Re: Re: Question on Pain 'Spots'(Attn: Orin)

October 30, 2003

In all my studies on psoriasis I havent found a compilation of related data.

The archives of this group may very well be the most comprehensive source in

existence, although the data is scattered among thousands of postings. Maybe

we should make efforts to expand our database.

As to being generally mild one thing to consider is most of the people who

seek information and support from an online group are going to be toward the

more severe end. This group is about 1600 of an estimated about 500,000

arthritic psoriatics, just counting the US. So that makes us a fairly small

representative sample somewhere around 3/1000.

On the Rhuematologist conference, perhaps a selection of the more mainstream

polling questions from this message group would be helpful? If you wanted to

influence the content of their meeting I would think youd do best to send info

directly to those who will be giving the lectures. I dont know how much

interest they might have in anecdotal evidence even though it is the word of on

average maybe 200 of our members. When is this conference scheduled for? If

it's less than 6 months I would imagine that they already have their topic laid

out but maybe if you could befriend one of the speakers they might mention our

group as reference?

Youre on the right track with writing them. And as the old saying goes there

is strength in numbers. A statement with 1600 signatures carries a lot more

weight than one with an individual signature. Sure it may not be scientic

evidence but its hard to ignore a statement with mass concurrance from people

who

are living proof. You can imagine rhuematologists are busy people as evidenced

by the long waiting period for initial or unscheduled emergency visits so

getting a response from them may not be expected but it doesnt hurt to try.

I would like to see more proactive advocacy by our members such as

challenging apparently inaccurate information like the suggestion that ibuprofen

can

worsen psoriasis that I am currently trying to find evidence for one way or the

other. Havent found anything besides copies of the same sentence. Cant

identify the person who originally wrote it or the observation that led to the

claim

so I am challenging the websites that have published that sentence to offer

proof, even if it is anecdotal, or else remove the sentence from there

literature. I will be submitting a poll question on the issue to the group. Orin

[EdNote: I agree with all Orin says, and am willing to help get the

Rheumatologists' attention...although I suspect Orin is on the right track in

thinking their agenda for this coming conference is set. Perhaps we could ask

for their ear at the conference after the coming one, and in the interim, put

something together for them?

D.]

In a message dated 10/30/03 12:12:17 AM Central Standard Time, mlw402@...

writes:

> Hi Orin,

>

> I wonder if anyone has ever even compiled data? I also read about

> small joints and read over and over that PA is generally mild (???)

>

> I think our group could be a big help to the Rheumatologists

> currently meeting to set standards for diagnosis and treatment. Do

> you have any ideas about this?? I have written them about the

> swelling issue but I have no idea if they are looking for patient

> input.

>

> Marti---

>

October 31, 2003

I would like to see more proactive advocacy by our members such as

challenging apparently inaccurate information like the suggestion that

ibuprofen can

worsen psoriasis

Orin...Before I got diagnosed with PA and got put on a different NSAID, I

took anywhere from 1600-2400 mg a day of Ibuprofen for about 2 years. I didn't

know at the time that the patches on my scalp and the problems with my nails

were Psoriasis but now, looking back, I can tell you that the Ibuprofen did NOT

make it worse. I still to this day, thank God, only have mild Psoriasis. Hope

this info helps you with your search for evidence on this subject. ~Cyndi

October 31, 2003

In a message dated 10/31/03 11:23:12 PM Central Standard Time, mlw402@...

writes:

> I wonder if the other 4000 people out

> there really do have milder cases than us?

I hope I'm not gonna get into it again. I had a math problem the last time

this subject came up but in the US,

the number of people with psoriasis is estimated at about 2% = 5.6 million

of those an estimated 20% of psoriatics experience arthritis.

Going with the 280 million Americans in total yeilds about 1.1 million PA'ers

of which 1607 have found their way to this group (this is skewed because we

have a lot of members from different countries but this will still give an idea

of the numbers).

So the " others " should be somewhere around 1,098,400 I added this to the

member database under Statistics. I intended to add more info to this

database but Im having a hard time figuring out how add to/edit this database.

Anyone

experienced with data entry? Help! Orin

November 1, 2003

In a message dated 10/31/2003 11:22:54 PM Central Standard Time,

mlw402@... writes:

> Both Orin and have scientific minds which I do not. Our polls

> might be interesting to the Rheums or a special poll or even just a

> statement of support for their mission which apparently is much

> needed in the medical world.

>

> I am open and willing to help. What does everyone think?

>

> Marti

>

Sounds like a great idea! Count me in on any help I can provide! ~Cyndi

November 2, 2003

Orin, I'm guessing your database is not something like SPSS. Editing in that is

fairly easy. Sylvia

orinok@... wrote:In a message dated 10/31/03 11:23:12 PM Central Standard

Time, mlw402@...

writes:

> I wonder if the other 4000 people out

> there really do have milder cases than us?

I hope I'm not gonna get into it again. I had a math problem the last time

this subject came up but in the US,

the number of people with psoriasis is estimated at about 2% = 5.6 million

of those an estimated 20% of psoriatics experience arthritis.

Going with the 280 million Americans in total yeilds about 1.1 million PA'ers

of which 1607 have found their way to this group (this is skewed because we

have a lot of members from different countries but this will still give an idea

of the numbers).

So the " others " should be somewhere around 1,098,400 I added this to the

member database under Statistics. I intended to add more info to this

database but Im having a hard time figuring out how add to/edit this database.

Anyone

experienced with data entry? Help! Orin

November 2, 2003

Neither of my two " family " doc.s refer to PA as " mild " , but rather as

exceptionally painful; rheumy agrees.

In the data base would we start with onset of p and/or pa...questions about

traumatic events in our lives just before major onset [we could assign number

1-9 for subheadings to better identify events].. Just some ideas....I have

worked on developing educational evaluations in my working past...it would just

take some time bouncing ideas about and getting whoever is working on it up to

speed. An evaluation tool like SPSS would make it easier to quantify and to

determine some relationships. Sylvia

orinok@... wrote: