Re: new poll?

[Guest guest]

Dear Hope,

There is always Hope!

Look at the left side of this message and find a yellow menu box.

Click on " Polls " . Then read the list of Poll questions. The second

question should be the poll regarding those who just took the exam.

The following is a cut and paste of what you will find. Then click on

the question itself and it will allow you to vote on it. You may vote

on any phrase that applies to you. To date there are 25 replies!!!! "

" " " " Open Polls

Poll question Votes Polling ends Vote Conclude Edit

Delete

First Poll was accidently closed. This is to continue on the first

poll to give others a gcahnce to voice their opinion. Do you think

that states should allow technicians to take LIVE oral/verbal orders

over the phone?

Created by rxjm2002 on 10/20/2002 18 Vote Conclude Edit Delete

If you took the November 2002 PTCB exam, AND if you studied using

this study Group(Jeanetta's PTCB Study Group), please give us your

results.

Created by rxjm2002 on 12/26/2002 25 Vote Conclude Edit Delete

Dear All I am conducting survey of the population of the current 170

plus members as of 11-4-02. YOU ARE: (choose the answer which best

describes you:

Created by rxjm2002 on 11/4/2002 27 Vote Conclude Edit

Delete " " " "

The example of what you will see is in " quotations marks " . Click on

the question begining with the words: " If you took the November 2002

PTCB Exam " "

Let me know if you still have any problems.

Love ya

Jeanetta CPhT

Founder/Owner

> Jeanetta,

> I went to vote for the new poll but could not find the link

under

> polls. Could you please point me in the right direction.

[Guest guest]

With regard to psychoneuroimmunology, my rheumatologist is a big

believer...she is convinced that all disease is caused by the secretion of

adrenaline and cortisol triggered by " flight or fight " response. Her belief

(and that of others in the field) is that fight or flight is triggered in a

nanosecond by both psychological and physical stressors. She gave me a

reading list when I started seeing her; all of the books deal with the

relationship between the frontal cortex (where emotion comes from) and

disease. So far, I have only read one of the books called " Why Zebras Don't

Get Ulcers " ...although only one of the chapters is about autoimmune disease,

the whole book really helped me understand the role of stress in PA.

I've been dealing with a pretty severe flare, and when I went to see her, she

asked if anything stressful was going on...since my work and home life are

pretty stable at the moment, she moved on to the physical and is running a

bunch of bloodwork under the theory that its probably something like a B12 or

iron or thyroid deficiency that has triggered this flare...

Anyway, the one book is interesting, if anyone is interested, I'll dig up the

ones I haven't read yet and post the titles...

[Guest guest]

I had my first major " flare " of PA about 3 months after my husband had recovered

from a year of fighting throat cancer and had recovered his strength...the

previus year was decidedly stressful. I have taken ativan for many years, never

increasing the dosage beyond 2 mgs. at night...I have taken ambien, but there

was no association with PA. Thre may be some association, but certainly not all

can be linked to pschopathological events. Good luck on your thesis.

zen124c41 <zen124c41@...> wrote:To the network

administrator/Webmaster/Hosts

I tried to follow the instructions to create a new poll, but

apparently wasn't smart enough to figure out how--so I'm addressing

this address in hope of help.

(When I was in grad school in psych, the field of

psychoneuroimmumology was just getting started. Some courses I took

provoked me to question the involvement of psychological/psychiatric

trauma in certain pathologies in general, and PA in particular.)

The topic in general would be: Have you ever been told, heard or

suspected that psychological events may precipitate the onset of PA,

or the onset of a PA flare?

Secondarily, have you ever received a prescription for apsychoactive

medication designed in whole or part to regulate mood and or anxiety?

Have any of these medications had a positive efect on the PA,

particularly the P component?

Checkoff boxes would perhaps include:

Experienced first onset of PA within 6 months of major psychological

trauma (move, divorce, job loss, death of close relative, serious

accident, etc.)?

Within 3 mos?

Within 1 mo?

Experienced major flare within 6 mos of major psychological trauma?

Within 3 mos?

Within 1 mo?

Have you ever been prescribed a minor tranquilizer (Valium, Librium,

Xanax, Ativan, Miltown, etc.?

Ever been prescribed a major tranquilizer (any phenothiazine--

Mellaril, Thorazine, Stelazine; Haloperidol, etc.?

Ever been prescribed a hypnotic (sleeping pill--Ambien, Dalmane,

Quaalude, Sopor, Chloral Hydrate, Sodium Seconal) etc.?

Have any of these psychoactive medications, as a secondary effect,

produced amelioration of the PA?

Amelioration of the P component?

Might be interesting...

_______________________________________________________

Ed. Note: Hi zen124c41. The global forum settings apparently only allow

moderators to add and delete items (including polls) to/from the forum

databases, so you couldn't have done it no matter how smart you are or how hard

you tried. I assume has things set up that way in order to prevent

chaos in the database and other files, and to prevent us from exceeding our

meager storage limit of 10 MB.

A couple of polls related to the question you want to address have already been

posted to the forum. See:

(antidepressant drugs)

/surveys?id=1014910

(Stress)

/surveys?id=279860

I noticed that you only joined the group a couple of days ago, but if you go

back through the archives you'll find that stress is a well known trigger for PA

(and perhaps Ps) flare-ups as well. This is supported by the poll on stress

mentioned above. In fact, my own two last major flares occurred during periods

of great stress at work. I believe the primary reason doctors prescribe

anti-depressants for most of us is to help alleviate stress.

If you still wish to post a poll, please take a look at some of the existing

polls at /polls to get an idea

of how questions and answers must be framed within the context of 's

polling facility. For example, it's not possible to construct a poll that

requires textual input from members. All poll questions must be multiple choice,

and you can either allow only one choice or multiple choices per poll. Only one

question can be asked per poll. For help on creating polls, please see:

http://help./help/us/groups/polls

Once you have devised a question and the multiple choice answers for your

poll(s), please forward them to the forum moderators at

-owner and one of us will most likely be happy

to post your poll. I would suggest you list both the name brand and generic

names of the drugs you're interested in, because I haven't even heard of half

the drugs you mentioned at all. You may want to include anti-depressants in your

list as well as the high-powered " Zombie " producing drugs you mentioned

(Thorazine, Quaalude, etc), because I would venture to say that most of us are

on some sort of anti-depressant, but very few are on high powered psychoactive

medications. Most of us have jobs, and some of the drugs you mention would

likely make it very difficult if not impossible to remain employed, if I

understand their effects correctly. Finally, keep in mind that some drugs are

prescribed " off-label " from their intended use - that is to say for example that

I've tried various sleeping pills (Ambien, Sonata, Halcion, and a couple of

others whose names I've forgotten), but the only thing I've found that works

well to help me sleep is a drug developed as an anti-convulsant called Klonopin

(Clonazepam). Some people like Zanaflex (Tizanidine HCl) for sleep, even though

it was developed to help control spasticity.

-- Ron

[Guest guest]

Thank you for your lengthy and informative reponse to my clumsy attempt to

recruit interest in my Poll subject.

I know (we know) it's well-established that there is a relationship between

psychosomatic, endogenous and exogenous stressors and PA flares. My interest

is this: I have discussed with some interested physicians that notion that

the growing field of psychoneuroimmunology may provide a framework for

studying and hopefully understanding if--and if, how--psychiatric traumas

might potentiate latent endogenous precursors, precipitating the (first)

onset of a " pathological biochemical cascade " , leading to (first onset)

full-blown PA (or other autoimmune disorder). As tenuous as these

relationships may be, I " m wondering whether we can identify the latencies and

imposed events & conditions that coalesce to produce PA (and the others).

These " coalescences " , or disease onset events, at least in some cases, come

on quickly, with rapid deterioration in the patient--(outwardly) perfectly

healthy today, trauma occurs tomorrow, patient is in the hospital the day

after, and in a wheel chair within 4 days. (I am describing my own first

onset of PA.) If we understood this mechanism (or set of mechansms) more

fully, perhaps some day we could think in terms of reversing the process

rapidly, and preventing the physical changes which eventually obviate any

real purpose to reversing the original trauma, or rendering it without power,

years down the line and after too much damage is done.

Wheeew. Well that's where I was headed, and I'd be grateful to those of you

with experience and knowledge more vast that mine to see whether you find any

" scientific merit " to my questions, whether they pique similar thoughts and

queries amongst moderators in this group, and whether together--if it's of

interest to anyone but me--there are those of us that might want to study the

issue with me, or take it over and let me just stick my 2 cents in here and

there if it's warranted. I'm not trying to move in and take over, but I guess

I've got a little bit of the new kid syndome...This is the first time in

almost 40 years of having PA that I've had anyone who understood it the way

we do, other than mostly busy docs. Please forgive the overweaning

enthusiasm. I have been fortunate in that the Rheumatologist I've been with

the longest was a believer in real patient education, including getting me

access in the med school library, so I've been studying PA for 40 years, plus

undergrad & grad psychology with a specialty in psychopharmacology, a tour at

The Menninger Foundation in Topeka, and work at the US Dept of HHS on the

NHANES I and NHANES II longitudinal projects. Plus a passion to understand

psychoneuroimmunology, which was pretty rudimentary when I was in grad

school. Are there any group members I might get with to see if they would

have thoughts on my area of interest, and might want to discuss it further,

or take it and run with it themselves? Thanks for your guidance!

_______________________________________________________________

Ed. Note: Normally I would reply to your question in a separate message rather

than in a moderator's note, but since you specifically mentioned moderators in

your message, I suppose I may as well add my own personal reply here - Oh, and

don't worry about your " overweaning enthusiasm " - we will all beat it down into

resigned fatalism in short order (Just Kidding of course ;-).

Yes, prevention of stressors and psychiatric trauma such as loss of a loved one,

loss of a job, etc., would in my opinion very likely prevent not only most first

onset PA flare-ups, but many subsequent flares as well - regardless of the means

used to achieve it (ie; whether by psychiatric counseling or temporarily masking

it with drugs). It's my impression that psychiatric counseling can be a long and

drawn-out process however (not to mention expensive!), and I'm doubtful it would

be effective in ameliorating an emotional shock quickly enough to prevent the

biochemical responses precipitating PA and other autoimmune diseases from

kicking in. Drugs might be effective as a short term solution, but doctors are

extremely reluctant to prescribe drugs that are on the U.S. Government's Drug

Enforcement Administration schedules of controlled substances. For many of us,

it's difficult enough to get adequate pain medication, much less high-powered

psychotropic drugs such as those you mentioned in one of your previous posts

(Thorazine, Seconal, Quaalude, etc) - which ironically enough, might obviate the

need for the pain medication later on. Have you ever tried to get something as

innocuous as a prescription for a few Valium from a doctor? I think your goals

are worthy, and should definitely be pursued since it's far better to prevent a

disease than it is to treat a disease after the fact - especially one that is

incurable and very expensive to treat.

This forum could be useful as a means to help collect some of the data you're

looking for, but what you'll find here is only anecdotal, and the polls

are far from scientific since it's trivially easy to vote more than once. Also,

the polling format is much more restrictive than a written form would be, and

the response rate varies greatly. It might be more effective to send out a poll

via email so that you would have more flexibility in constructing the poll than

is allowed with the standard polling form. With 's permission, we

could send it out as a " Special Notice " so that all members get it even if their

preferences are set to " No Email. " I'm not sure what response rate you might

expect, because people responding by email have no anonymity and the questions

you would probably need to ask would likely be of a highly personal nature.

Nevertheless, I think anything that might help prevent our disease is

commendable and worthwhile.

One last suggestion - have you contacted the National Psoriasis Foundation?

Although their primary concern is Psoriasis, they also have statistics on PA, as

well as access to a much larger membership database than this forum. They might

be willing to include a questionnaire as part of their NPF Bulletin (now called

" NPF Advance " ). You may have already mentioned this, but may I ask if your

interest is purely personal or are you affiliated with some university or other

organization?

-- Ron

[Guest guest]

I can tell you that I had my first major PA flare (although at the time I didn't

know what it was) about 6 months after the painful breakup of a long

relationship, the second flare 6 months after my mom died, and the current one

started about 6 months after my dad died. Coincidence?

e van Gils

[Guest guest]

Really don't think it's coincidence............many of the PA people I talk

to report similar histories. Me included. The worst ever was my first: Age

16, my mother had died 6 months prior, my father had remarried, then had

terminal cancer, and died in April, his new wife (to whom he'd willed

everything and she kept it, including my car) and I got into some pretty good

fights (me to her: $200,000 for 6 months work, not bad, " ); I was shipped off

to my fiance's mother's home in another state by the lawyer, and, stepping

down the plane ramp, my right ankle and foot began to flare.

A week later I was in a wheel chair in a hospital in Muncie, Indiana. Six

months later, I was working hard to not need crutches any more. Talk about

sudden onset.

[Guest guest]

In a message dated 3/11/2003 10:01:51 PM Eastern Standard Time,

rachelviognier@... writes:

> Anyway, the one book is interesting, if anyone is interested, I'll dig up

> the

> ones I haven't read yet and post the titles...

Sounds interesting. I would like have the name of the books.

Thanks,

Janet

[Guest guest]

my P started just after moving 3 states away with a man to a location that

did not have the educational program I had a full ride scholarship here for,

living with 6 other people (his family) that were difficult to get along

with, my school paperwork getting lost so I didn't get admitted and had to

wait another year to start. That was my first big flare. My PA first

started right after the birth of my son, started out mild and now is

extremely painful. I see a direct correlation between life events and P and

PA flares

[Guest guest]

,

I think you will find stress ties in strongly to most autoimmune diseases,

including PA... BUT I honestly believe you have to have the gene lying

dormant waiting for a reason to activate, and I believe once something

happens to activate the dormant gene (which I would bet is stress 75% of the

time) it is very hard if not impossible to make the gene dormant again. I

have heard Enbrel has done this for some people, but it's too early to tell

how long the biologics will last when it comes to full remissions. I think

most of us can think of turmoil that was happening in our lives when the PA

activated. Yet, you see people go through things 10 times worse than what you

were going through at that time, who have no lasting health problems from

their traumatic time. It's like weight... I can eat a Snickers bar and gain

weight, but my best friend can eat 20 and lose. We are different... she

doesn't pay for eating poorly the way I do. Stress is not the CAUSE of the

PA, but simply a trigger. I think all of the studies in the world will simply

show that stress activates all kinds of dormant genes causing different

diseases, BUT they don't know what to do with that because we can't just do

away with stress in our lives completely. Kind of scary, because none of us

really know what kind of dormant genes we have... what kind of diseases we

could actually get... and would you really want to know? They do have the

test for it these days, but I figure knowing will only cause me more stress,

and stress will cause things that might have been dormant all of my life to

activate. I am sure if I knew what I COULD get, I would stress about it all

of the time and eventually get it.

Anyway, I think you will find that stress is a trigger for so many bad

things, but it's not something that can be completely avoided. Stress

triggered the PA in me, but there are people that live the hardest life

imagineable, and never have a single health problem. You gotta have it to get

it! I think if you are lucky enough to limit the stress the PA is easier to

get into remission, but I don't think it will ever be like " before " when you

didn't even know you had the PA gene that could be activated. It's like

cancer.... even when it's in remission, it's usually only a matter of time

before it acts up again. Man, am I being fun tonight! Everyone smile now!

[Ed. Note: Dormant genes? Perhaps that explains the fangs and leathery wings

I've sprouted, as well as my aversion to sunlight and desire to fly during a

full moon and eat raw meat and mosquitoes! LOL ;-) Actually I agree with you

- just couldn't help poking a little fun. Ron]

In a message dated 3/12/03 1:05:58 PM Eastern Standard Time,

zen124c41@... writes:

> A week later I was in a wheel chair in a hospital in Muncie, Indiana. Six

> months later, I was working hard to not need crutches any more. Talk about

> sudden onset.

>

>

[Guest guest]

Hi Janet,

The books about psychoneuroimmunology are:

-Why Zebras Don't Get Ulcers (lent the book to someone and can't remember the

author; its out of print but you can get used copies on Amazon.com

-Molecules of Emotion: The Science Behind Mind-Body Medicine by Candace

Pert...I started this book but its a little over my head I think

-The Feeling of What Happens: Body and Emotion in the Making of

Consciousness by Domasio...haven't ready any of this yet

-The Link Between Religion and Health: Psychoneuroimmunology and the Faith

Factor by Harold Koenig and Harvey Jay Cohen....haven't read any of this yet

-Why God Won't Go Away: Brain Science and the Biology of Belief by Newberg,

D'Aquill and Rause

Happy Reading!

[Guest guest]

Ron,

It's a personal interest. I do correspond with a handful of people who have

either university and/or governmental (U.S.) affiliations. (I spent

academic-years summers as a researcher for the U.S. Dept. of Health & Human

Services.) Also, I have a two friends who are medical doctors, one

specializing in Rheumatology, but I do not currently have any professional or

academic affiliations.

My academic training is in counseling psychology, and I was fortunate enough

to spend two years post-grad in training and on staff at the Menninger

Foundation, Gage campus Children's Hospital in Topeka, KS, which I like (in

my more pretentious moments) to think of, as in relation to

psychiatry/psychology, as the Mayo Clinics are to more " invasive " medical

disciplines.

ly, if PA had been kinder to me, and more timely in its severe

flares--and I hadn't lost my parents (and been responsible for siblings) at

age 16--I'd have had a somewhat different curriculum vitae, and perhaps be

pursuing research in psychoneuroimmunology.

You obviously know what you're talking about--may I ask, are you in the

medical profession?

Thank you for your (e)-letter.

[Guest guest]

Of course it's of interest to everyone who has PA and everyone who loves them.

I hope you can find and document enough to success research into better

treatment and even cures. Go for it.

zen124c41@... wrote:Thank you for your lengthy and informative reponse to

my clumsy attempt to

recruit interest in my Poll subject.

[Guest guest]

In a message dated 3/13/2003 5:40:47 AM Eastern Standard Time,

rachelviognier@... writes:

> Happy Reading!

>

>

Thanks for all your information . I also wanted to ask anyone on

Enbrel a question. It seems my throat is a bit scrathy for the last few days

and now I woke up with a cold sore on my lip. I have not had one of these in

years. Can it be that my immune system is becoming lower after 4 injections?

I would also like to know what other things symptoms you have had due to

Enbrel and it lowering the immune system.

Thanks,

Janet

[Guest guest]

In a message dated 3/13/03 4:38:29 AM Central Standard Time,

pookiegut@... writes:

> I am sure if I knew what I COULD get, I would stress about it all

> of the time and eventually get it.

I heard a quote recently on an episode of Jeopardy that I thought was

interesting but was waiting for the right moment to share it. This probably

isnt an exact quote but the idea is the same " The secret to happiness is good

health and poor memory. " I made a point to remember who originally said that

but the poor memory kicked in. ha ha Orin

[Guest guest]

Francesca Skelton wrote:

We now have over 800 members, an all time high. However a very few of the

800 participate in our discussions. I'd like to open a new poll with the

possibility of finding out why. The poll might look like this:

WHAT IS THE REASON YOU DON'T PARTICIPATE IN THE DISCUSSIONS OF THE GROUP?

CHOICES:

1) too busy

2) don't know how to post

3) nothing to add to discussion

this fits me as I post seldom, just trying to lose weight and then consider

a CRON life after my surgery.

4) too shy

5) afraid of being humiliated/corrected

6) not well informed about CRON

7) never read the literature

not me I am relatively well read in the area of diet, not that I have had

much luck in applying it personally!

Positive Dennis

8) other

or whatever other answers people think we should add to the poll.

PLEASE DON'T POST WITH ANSWERS TO THE QUESTION JUST YET. THAT WILL TAKE

PLACE WHEN WE OPEN THE POLL. AT THAT TIME I'LL POST INSTRUCTIONS AS TO

HOW

TO VOTE (which is very simple).

At this time, please either post or contact me directly at:

fskelton@... with any other possible ways to make this poll better

than what I have suggested above. Then we'll put it into the polling

feature.