reporting side effects

[cls]

Hello,

When you are taken off a statin by your doctor, does he report the side effects you've had, or does it just go in one ear and out the other? Is it up to him or you and where would you go to report all of this?

I think the reason all of these side effects are rare is because they are under reported. Especially when your doctor says "statins don't do all of that."

I should say two of my doctors said that they had pain from taking Zocor. My arm specialist said he stopped taking it and switched to Vytorin. My podiatrist said he had pain in his upper arms and stopped Zocor and now takes Lipitor, but if he has pain, he just stops taking it for about a week or two.

I wish more doctors would find this out for themselves, maybe then they would believe us!!!!!!!!!!!

Connie

[cjbrooksjc]

cls: I honestly think the fuse is lit, Connie. Every day there's more stuff on the internet and news; it's just a matter of time.

Brooks

[Biologist]

"I think the reason all of these side effects
are rare is because they are under reported."
--Connie

That is exactly right.

My guess is less than one in 1,000 suspected cases (BTW, they are all "suspected" as there is never absolute proof) of side effects are ever reported.

It's just more paper work. And no benefits to the physician. Why bother?

They don't. Besides, if there were side effects, that means the doctor may have been at fault for not spotting the situation earlier -- and all his subsequent treatments for the side effects were misguided.

I have not even bothered to ask my physician if he reported it. And "statistically speaking" he is even more likely to report than most: the only time I have ever seen him outside the office was where we both happened to show up to give blood to the Red Cross on a Saturday afternoon in a large metropolitan area. So he is at least somewhat socially conscious, but report statins side effects? I just cannot see it.

I may ask him the next time (it will be a while). It will make the point. He'll know the reason he hears so little about side effects is right in his face: he knows his colleagues. They're just like him, only less likely to report than him, statistically speaking.

Biologist

[catspajamas]

When I was having problems with zocor I would show the doctor the slip that came with my meds showing the side effects of zocor and I would say, see this? They are listing just what I am experiencing...he always said no they can't do that...(so why does the pharmacy bother to give you the info)...anyway after I found out (on my own, with help of a dermatologist of all people) I wrote a letter to the doctor in which I fired him and told him I thought he should of recognized that I was experiencing side effects from zocor....His response?....He sent me a form to sign relieving him of any responsiblity...he thought I was going to sue him.....Should of ..probably wouldn't of gotten very far..but I would of had some satisfaction....I did report my side effects to the drug company though...and they were very interested ...kept me on the phone 40 minutes......I found out you can't be passive about your health care anymore. It isn't like it used to be...and you can't trust your doctor to always do the right thing... old GP friend of ours told me..always ask for generic meds...not because of their being cheaper, but because they have been on the market a long time and have been proven to be as safe as they can be.....Good advice.....

[bucho]

catspajamas: I hope you didn't sign his form! He has no leverage over you whatsoever. In fact, you are the one with the leverage. Much better to not respond, just leave him twisting in the wind, and maybe he'll become worried enough about statins becoming malpractice lawsuits that he'll think twice about statin side-effects from here forward.

The cool thing is, you don't have to do anything. Your non-response will do the job. Or if you prefer (and you still have the form), mail it back with a note declining to sign! For that matter, even if you did sign the form and wish you hadn't, you could send a follow-up letter rescinding your earlier signature and stating that his sending you that form was intimidation. Whether it would stand up in court or not doesn't matter, it would get him sweating (so again you don't need to follow through to have the intended effect).

Biologist: Wondering if you've had any further improvement on the exercise-related issues: Tremors under load, nocturia, and the next-day fatigue. I'm continuing to see improvement on all three fronts, and some weeks it's starting to feel like the good ol' days before zocor! It continues to appear that the one-year anniversary established a bulkhead in my recovery (my vaunted "tree-ring" theory). I'm waiting for the one-year reports from several folks on this site, with my fingers crossed for everyone.

[Biologist]

bucho,

Since my last post on the subject of apparent exercise intolerance, I have not chanced it again. Too many intellectual demands at work right now to risk being brought down by the experience again. So I cannot much comment on the tremors under load. The non-load tremors in my left arm remain. It is also a physiologic / chemical "motivation killer" for me. Just plain brings me down. Your previous comments of "staying on task" are also applicable. Generally, I seem to mentally tire more quickly than I use to and not be quite as sharp at times, but that may improve and certainly fluctuates. Your comments on the one year anniversary seems consistent with another account and is encouraging on its own. Read this guy's comments: http://www.spacedoc.net/board/viewtopic.php?p=3199#3199 about his experience.

To be honest, I am wondering if some of my issues in this regard may partly be a function of poor sleep quality -- something that I am looking to try to improve. And that may not be a direct statin issue (while that could sure be a contributor). It may have to do with something similar to sleep apnea brought on by sinus problems (causing breathing obstruction) which have flared up for me again recently for some reason -- I have heard I am a snorer sometimes -- probably when obstructed; and snoring is often not a good thing. I do not feel refreshed in the mornings to say the least, and worse recently maybe. What I am going to do, starting tonight, is set out some Sudifed (sp?) with a glass of water so that one of the times (or several of the times) I get up for nocturia (usually starting after several hours of uninterrupted sleep), I will dose myself before going back to sleep. (In the past, years ago, I think it worked maybe -- but I never followed up much to reach a definitive finding.) Interestingly, where I previously had given a poor review for Vinpocetine, I recently "did an experiment" where it seemed to help with mental fatigue which may have been associated at the time with sinus congestion during the day causing an accompanying "headache" or a sort. I took Sudifed (actually the "generic" versions which is what I buy) and vinpocetine at the same time. Sudifed is a vasoconstrictor, which makes sense for sinus problems, vinpocetine is just the opposite. I theorize that some of the negative mental / cognitive effects of medicating for my sinus are counteracted by the vinpocetine, and at the same time, the sudifed may counter the unwanted effects (anxiousness) of the vinpocetine for me, while the sudifed fixes my sinuses. I may have found a good combination. Too early to say. It was when I took Vinpocetine without sinus issues for weeks that I had the poor experience with the vinpocetine.

Also, to complicate things, I have been taking Ambien regularly for a couple of weeks and that can probably effect quality of sleep after a few days, and it certainly has a rebound effect as far as going without it after using it for a while -- which also shows up in waking hours by making me a bit more anxious. In fact, I feel a bit nauseous in the mornings now and I think that is a side effect of "long term" usage of Ambien (something I plan to research before long).

Yes, my noturia has been more noticeable off and on since the time of lifting some weeks ago.

You had asked in another thread about "nerve hiding" viruses (e.g., shingles). I think your theory could be correct. On the other hand, I have had "activated" (as virtually all people carry the virus) herpes simplex 1 (on the lips thing) since college (in fact, I remember the exact time of infection from one of the cutest girlfriends I have ever had, and am still undecided if it was worth it or not...) and it has not been a problem for years, Zocor or not. No episodes of it. So it must be an individual (gene specific) situation if it is affected by statins, or indeed, if all such viruses are similar in that regard. However, a suppressed immune system, as facilitated/mandated by statins, sounds like a likely contributor -- and particularly in your case as generally you seem to have a higher cranial nerve involvement with your side effects than I do (while I share a lighter case of some of your "perception" symptoms). Fortunately, you do not seem to have the peripheral motor nerve problems that I do.

I am cautiously optimistic about the Tree-Ring Theory. The mind and body have remarkable plasticity and regenerative capabilities -- particularly in the absence of all-powerful super-evil anti-biotic (i.e., anti-life), evolutionarily-generated and murderously conserved masterpiece biotoxins: Statins.

On another subject:

I encounter situations from time to time (as I did today on an out-of-town "fact gathering" situation for work) where I decide to "diagnose" certain individuals as likely being under the influence of statins -- my batting average is over 600 so far. They are often impressed from the start that I suspected it. But I cheat. Well, partly I do. I use demographic profiling techniques including socioeconomic criteria (middle class or higher), age, job-type, etc., etc. And then, after confirmation, I set them straight. No holds barred. Then to finish up and reinforce the job, I send them to this site -- I let them ask for the website address after business just to make sure they were duly impressed with my presentation, if they forget (they rarely do), I give it to them anyway before I leave. Here's how I look at it: I save lives -- well, kind of. Better than that actually, we save "quality of lives" and the same for all who know and depend on them too, and all the people then tell. I wish someone had done it for me. I believe I make believers out most of them, and even if I don't get them to tell their prescribers / perpetrators to take a hike at their very next appointment, they are now "sensitized" enough to have a chance to understand what's happening when the damage starts. The lady today, who helped me find some documents had got started on simivastin a month ago (she did not recognize the name Zocor, so at least that means her doctor was at least cutting her some slack on costs). They owe us. More than they could ever repay, even if they ever had the chance, which they will not. I feel good about it. Even makes up, in a small way, for some of Falwells years of crime against humanity. Oh, and Kathy, in case you are reading this about now, you're welcome! Stop the statins. Go and sin no more...

BTW, Excellent advice to catspajamas and all the rest of us. The power of silence is certainly underrated.

OK, missing Jon Stewert and the Daily Show. Gotta go!

Biologist

[Brian C.]

Biologist, re your sleep problems. May I recommend that you use a Breathe Right strip to keep your nostrils open during the night (I have been doing this for years) and also that you take the pure L-tryptophan available from here :

*http://www.biochemicals.com/products.htm

My wife takes two 500mg capsules per diem (she also wears wax earplugs!)

Brian.

[bucho]

Biologist,
Excellent, thanks for a very rich post. I would venture that getting the herpes simplex 1 was very much worth it!

Sleeping problems: You have just described exactly what happened to me. Once again we seem to have very similar statin damage experiences. About the time all my Zocor problems erupted, I found that my nose would close up (complete breathing obstruction) whenever I put my head down to sleep. I would try to breathe through my mouth, but when (finally) asleep I would often awaken gasping for air, or have dreams of suffocation. Sleep was very unrefreshing. At the time, I hadn't yet figured out that Zocor was the cause of my problems, and my leading theory at the time was a spinal cord lesion in the neck area. (This nasal symptom was consistent with some spinal injuries in the cervical region). Most frustrating, the nose would be okay until laying down, at which point it would immediately close up.

It has taken a full year for this nose-closing problem to resolve. At last I'm experiencing truly restorative sleep. But I went most of a year in headache-prone, bleary agony, never fully rested or refreshed.

How to get through the year? I second Brian's recommendation to use Breathe Right strips. They helped me, but were not the complete solution. The solution had to include using "4-Way" nasal spray (in essence, a steroid I believe, available OTC in any drugstore) to open up the nose. But, you have to use it sparingly, because after a few days it can have a rebound effect where it causes the nose passageways to swell up and close even worse than the original problem.

Here's precisely what I did and how I got around the rebound effect: 1) Keep nasal spray on the nightstand next to your bed; 2) immediately before going to sleep, inject ONE spray into ONE nostril (the recommended 2 sprays just encourages rebound); 3) If you awaken later in the night with breathing problems, inject ONE spray into THE OTHER nostril. And so on through the nightly awakenings. I could usually get through the night with no more than 3 such dosings. This crafty method prevents a rebound swelling in both nostrils at the same time (which guarantees a rude awakening of suffocation!), so with any luck you can always breathe through one nostril. I was able to carry on with this routine and get real relief for several months with no problems (despite label statement to discontinue after 4 days max -- say, that's a label warning statins should include!).

Another great insomnia help is Lunesta. Ambien stopped working for me after a few months, and caused headaches. If anything could serve as a drug company penance for inventing statins, it is Lunesta. It relaxes, then sneaks you off to sleep, with no apparent side-effects (except recently I noticed, ... hmmm...., a foot growing out of the back of my head...).

Months ago I experienced your same trepidation about physical activity, based on the resounding and long-lasting repercussions. But I think you're midway through the first year, which is a particularly frustrating point because (at least for me) my recovery got stuck in a plateau for several months at that point. I still have mild tremors (much reduced) if I roll my shoulders, and some jaw tremor (reduced as well), but in recent weeks seemingly no repercussions due to workouts. The acid test will be if I can ever return to windsurfing (which two years ago would surely wipe me out for 2 days).

Regarding staying on task, at work nowadays I have to constantly veer away from task and briefly surf the internet (going to this site, or checking some stock investments, or the news, or whatever) to clear the brain before I can make further progress on my work possible. Never had to do that before.

Yes, eventually each of us statin victims becomes the equivalent of "ghost-busters" for other folks who are new to the statin horrors. Keep the faith!

[bucho]

I forgot to mention, the nose-closing problem was definitely exacerbated by exercise and seemed to be part of the post-exertional malaise syndrome.

Also, I had a host of other symptoms consistent with a cervical spine injury (basically, all adding up to a mild form of autonomic dysreflexia which normally affects only paralysis victims). These were problems with digestion, heart rate, and blood pressure, all going haywire at random times of day, and especially at night. It was a terrifying time (about 14 months ago). And now it's clear, all these things were caused by Zocor.

[cjbrooksjc]

Bucho, Brian, Biologist: I had terrible sleepless nights: waking, gasping, snoring, twitching and was diagnosed with Apnea; also had the clogged nose thing. I noticed if I slept on one side - that nostril would stop up and if I turned over, the other would. I declined the CPAP thing for Apnea - they seemed to eager to sell me on it. All-in-all I sleep better now - still some nose probs, but the Breathe Right strips helped a lot (I only use them occasionally now). Are we all ZOCOR casualties? There seems to be some sort of common thread running thru our symptoms.

Brooks

[bucho]

Yes, absolutely, I had the same situation! In my case the pillow-side nostril would jam harder than the upper one (but the upper one was bad enough to cause suffocating awakenings). But yes, it was as if gravity was pushing the inflammation downward to the lower nostril.

Now that we're getting into detail, here's one that worried me a lot at the time: On many nights during these stuffy episodes, I would awaken with a colorless, odorless fluid draining out of my ear (the one on the pillow). This occurred for more than a year (started 6 months before I stopped taking Zocor), tapered off over the year after I stopped, and only recently stopped. I was afraid it was cerebrospinal fluid, which supported my cervical injury theory at the time. But here's the main point: The lower nostril plugging and the lower ear draining were both linked to exercise. The more athletic my day was, the more these things acted up at night.

The ear drainage was not water. Due to ear infections in childhood, I developed a habit of never allowing water in my ears (except when windsurfing on rare occassions, but this problem occurred long after I had stopped windsurfing due to statin problems).

Anybody else experience the lower ear drainage thing?

[Brian C.]

Hmm, this is all rather interesting. I - and my doc - put my nasal/sinal/post-nasal drip symptoms down to a mildly deviated septum.
I was on Zocor for nearly 10 years, followed by 7 on Lipitor. The symptoms seem to have been around for as long as I can remember.

I too keep a nasal spray (Beconase - beclomethasone dipropionate) at my bedsite for when things get really bad. I try to keep usage to the bare minimum.

Did I mention that I irrigate with warm saline solution most mornings using an Indian neti pot? :)

Brian.

[cjbrooksjc]

Bucho, et al: I have been suffering from sinus problems and allergy reactions for years; long befroe I began Statins, and I believe the Statins simply aggravate the conditions. Bucho, the fluid was probably just sinus drainage running from your throat down your eustachian (sp?) tube and into your ears. Hold your nose, close your mouth and blow out like a diver or pilot trying to clear atmospheric pressure problems, and you will be introduced to this tube. If you had a lot of ear infections as a child you may have perforated drums (either naturally occuring or medically created) allowing the fluid to run freely out of your ears; one of my ears is like that. At any rate, I think the possibility of spinal fluid is remote as there is no direct channel for the fluid to follow. Bear in mind I am relying largely on anatomical biology classes from many years ago (yes, we were still walking upright then) so, be advised. As for the exercise link, I don't know. I've not reached the point I can return to the club with any confidence, and I have no other opinion on it.

Regards,

Brooks

[Biologist]

Brooks nailed it.

Thanks for the reading, guys. Not much time for comments and particularly anything of substance from me. Just taking a break -- one of many as b/Bucho suggested previously in this thread. Use to smoke two or three years ago, now looking forward to one of my "equivalents," a 0.9 mile walk around and back to the home office. Hell, that's where, like the smoking of old, I get some of my most momentous insights into whatever project I happen to be on -- I suspect I might have come up with Brook's explanation over that time this time (?), now on to other issues. That the fluid it is clear is indicative of no infection being present which tends to be pretty diagnostic in itself in the sinus world leaving mechanical and stepped-up production issues, off hand. Back to smoking, bosses decades ago figured out pretty quick that my smoking breaks were a good thing! Pacing back and forth, often oblivious to conversation in the lobby areas -- the equivalent of the Watercooler area with other smoking outcasts in the business high-rises -- was where their bucks were made.

I am pleased to hear about DEB's checkout for ALS in another thread but will have to wait to comment on that too.

Good reading all around though, including this thread. I plan to try some or all of the suggestions.

Biologist

[Biologist]

Good walk.

Now back to work. Drats!

Did want to comment however on one other thing:

"At the time, I hadn't yet figured out
that Zocor was the cause of my
problems, and my leading theory at
the time was a spinal cord lesion in
the neck area."
--bucho

The spinal cord lesion idea is still valid as a statin issue, while probably not directly causative of the drainage issue (but maybe). I entertain the Nerve Lesion Theory as a possible mechanism for problems. It just seems to make sense. Also, such lesions can heal (as far as I know) and that would explain improvement over time. Many of your peculiar perception symptoms subsiding in general and being affected in specific via exercise -- including the shingles, is interesting and perhaps supportive of the theory. Shingles is cervical ganglion-related; others you mentioned appear cranial nerve related, but they're all fairly related and not just geographically, but morpogenisis-wise (I believe I have properly used that term here) and function-wise. Nerve lesions versus nerve death sounds a lot better to me.

Just some thoughts.

Biologist

[bucho]

Brooks,
I agree with Biologist that your explanation holds for my experience. BTW, while I was relieved to eventually realize I didn't have a major spinal injury, I did have neck problems when younger and I do believe the statin compromised that old injury. Even today, if I'm not careful with neck/shoulder/head posture and particularly careful in that regard when exercising or stretching, I can bring back a mild form of the autonomic instabilities I cited earlier (and the sensation of entire body pulsing at about 4 Hz).

As with most statin sufferers, I had a lot of tests done, including in my case a brain MRI, to rule out doctors' suspicions of encephalitus, meningitis (but no fever....) and arterial lesions. Of course the brain health checked out A-OK.

Instead, I now chalk everything up to a general compromise of the cells that make up my physiology. That sort of debilitation would probably be too subtle to show up on an MRI. I think it was Brian who summed up statins with the crisp statement to the effect that, "As we age our cells die; statins accelerate this process." (Was that you, Brian?) I like that summary, and would add to it the corollary, "When you take a statin, every cell in your body begins to suffer starvation." That's why statin damage can manifest in virtually any form or symptom, especially exacerbating old conditions.

[Brian C.]

bucho: "As we age our cells die; statins accelerate this process." (Was that you, Brian?) I like that summary, and would add to it the corollary, "When you take a statin, every cell in your body begins to suffer starvation." That's why statin damage can manifest in virtually any form or symptom, especially exacerbating old conditions.

Yep. 'twas I Squire

After my "Layman's Research" my respect for doctors has plummeted. Even a statinised moron with zilch background in biology like me could see that putting the screws on our mevalonate pathways leads to infirmity sooner or later. That's why I now refer to "statin disease" and classify statins as Incapacitating Agents in the correct MOD/Dept. of Defense sense.

It was only because their action is (a) unpredictable and (b) less than instant that the military lost interest I am sure.

I can just imagine some Chinese warlord arranging to have bundles of red yeast rice dropped into an adversary's water wells one stealthy night then patiently biding his time before attacking and defeating the debilitated opponents

A fanciful conjecture I am sure.....

Brian.

[Biologist]

"Instead, I now chalk everything up to a general
compromise of the cells that make up my
physiology. That sort of debilitation would probably
be too subtle to show up on an MRI."
--bucho

That's how I look at it. I am hopeful that there can be some appreciable repair which I believe there is evidence for. The hyperlink I included earlier in this thread appears to be a good example of cognitive / brain power improvement -- something I am hoping for. Basically the guy is saying he regained his IQ points over time lost to statins (a loss of which has been well documented in a couple of well-done experiments). That means an improvement in cellular performance and/or better communication (e.g., hormone production / regulation) between cells and/or the repair of the supporting extra-cellular matrix. (Note: anything in the body that ain't cellular itself is produced by the cells and exported from the cells -- like much of the structure of bone and connective tissue -- and probably neural tissues / structures.)

"Of course the brain health checked out A-OK."
--bucho

In my case, after statins, I'm not so sure. I have noticed I am a more blunder prone. BTW, at my request, SpaceAdmin fixed a suspected one of mine earlier in this thread. I wish statin blunders were as easy to fix.

Biologist

[bucho]

Biologist,
No harm done. I'd already pretty much "outed" myself (oops, a misleading metaphor) out of concern that friends, family, and colleagues not fall victim to statins themselves. But your consideration is most appreciated. It was like the movie "Men in Black" to go back to recent posts and find parts of the past missing!

Best Regards,
(Dr.) bucho