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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by maxx44 on November 24, 2003, at 18:33:28
neuroleptic malignant syndrome, NMS, a possibly lethal complication of old-line neuroleptics was first noted with haldol, but any classic neuroleptic was found to produce NMS in apprx. 2% of patients. it was thought that the newer 'atypical neuroleptics' would not produce NMS, due to their weaker dopamine blockade profile, the assumed cause. this has been shown as incorrect. while designed for the schizophrenias, 'atypicals' as zyprexa and risperdal, etc., were approved for affective disorder patients and have shown efficacy in acute mania. 3 years ago, as a bipolar with refractory depression, i was put on a risperdal trial of 2mg/day and swiftly experienced incontinence, odd flu-like intermittent fever, leg-muscle rigidity, loss of mental status. i informed my drs., but they assured me nothing was amiss---even though i was sleeping 16+ hours/day and essentially 'zombied'. at that time there was little data on this form of NMS. atypical NMS may appear as the classic form, or a weaker varient. recent studies now term this 'atypical NMS' and call for a 'spectrum' approach. in other words the patient may experience fairly classic NMS, which strikes swiftly and requires immediate icu care and has a 20% mortality rate, or as my case, a slower course, which may or may not escalate to full-blown NMS. i feel my drs. are excellent, but would appreciate any input on this reaction. thank you.
Posted by ace on November 24, 2003, at 22:56:14
In reply to atypical neuroleptic syndrome, posted by maxx44 on November 24, 2003, at 18:33:28
> neuroleptic malignant syndrome, NMS, a possibly lethal complication of old-line neuroleptics was first noted with haldol, but any classic neuroleptic was found to produce NMS in apprx. 2% of patients.
I think 2% may be a bit overstated- where did you here that figure?
it was thought that the newer 'atypical neuroleptics' would not produce NMS, due to their weaker dopamine blockade profile, the assumed cause. this has been shown as incorrect.
It was actually thought that they would produce EVEN fewer NMS's. Also, I'm not sure that they do infact have a 'weaker dopamine profile'. At equivalant doses I thought their action on dopamine was similiar. I thought there differences lie, a lot, but not always, in their affinity for 5HT receptors.
while designed for the schizophrenias, 'atypicals' as zyprexa and risperdal, etc., were approved for affective disorder patients and have shown efficacy in acute mania.
I don't believe either of these have recieved FDA approval for any 'affective' disorder. I could be wrong.
3 years ago, as a bipolar with refractory depression, i was put on a risperdal trial of 2mg/day and swiftly experienced incontinence, odd flu-like intermittent fever, leg-muscle rigidity, loss of mental status.
How fast is 'swiftly'. Did you also experience priapism?
i informed my drs., but they assured me nothing was amiss---even though i was sleeping 16+ hours/day and essentially 'zombied'.
Unfortunately Risperidone, initially, can cause these complaints as s/effects.
at that time there was little data on this form of NMS. atypical NMS may appear as the classic form, or a weaker varient. recent studies now term this 'atypical NMS' and call for a 'spectrum' approach. in other words the patient may experience fairly classic NMS, which strikes swiftly and requires immediate icu care and has a 20% mortality rate, or as my case, a slower course, which may or may not escalate to full-blown NMS. i feel my drs. are excellent, but would appreciate any input on this reaction. thank you.
Thanks for sharing your experience on this...can you describe any other symptoms you experienced and how this atypical NMS was resolved in your case. I certainly will research this.
Thanks again,
Ace.
Posted by maxx44 on November 25, 2003, at 0:19:10
In reply to Re: atypical neuroleptic syndrome » maxx44, posted by ace on November 24, 2003, at 22:56:14
search 'atypical NMS' i already have and so many other references. i said it was believed NMS would be no problem due to weaker dopamine blockade---it's on-line. 2% would seem the upper range, but my experience with atypical NMS is that as it doesn't present as classic NMS, it may go unnoticed for some weeks or not be seen. please. i have no interest in debate. your resarch is very incomplete---understandable as the area is new. it would be more effective if you had experience with this and relied less on erudition---but it's on-line---so that should be no problem. this is rare. i have a daughter stable on zyprexa. these drugs have, at least short-term, been good for many. however, the long-ter risk of TD, for instance, has not been shown. as for me, i had incontinence day 1. no priapism. riperdal is not trazadone--never seen a word on it with atypicals. simply put---yeah, more research---i think we will come to aggreement.
Posted by maxx44 on November 25, 2003, at 0:39:31
In reply to Re: atypical neuroleptic syndrome » maxx44, posted by ace on November 24, 2003, at 22:56:14
a year ago there was one sight on atypical NMS, now look. after 3 months of trial and near immobility (immediately prior to drug onset i cycled to 20 miles/day), there was significant muscle-wasting, my back 'went-out' requiring a cane. before, i was 56 and strong. i gained 40 lbs. i consider age a factor. as libido hit zero, i'm looking at links to DHEA or testosterone. if you come across something, please inform.
Posted by stjames on November 26, 2003, at 1:08:48
In reply to Re: atypical neuroleptic syndrome » maxx44, posted by ace on November 24, 2003, at 22:56:14
I don't believe either of these have recieved FDA approval for any 'affective' disorder. I could be wrong.
No AP is approved for anything but psychotic disorders. It is no surprise to many people
that the newer ones are not free of the fatal
or greatly disfiguring side effects. Their use
as primary treatments in affective disorders is not an acceptable risk. As secondary treatments I feel ECT is safer but barring ECT's use and having really tried everything else they might represent
an OK risk.All psychotics on AP's (for an extended period, on older meds) get significant SE's and many have TD, which is a movement disorder that is quite disfiguring. For the newer ones, large numbers of people have not been on them for years and it takes years for TD to generally develop. The fact is, people have TD on the newer ones, also. It will take years before statements like "lower amounts of TD and other SE's" will really mean anything.
AP's have had an intresting past. Thorizine
was invented in the 50's and it emptied the
mental institutions. AP's make the insane sane.
Up to their invention inpatient care was to only way to deal with ill persons, and often the care
was quite cruel. We no longer see the conditions
of "waxy flexability" & "permanent catatonic states" which represent the late stage of some psychotic conditions. AP's do stop or slow the progression of psychotic illnesses.Also starting in the 50's, we saw a large up tic in the number of homeless. While AP's emptied the instutions no one was around to make sure everyone took their meds. We are still working on this problem as the number one cause of being homeless
is severe mental illness.If the choice is an instution where you will progress in your illness over a med that works well but has minor and in some major SE's, the risk is reasonable to take AP's.
Posted by Dinah on November 26, 2003, at 2:29:50
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 1:08:48
It's so hard, though, not to take them. When you're feeling bad and you know that their effectiveness as a "major tranquilizer" is greater than the "minor tranquilizer" klonopin, and without the side effects of sleepiness (for me anyway). It's darn hard to worry about side effects way down the road when feeling better today is a possibility.
Just an expression of frustration, because I know I probably shouldn't take the Risperdal for non-psychotic agitation and overstimulation, but just asked my pdoc to refill it anyway. :(
Posted by stjames on November 26, 2003, at 11:16:55
In reply to Re:atypical neuroleptic syndrome, posted by Dinah on November 26, 2003, at 2:29:50
I get the feeling you do not take it every day ?
Posted by maxx44 on November 26, 2003, at 12:13:14
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 1:08:48
sad to disagree, but zyprexa was approved at least 3 years ago for bipolar disorder. my daughter is cuuently on it in the orange county, cal. clinic. i want her off asap---for the reasons you correctly note. however, i feel you've either missed the 'approval' notice, or it has been wisely removed subsequent to its past approval. best wishes
Posted by maxx44 on November 26, 2003, at 12:15:22
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 11:16:55
i took it continuously 1-2mg/day for 90 days. thank you. comments?
Posted by stjames on November 26, 2003, at 12:39:31
In reply to Re:atypical neuroleptic syndrome, posted by maxx44 on November 26, 2003, at 12:15:22
> i took it continuously 1-2mg/day for 90 days. thank you. comments?
Yes, I missed the change in indications for
ZYPREXA, they are specific to acute manic episode:
"and for treatment of acute mania associated with bipolar I disorder in patients displaying a manic or mixed episode."Acute, to me, mans short term. However, TD tends to take a while to happen and NMS doesn't. But TD can happen quickly (it did in me) or the meds themselves supress TD so often it exists but is masked.
Posted by maxx44 on November 26, 2003, at 14:36:21
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 1:08:48
the fda approved zyprexa for bp-1 acute mania in 2000. search 'zyprexa approval for bipolar disorder'. no mention there of risperdal. my problems with bp1 were certainly not acute. i could make fortunes from poverty very swiftly---be stable for years and then start behaviours as flying myself and ex to hong kong and spend 30k/week shopping for every rolex, diamond, photo stuff, carpets, etc. that were clear bargains. biz-savvy crumpled, etc. i am superstitious, as many, on occassion. when i told my dr. that sometimes if a black cat crossed my path, things did seem to go awry, he called that a delusion, and such was his rational for trying zyprexa 1st. i felt something was terribly wrong and i quickly stopped after a week and then read of 'supersensitive pschycosis', where a neuroleptic may 'Produce'the very illness it was made to treat. a year later then risperdal. i informed my drs., md and phd of the intermittent fevers, loss of cognitive skills, immobility, loss of balance---they said i 'looked better' and to keep on risperdal. this was in 2001. i felt they were in error and tapered myself off over a week, only to awaken absolutely terrified of life---and adhedonic.this persisted for 2 years in spite of 300mg imipramine and 75mg librium/day. mobility or creative/cognitive functions still have not returned. i have never experienced any 'fear of life', even though also a panic disorder client. i hospitalized myself, and only then discovered i could not stoop or run. i mistakenly attributed this to lack of exercise. while hospitalized i was given trazadone for sleep and found it greatly reduced fear upon wakening. i came across the 1st mention on-line of atypical NMS in 2002. i printed the page for my md., he had never heard of it. on my last visit he had returned from a symposium and said considerable attention was devoted to ANMS. your mention of the 5ht receptors was relevant, but the lit now shows a wider range of effects. clearly my dopamine function and probably other factors currently unknown were 'hit'. we talked it over, and dextrostat 5mg/3 times/day was scripted to get me moving. adhedonia persists, but i am briskly walking 5 miles/day. i was 56 at risperdal onset. for the 2 years after cessation i spent hours sitting with my left leg crossed on a hard-bottomed chair. now i seem to have an arthritic left hip---this has not been confirmed, but the pain is chronic and now i'm 59. this is certainly not a risperdal result, other than from its production of low motor activity and my subsequent sitting pattern. my bp daughter, prior to symptoms, was a berkley regent scholar---only 24 of such/year---she does have acute delusional manic episodes, she was repeatedly raped at age 9---i feel this a factor in her severity. orange county has her on paxil and zyprexa daily. this concerns me from experience. she's 26, probably more resilient than i, but i fear her cognitive skills, which led to the highest level of academic status, may be lost. not to mention the other long-term risks you note. in 25 years of biz i was rarely litagous, the fla. 2 year statute is gone, so i am not attempting to build a case---i simply want her safe, and me recovered. over years i've seen few shrinks that see clients, non-stop daily, that return home eager to spend their free time continuing research. i feel the pace of the drug cos. marketing, and slow recognition of relatively rare reactions requires ceaseless study. thank you.
Posted by Dinah on November 26, 2003, at 15:29:34
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 11:16:55
> I get the feeling you do not take it every day ?
Nope. I only take .25 mg as needed. So I might go months taking none, then take three or four in a week.
I can't figure out whether being on 50-100 mg of Thorazine daily for a year when I was 12-13 makes it less likely I'll have problems, more likely, or makes no difference at all.
Posted by maxx44 on November 26, 2003, at 17:05:57
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 12:39:31
thank you sir. the nami site on risperdal indicates usage in depression. refractory depression may truly frustrate a dr. but no blood-work was done, and as they ignored my reported symptoms, i felt i had no choice. my dr. feels at my age and a decade of librium or xanax i have little chance of recovery from benzos. i disagree. i had energy on xanax and recently found body-builders use it, as it seems to increase DHEA. i plan a full physical for potential problems (prostate or any oncological) prior to hopefully returning to xanax---and then follow the dr. ashton withdrawal protocol. if my ongoing problems ring any DHEA bells, please advise---even if you're, as i, a 'dr. of hard-knocks'.
Posted by maxx44 on November 26, 2003, at 17:30:13
In reply to Re:atypical neuroleptic syndrome, posted by Dinah on November 26, 2003, at 2:29:50
i'm no dr., but seems currently drs. are advised to taper you down every 90 days and carefully look for any negative signs. i truly know how you feel. when panic hit me, i'd grab anything. 5 years ago i went thru hell tapering librium and seemed to have it beat. no problems for 4 months, felt better than i had in years---them wham, full withdrawal out of the blue. called PWS, protracted withdrawal syndrome---scared me back to librium---the big problem seems from dose, and term of use. i'd ask my dr. if he's aware of current 'taper-'em-down-take-a-look' regimen. truly best wishes
Posted by maxx44 on November 26, 2003, at 17:59:06
In reply to Re:atypical neuroleptic syndrome, posted by Dinah on November 26, 2003, at 15:29:34
low dose---very infrequent use? no previous NMS on thorazine? sounds like ya got it made, and how that med should be used. plenty of people i know use benzos very infrequently--no problems. congratulations.
Posted by stjames on November 26, 2003, at 18:43:02
In reply to Re:atypical neuroleptic syndrome, posted by maxx44 on November 26, 2003, at 17:59:06
> low dose---very infrequent use? no previous NMS on thorazine? sounds like ya got it made, and how that med should be used.
I agree. Personally, I would be willing to take an AP short term, if needed.
Posted by maxx44 on November 26, 2003, at 20:19:34
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 18:43:02
so good to see agreement. stress and anti-ds trigger a strong mixed-state in me. i've been fired from boards due to posts i did not want to read. i'm a past 'jumper' and it's been 6 years, but i've thought of my relatives firearms daily. i know they're just ideas. and depression. i've seriously considered ect, my drs. don't think the risk of further 'messing' is wise. their concern is based on past high achievement in writing and biz, and what they consider exraordinary 'body of knowledge'. they consider ect an absolute last resort for folks hanging by their teeth. but that's me, sometimes. there must be some solution. having looked for the lady and friend at remeron, and given zip on tcas, maois, ssris,--any thought on a remeron trial? thank you.
Posted by Dinah on November 26, 2003, at 20:21:06
In reply to Re:atypical neuroleptic syndrome, posted by stjames on November 26, 2003, at 18:43:02
This is the end of the thread.
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