment; would that I could offer my hand to help; failing that, I extend my thanks and my sympathies.

Fondest regards,

John Brooks

[bucho]

Regarding the recent comments about exercise intolerance, I have found that things are much better at the one-year anniversary of quitting a statin (Zocor in my case) than they were at 6 months. Biologist, your reports sound almost identical to my experience (mentally and physically drained for 2 days after a workout). For me the situation began to improve just this month (13 months off statin) to the point that I had two workouts last week, using record-high weights (!), and NO REPERCUSSIONS (except mild nocturia)! Don't know if this is a permanent recovery yet or not. But just 6 weeks ago, and for a full year prior to that, those two workouts would have left me ready for the morgue (albeit equipped with a urinal).

I now have a theory (not prejudiced by any real biological knowledge) that maybe our cells / systems have an annual growth cycle, possibly linked to seasonal cues, much like tree rings (where the number of rings imparts the tree's age in years). I finally have a full "tree ring" of growth between today and the last time I took a statin. And voila!, suddenly I can exercise again.

So if my experience is an indicator, I would predict that you (Biologist) may be much better off around December, even if it looks bleak immediately prior to that time.

Brooks, I second your comments to Ray, whose postings helped me a great deal as I first came to grips with my statin damage and how to manage a recovery.

[cjbrooksjc]

bucho: Boy, do I hope you're right. C'mon October!

Brooks

[Brian C.]

Thanks Brooksie. I'll see what I can uncover re the biochemistry of B3 action - when I recover from xrn's visit today

Ray Holder : It makes me feel weak just thinking about working out with weights!!

Same here!! Those crazy yanks!

bucho, how long were you on statins?

Brian (who is now counting the days to April 2008)

[poohhel]

Add me to that count down list... March 26th is my Statin Free Anniversary :P

[poohhel]

The above should read March 26, 2008 will be my 1 yr anniversary of being Statin Free ... ha... I have vacation and Europe on my mind...Sorry :?

[Ray Holder]

Thanks friends for those kind words.

I have heard today that Tessa Jupp of W Australia polio network, who first put me on to carnitine, has been to a polio conference in Miami, and having given workshops on W.A. procedures, was unable to leave her hotel because everywhere she went she was followed by groups of people asking questions, and saying "No-one ever tells us things like this".

So it's not only from the multi pound/dollar research establishments that true benefits reach the world, someone beavering away with the intention to help fellow sufferers, and not just gain financial reward, can make a real contribution to knowledge.

Medicine seems to have a lot of territory regarded as the possession of a particular specialism, for example post polio belongs to neurologists and not metabolism, its true home. Similarly statin use is attached to cardiology, perhaps toxicology would be a better department!!

Thank God for the internet today, when I started looking for statin troubles 7 years ago there was nothing to be found, how different now!!

Ray (can't get smilies to work for me)

[Brian C.]

Ray : ...statin use is attached to cardiology, perhaps toxicology would be a better department!



Wikipedia credits the discovery to a Japanese scientist but I read somewhere the allegation that research on the action of red yeast rice was passed to Merck by the US Military. May be apocryphal or just noise but certainly I would expect the toxic defence of an obscure Chinese herb to be of interest to any nation's Chemical and Biological Warfare Laboratory.

Brian.

[bucho]

Brian,

I was on Zocor 20 mg for 3 years before the problems erupted, and 3.5 years before I figured it out (thanks to this site). You can find my original horror story post by clicking on "profile" at the bottom of this post, then click "find all posts by bucho" in the profile window. The posts are sorted in reverse chronological order so you have to scroll down to the last page to find it.

I've found this "find all posts" feature useful in refreshing myself as to the original story for others on this forum from time to time. Helps to keep everything in context (especially with a statin-damaged memory). I think this web site has a lot of useful features that make it particularly nice to use.

Yep, we yanks may be crazy, but we've noticed the taxes creeping on everything lately, INCLUDING TEA, and want to be ready "just in case" the Crown is thinking about a rematch..... (!)

bucho

[Brian C.]

bucho : ...we've noticed the taxes creeping on everything lately, INCLUDING TEA, and want to be ready "just in case" the Crown is thinking about a rematch..... (!)

Ah, so THAT'S why Her Majesty paid her visit

Brian.

[bucho]

Yeah, just what we all need, another battle-front! But we're ready with all those WMDs we found.....

Best Regards,
Bucho