Psycho-Babble Medication Thread 106049

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Allergic med reactions 4th leading killer

Posted by Phil on May 11, 2002, at 20:48:31

This is the most frightening thing I've ever read as a SE. Stevens Johnson Syndrome. Suddenly, I don't want to try any new drugs.

If you go to this site, be prepared for a shock if you click on photos. It's a hideous syndrome.

We should all, at least, be aware of this.

Jesus Christ. I think I've found a new organization to somehow support. Very sad.

http://members.aol.com/_ht_a/sjsupport/index.html?mtbrand=AOL_US

 

Re: Allergic med reactions 4th leading killer

Posted by Phil on May 11, 2002, at 20:58:34

In reply to Allergic med reactions 4th leading killer, posted by Phil on May 11, 2002, at 20:48:31

Last paragraph in the predominately displayed warning on Lamictal and rashes. Personally, it would be a cold day in hell before I took Lamictal. Although, you can get it from practically any drug, even OTC.

ALTHOUGH BENIGN RASHES ALSO OCCUR WITH LAMOTRIGINE, IT IS NOT POSSIBLE TO PREDICT RELIABLY WHICH RASHES WILL PROVE TO BE LIFE-THREATENING. ACCORDINGLY, LAMOTRIGINE SHOULD BE DISCONTINUED AT THE FIRST SIGN OF RASH, UNLESS THE RASH IS CLEARLY NOT DRUG RELATED.

DISCONTINUATION OF TREATMENT MAY NOT PREVENT A RASH FROM BECOMING LIFE-THREATENING OR PERMANENTLY DISABLING OR DISFIGURING.


 

Re: Allergic med reactions 4th leading killer

Posted by JohnX2 on May 11, 2002, at 21:15:55

In reply to Re: Allergic med reactions 4th leading killer, posted by Phil on May 11, 2002, at 20:58:34

> Last paragraph in the predominately displayed warning on Lamictal and rashes. Personally, it would be a cold day in hell before I took Lamictal. Although, you can get it from practically any drug, even OTC.
>
> ALTHOUGH BENIGN RASHES ALSO OCCUR WITH LAMOTRIGINE, IT IS NOT POSSIBLE TO PREDICT RELIABLY WHICH RASHES WILL PROVE TO BE LIFE-THREATENING. ACCORDINGLY, LAMOTRIGINE SHOULD BE DISCONTINUED AT THE FIRST SIGN OF RASH, UNLESS THE RASH IS CLEARLY NOT DRUG RELATED.
>
> DISCONTINUATION OF TREATMENT MAY NOT PREVENT A RASH FROM BECOMING LIFE-THREATENING OR PERMANENTLY DISABLING OR DISFIGURING.

Looks like a save-my-ass lawyer type disclaimer to avoid lawsuits.
Ergo, the worst case scenario is stated.

I wouldn't dismiss the rash. But I wouldn't dismiss Lamictal.
As always, a risk-reward analysis.
The odds of dying of a stevens-johnson rash are much lower than
suicide for untreated bipolar disorder.

Depakote and Lithium, 2 other good primary mood stabilizers
also have their own set of potential toxicity. Arghh.

John

 

Re: Allergic med reactions 4th leading killer JohnX2

Posted by Phil on May 11, 2002, at 21:43:33

In reply to Re: Allergic med reactions 4th leading killer, posted by JohnX2 on May 11, 2002, at 21:15:55

To me a rash is a red area usually with bumps of some sort and itches like hell.
With one dose of the wrong med, you can get on your elevator to hell.
If it were the only thing that worked, I'd take Lamictal. Some of the stuff I've been on has probably caused the syndrome. It's just one of those nightmare diseases you hope you never see.

 

Re: Allergic med reactions 4th leading killer

Posted by Chris A. on May 12, 2002, at 1:32:55

In reply to Allergic med reactions 4th leading killer, posted by Phil on May 11, 2002, at 20:48:31

Do these people have any proof for saying that "allergic med reactions are the 4th leading killer? Is that an epidemiologically sound statement? To have an allergic reaction is to have a histamine response. That is different from having drug interactions, intolerances, side effects or over doses. Yes, I took care of a patient 25 years ago with SJS, and will never forget it. The cause was unknown. It is awful, but neither do I condone scare mongering that gets bipolar patients off of our meds, since give or take 20% of us end up dead from suicide when untreated. I take Lamictal and have had minor rashes that we have "cautiously watched." There is always going to be the risk vs. benefit issue. I'm not sure I'd be alive if it weren't for Lamictal. The benefits have far out weighed the risks. I suppose if I had SJS I wouldn't be saying that. I'm not sure what the fourth leading cause of death is. It depends on the age group you're referring to. In the US the first three causes of death are: 1)Coronary heart disease, 2)Cancers, including all types, and 3) CVA(stroke). My hubby would be able to tell us what the fourth is, but he's asleep. Sorry for ranting, but the subject line struck a cord in me.

Chris A.

 

Re: Allergic med reactions 4th leading killer Phil

Posted by judy1 on May 12, 2002, at 3:26:10

In reply to Allergic med reactions 4th leading killer, posted by Phil on May 11, 2002, at 20:48:31

Those were some awful pictures, but I have to agree with Chris that the % of SJS is much lower (if you go low and slow) in bipolar patients than suicide. Personally the side-effects I've had from AP's- both typical and atypical- are much more common and frightening to me. Take care, Judy

 

Re: Chris A

Posted by Phil on May 12, 2002, at 6:28:33

In reply to Re: Allergic med reactions 4th leading killer Phil, posted by judy1 on May 12, 2002, at 3:26:10

Yeah, I should have done more research before opening my mouth. I wasn't intentionally trying to tell people to get off their meds cause the article said any med could potentially cause it.
I'm going to do some research on the 4th leading cause because I've never heard that.
Usually, I try not to blurt, but jumped the gun here. I know better than believing everything I read, most of the time.
One reason I did post this was to point out the fact that we need to take any rash seriously. Especially over the chest area. But, I could have just said that.
Sorry though, I don't work for the Enquirer. But, in this case, maybe I could submit the post.

 

Re: Allergic med reactions retraction

Posted by Phil on May 12, 2002, at 8:45:30

In reply to Re: Allergic med reactions 4th leading killer Phil, posted by judy1 on May 12, 2002, at 3:26:10

The quote below is where I found this info. I've been searching the CDC for info to back it up. There is none as far as I can tell.

I've sent this non-profit org. an email asking how they came up with their stats.

Sorry about misleading info.
--------

We started the Stevens Johnson Syndrome Foundation - Julie Foundation for Allergic Drug Reactions, a nonprofit organization to provide information that we struggled so hard to find. Adverse Drug Reactions are the 4th leading cause of death in the United States, yet less the 1% of these reactions are reported to the FDA. This is required by Federal law, therefore keeping the stigma RARE associated with SJS and TEN. We are also working on medical research into SJS/TEN.

 

Re: Email reply from SJS Foundation interesting

Posted by Phil on May 12, 2002, at 17:19:16

In reply to Re: Allergic med reactions retraction, posted by Phil on May 12, 2002, at 8:45:30

They sent a few links to back up their claim of drug related deaths.

http://jama.ama-assn.org/issues/v279n15/ffull/jed80025.html

http://www.somagardens.com/pharmadeaths.htm

Just food for thought.

 

Re: Email reply from SJS Foundation interesting Phil

Posted by Sulpicia on May 14, 2002, at 2:48:47

In reply to Re: Email reply from SJS Foundation interesting, posted by Phil on May 12, 2002, at 17:19:16

Hi Phil--
stuff like this can be scary, and hard to sort out.
since i can't comment on the U Toronto stats w/out the
article to hand, i'll stick to the JAMA article.

first read the critique of the metanalysis that generated
the numbers. second, think about the 25 year time period:
in the last several decades the pharm industry has created
some extremely potent drugs -- like cytotoxics, antivirals,
3rd and 4th generation antibiotics, and protease inhibitors.
yes, there are risks in taking these drugs, but people with cancer
AIDS, group-B strep and the like will probably prefer these risks
to death from disease.

i notice that the authors don't distinguish between voluntary and
involuntary removal. there are some effective drugs that the manufacturers
have simply pulled off the market cuz they're sick legal exposure.
last year statins got a ton of bad press from patients who developed
rhabdomyolysis, a potentially lethal muscle tissue breakdown. it turns out
that many of these patients were also prescribed gemfibrozil [sp?],
which docs were *clearly* warned not to do. there were 2 or 3 FDA MedWatch
warnings about this until finally the 2 meds stopped being prescribed together.

when ibuprofen was first released, docs tended to prescribe higher doses to elderly
patients and there were cases of liver damage.

another piece of this is *social* for want of a better word. in the mid 70's to early
80s, patient groups started to advocate for speedier access to drugs in the FDA pipeline.
the fact that effective cancer drugs were no longer a fantasy combined with the frustration
of people with HIV.

is the system perfect? no, of course not.
and i think direct advertising of prescription drugs to consumers is indefensible.

Lamictal: my daughter takes it, and would be dead if she didn't.
we've been thru *rash* scares, and even a re-start. during those tense days and weeks,
i managed to read pretty much all the professional literature, so i offer the following
to take or trash as you see fit:
start low [12.5mgs] and go slow
avoid sun exposure
avoid herbals and dietary supplements and echinacia
[cuz SJS is an allergic reaction], and try to limit your
exposure to new allergens
go to the Glaxo home page and download the professional prescribing
monograph
consider lamictal as an adjunct to polypharmacy if risk is going to keep you tense,
tho preferably not with depakote, which seems to be associated with increased risk of
SJS.
go the the Johns Hopkins dermatology site [dermnet, i *believe*] and search for
"erythema multiforme" to get good pictures of the early rash.

always have a rash checked out, and keep in mind that the most qualified person to pick
early SJS is a neurologist w/an epilepsy practice, then an experienced pdoc or dermatologist.

the risk is higher in kids, as they take relatively large doses for epilepsy, and remember that
only a tiny fraction of rashes progress to SJS, and an even tinier percent of these progress to
TENS.

what i was surprised to learn is that the most frequent cause of SJS is antibiotics, something we
seem to take at the drop of a hat.

i do sympathize with you -- some of these web sites are terrifying. and even bona fide numbers
can be shocking. i still remember the first time i read the full package insert for oral contraceptives --
yikes.

educate yourself and talk to your clinician.

be well,
S.

 

Re: Email reply from SJS Foundation interesting Sulpicia

Posted by Phil on May 14, 2002, at 6:19:14

In reply to Re: Email reply from SJS Foundation interesting Phil, posted by Sulpicia on May 14, 2002, at 2:48:47

Been educating myself for quite a while, taking Amitriptyline in 85 started my interest in these drugs. RXList and PubMed are fun. :-0
Glad to hear your daughter's okay.
I'm on a good combo right now so don't need Lamictal. The only drug I have a lot of curiosity about is Adrafinil. I'd work w/ my pdoc and see if she'll agree although with Adderall XR
I've got no complaints.
Good luck with everything. I usually don't freak out over side effects. God knows what any drug can do. Remembering when Shar was concerned with black hairy tongue while taking Nortriptyline. Who the hell named that one?

Thanks again for answering my post and giving me some history. I can't remember 5 minutes ago.

 

Lamictal, Rash, and Mood Disorder Phil

Posted by Sunnely on May 14, 2002, at 22:50:58

In reply to Allergic med reactions 4th leading killer, posted by Phil on May 11, 2002, at 20:48:31

In mood disorder trials conducted to date, the rate of serious rash, defined as requiring both drug discontinuation and hospitalization, has been 0.06% (2 of 3,153) on lamotrigine (Lamictal) and 0.09% (1 out of 1,053) on placebo. No cases of Stevens-Johnson syndrome (SJS) or toxic epidermal necrolysis (TEN) were observed. A low starting dose and gradual titration of Lamictal (Dosage Guideline below) appear to minimize the risk of serious rash.

Severe, potentially life-threatening rashes have been reported in association with the use of Lamictal. These reports, occurring in approximately one in every thousand adults (1/1000), have included Stevens-Johnson syndrome (SJS) and, rarely, toxic epidermal necrolysis (TEN).

The incidence of severe, potentially life-threatening rash in pediatric patients, however, is very much higher than that reported in adults using Lamictal; specifically, reports from clinical trials suggest that as many as 1 in 50 to 1 in 100 pediatric patients develop a potentially life-threatening rash. It bears emphasis, accordingly, that Lamictal is not approved for use in patients below the age of 16.

Other than age, there is as yet no factors identified that are known to predict the risk of occurrence or the severity of rash associated with Lamictal. There are suggestions, yet to be proven, that the risk of rash may also be increased by 1) coadministration of Lamictal with valproic acid (Depakote, Depakene), 2) exceeding the recommended initial dose of Lamictal, or 3) exceeding the recommended dose escalation for Lamictal. However, cases have been reported in the absence of these factors. Other risk factors for serious rash include 1) having tested positive for the HIV (a 100-fold increase in incidence), 2) the presence of systemic lupus erythematosus (SLE) (a 10-fold higher incidence), 3) corticosteroid treatment (a 4.4-fold increase), and 4) history of a primary relative having manifested a serious rash after Lamictal treatment (as with other anticonvulsants hypersensitivity reactions, as much as a 25% increase).

Symptoms of serious rash include fever, sore throat, malaise, facial involvement (e.g., edema, involvement of lips, mouth, or eyes), and cervical lymphadenopathy. The rash may also be generalized (confluent). Hematologic changes may include neutropenia (low white blood cell count), thrombocytopenia (low platelet count), delayed eosinophilia, and liver enzymes that may be three times the normal values. Urine analysis may be remarkable for proteinuria and presence of white blood cells. Treatment of serious rash is discontinuation of Lamictal and any concurrently administered enzyme inhibitor.

Rash occuring within 5 days of beginning Lamictal treatment is usually benign and often caused by other factors such as contact dermatitis and insect bites. Benign rash (present in 9% of adults) shows no systemic involvement, changes in complete blood count, or changes in differential cell count. Nearly all cases of life-threatening rashes associated with Lamictal have occurred within 2 to 8 weeks of treatment initiation. However, isolated cases have been reported after prolonged treatment (e.g., 6 months).

Although benign rashes also occur with Lamictal, it is not possible to predict which rashes will prove to be life-threatening. Accordingly, Lamictal should be discontinued at the first sign of rash, unless the rash is clearly not drug related. Discontinuation of treatment may not prevent a rash from becoming life-threatening or permanently disabling or disfiguring.

DOSAGE GUIDELINE FOR LAMICTAL MONOTHERAPY AND COMBINATION IN BIPOLAR DISORDER:

1) CONCURRENT MEDICATION - NONE:
Weeks 1-2 = 25 mg/day
Weeks 3-4 = 50 mg/day
Increase per 1-2 weeks = 50-100 mg/day
Maintenance Dose = 200-400 mg/day

2) CONCURRENT MEDICATION - VALPROIC ACID (DEPAKOTE, DEPAKENE):
Weeks 1-2 = 12.5 mg/day
Weeks 3-4 = 25 mg/day
Increase per 1-2 weeks = 25-50 mg/day
Maintenance Dose = 100-200 mg/day

3) CONCURRENT MEDICATION - CARBAMAZEPINE (TEGRETOL)
Weeks 1-2 = 50 mg/day
Weeks 3-4 = 100 mg/day
Increase per 1-2 weeks = 100 mg/day
Maintenance Dose = 300-500 mg/day


> This is the most frightening thing I've ever read as a SE. Stevens Johnson Syndrome. Suddenly, I don't want to try any new drugs.
>
> If you go to this site, be prepared for a shock if you click on photos. It's a hideous syndrome.
>
> We should all, at least, be aware of this.
>
> Jesus Christ. I think I've found a new organization to somehow support. Very sad.
>
>
>
> http://members.aol.com/_ht_a/sjsupport/index.html?mtbrand=AOL_US

 

Re: Thanks, Sunnely (nm)

Posted by Phil on May 15, 2002, at 6:15:51

In reply to Lamictal, Rash, and Mood Disorder Phil, posted by Sunnely on May 14, 2002, at 22:50:58

 

Re: Chris A

Posted by ELENI4 on July 9, 2003, at 19:13:42

In reply to Re: Chris A, posted by Phil on May 12, 2002, at 6:28:33

I don't think you jumped the gun at all. From what I can tell, SJS or TENS can be caused my any AE as well as other drugs such as Sulfa drugs...but not all drugs, and the fatality rates are 15-20 percent for the former and like 25-30 percent for the latter though I'm probably understating. And regardless of whether or not it's fatal, I'm currently not willing to risk getting a death rash or having my skin fall off. That's a little more than I can handle at the moment, and something no one should take lightly. Also no one pressed abandoning medication. It's always wise to be educated about the risks associated with any medication. I'm the first to admit that I'm terrified by the side effects caused by medications used to treat bipolar disorder, but it's a risk vs benefits assessment everyone with the disorder has to make. Just because someone threw out suicide statistics doesn't mean one should cling to them any more than the ones concerning SJS or TENS. It's a personal choice, a personal assessment. I'm a believer in better living through chemistry (have tried Wellubutrin, Prozac, Effexor, Zoloft, Lithium, Ritalin, and Adderall, though only Lithium, Prozac and Effexor XR have worked...not at the same time) as opposed to therapy, but SJS and TENS still scare me, and though it's rare, would you want it happening to you? Wouldn't you at least want to know it could? I kind of lost my steam, but I support whoever originally posted the info about SJS and TENS.

> Yeah, I should have done more research before opening my mouth. I wasn't intentionally trying to tell people to get off their meds cause the article said any med could potentially cause it.
> I'm going to do some research on the 4th leading cause because I've never heard that.
> Usually, I try not to blurt, but jumped the gun here. I know better than believing everything I read, most of the time.
> One reason I did post this was to point out the fact that we need to take any rash seriously. Especially over the chest area. But, I could have just said that.
> Sorry though, I don't work for the Enquirer. But, in this case, maybe I could submit the post.

 

Re: Lamictal, Rash, and Mood Disorder Sunnely

Posted by maggie'srx on August 1, 2003, at 10:16:27

In reply to Lamictal, Rash, and Mood Disorder Phil, posted by Sunnely on May 14, 2002, at 22:50:58

I have had or am having this drug reaction. It seems I am finding out about it in retrospect. I saw my dermatologist yesterday and he has given me more information than any one else, but i still don't know what's going on. I was hospitilized for PTSD in late Septemeber and the insurace company insisted that one of my medications be changed in order for me to stay in hospital any where near as long as was needed. Lamictal was substituted for another med because it had so few side effects. after three pills some skin came off when i scratched my leg and i had the worst sore throat i had ever had. I stopped taking the pills then. I never did get many skin lesions but the inside of me was another story. It was a long slow recovery and i finally began to eat solid foods again in february. In April suddenly a place on my leg where i had lost a bit of skin started to enlarge and got bigger and bigger. this went on for a month. I went to a doctor but he thought it was excema. After looking at my meds list, he was afraid of me any way...i must be nuts, i take antidepressants. I told him about the lamictal but he never gave it any thought. Finally a big thick piece of skin came off and the place healed up leaving a scar. A couple of weeks later another place did the same thing. that was the middle of june. Is this going to keep on happening? Has Anyone else ever experienced this? What kind of damage has happed to the inside of me? At the time I was the first person the hospital had encountered with the drug reaction so other that stopping the medication they didn't know what to do either. I would like to learn more.


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