New to the List

January 22, 2000

<< Afraid if I don't, I won't be able to. Just as I start finding how much

I enjoy being an active person, this stuff makes it harder to be one. I

bike ride, scuba dive, roller blade, etc. and REALLY don't want to give it

up because of some stupid

disease. Anyone else out there who's finding ways to stay active without

overdoing it? >>

Hey Sylvia,

I'm learning how to be more active than I used to be -- still working on the

not overdoing it part. I also have fibromyalgia, which basically requires

daily exercise *or else*, from what I've read. So I swim, take PT 3 times a

week and they work me hard, and ride various forms of exercise bikes or walk

on the track at my health club regularly. I try to be at the club or at PT

at least 6 days a week. I was diagnosed with PA in April 99, and it hit me

like gangbusters so I started MTX in May. I wouldn't be doing much of this

exercise without taking MTX, that's for sure. I love all the exercise

though; my energy level is much improved and I also think it helps me

emotionally manage all my chronic conditions more effectively.

Patty

May 13, 2001

Hi - Welcome to the group. Please do whatever you can to get that

referral to a rheumatologist. I don't think it's a good idea for anyone to

try to self-diagnose, although I've probably been guilty myself. I also

think that if you do have PA, it's important to get treated for it as soon as

possible and aggressively as possible.

I'm sure I speak for the whole group when I say feel free to sit and read the

email as much as you like, but sometimes posting can really help too. This

is a great place to rant when the frustration has you tearing your hair out!!

Take care and good luck,

May 13, 2001

HEY KIM

JUST THOUGHT I WOULD SAY WELCOME.

I THINK YOU WILL FIND OUT QUITE A BIT OF INFORMATION HERE, GLAD YOU FOUND US.

HOPE ALL GOES WELL WITH YOUR NEW DOCTOR.

CHICAGOLAND SHARON

May 13, 2001

Testimony2Christ@... wrote:

>

>That with the fact that I've had psoraisis for so

> many years is why my childhood doctor, Dr. Weinstein out of UCI, the

> psoriasis specialist I saw, believes I may have PA. He's given me the name of

> a doctor in my area who specializes in PA and I hope that my primary will

> refer me to her.

Hi ,

I saw Dr. Weinstein for my P a few times while I lived in the So. Calif.

area; I was going thru a really bad P flare at the time -- which I am

100% certain was due to the stress and emotional upheaval I went thru in

moving to Calif. from NH -- and he had me spend a week at UCI Medical

Center so I could have the (in)famous coal tar and UVB treatment. :-)

Which worked, by the way.

Anyway I later saw a rheum. in Anaheim; name was Dore, I believe. I

liked her a whole lot but then my PA (which I didn't know I had, at the

time; thought I had tendonitis) went away and I didn't need to go back;

then we moved and that was that ...

Just wanted to say Hi here and hope you get a good rheumy!

--Louise

May 14, 2001

Hi !!

Welcome! Can you please tell me what the name of the

med was that you took as a child to help your Psoriasis?

Did it go away that well due to meds? Hope that you

have a better and pain free day.

Pat

May 14, 2001

Louise-

As a child I went to Dr. Weinstein 2-3 times a week and had the full body

light treatments in " the box " . He had me on some big green pills that made my

skin absorb the UVB light more effectively. Hey, I was a kid, they were just

the big green pills to me LOL. I remember seeing SOOO many doctors before I

got to him. In 6th grade they had me doing the saran (sp?) wrap and ointment

thing. It was awful because our 6th grade class when on a week long camping

trip at a summer camp and I had to continue the treatments while there. I'll

never forget the names the other children called me, I cried to sleep every

night. And what made it worse is the camp nurse would put the ointment and

saran wrap on me in the living room quarters in front of all the other girls!

I don't think I was with Dr. Weinstein at that time though. He is a great

doctor for the P, definately my favorite as a child.

May 15, 2001

Hi ,

...I'm trying to inform myself about this disorder before going to the

doctors

so that I can have an understanding of what they are referring to when they

discuss it with me, whether I have PA or not...

I think you are definitely on the right track. What we learn about PA is

not particularly pleasant and is sometimes downright discouraging. But an

attitude of learning as much as you can is going to carry you a long way.

Many people think that their doctors are the what makes the difference in

what happens or not in our prognosis. The truth is that WE are the ones who

makes the difference.

...I hope no one minds if I kinda sit back and read e-mails as they come in

just

so that I may be better informed...

I still do that sometimes. This group is both educational and supportive.

Welcome!

.

May 15, 2001

Testimony2Christ@... wrote:

>

>In 6th grade they had me doing the saran (sp?) wrap and ointment

> thing. It was awful because our 6th grade class when on a week long camping

> trip at a summer camp and I had to continue the treatments while there. I'll

> never forget the names the other children called me, I cried to sleep every

> night. And what made it worse is the camp nurse would put the ointment and

> saran wrap on me in the living room quarters in front of all the other girls!

I truly hope you never experience any more of that kind of cruelty and

humiliation . There's a very good chance today, though, that

those other girls have grown up to be a little smarter and (belatedly) a

*lot* more compassionate for having witnessed what you went through.

Your story brings back (uncomfortable) memories. That P sure does get

attention, doesn't it. Even though I have only ever had a couple bad

flares (while one of my sisters was covered with it, head to toe, at the

age of 4 or 5) and have mostly just had it on lower legs and elbows, it

still has its emotional memories for me too. Before I learned how to

camouflage it, I used to have one patch -- but oh what a patch it was --

showing through my nylons and I would catch people looking at it at some

of the most inopportune times. Even after the patch was gone, it left a

discolored area, and people stared at that too. For crying out loud,

just a year or so ago an acquaintance who really should know better at

his advanced age -- 70 -- " kidded " me about having rust patches!

All the best to you,

--Louise

August 8, 2001

In a message dated 08/07/2001 11:41:15 AM Eastern Daylight Time,

celtichealing@... writes:

<< I am going to a

rheumatologist/immunologist on the 31st of this month >>

Good first step Mel. I wish you luck that the one you are going to is a good

one. I lucked out. Many here have had bad experiences with the first rheumy

they tried. If you don't like this one, get another, until you find one who

will work with you and your desires (having more kids, etc.)

Welcome - and best of luck,

August 9, 2001

Thanks! I hope I like him as well. I know I'm not taking any crap from any

of the docs and if I don't like him, onward ho to the next one!!!! I'm glad

this list is here for support, at least I know there are others in the same

situation that I am.

Mel

>From: TADEL630@...

>Reply-

>

>Subject: Re: [ ] New to the list

>Date: Wed, 8 Aug 2001 13:15:50 EDT

>

>In a message dated 08/07/2001 11:41:15 AM Eastern Daylight Time,

>celtichealing@... writes:

>

><< I am going to a

> rheumatologist/immunologist on the 31st of this month >>

>Good first step Mel. I wish you luck that the one you are going to is a

>good

>one. I lucked out. Many here have had bad experiences with the first

>rheumy

>they tried. If you don't like this one, get another, until you find one

>who

>will work with you and your desires (having more kids, etc.)

>Welcome - and best of luck,

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

August 10, 2001

Boyd <celtichealing@...> wrote:

Thanks! I hope I like him as well. I know I'm not taking any crap from any

of the docs and if I don't like him, onward ho to the next one!!!! I'm glad

this list is here for support, at least I know there are others in the same

situation that I am.

Mel

Mel,

Way to go. Don't take any crap from any doc. Rheumatologist's for some reason

have a notoriously bad reputation. Most are dead set against pain meds but will

push NSAIDS that tear your insides up. Of course, they will give you something

like tagamet, prilosec, etc... so you can't tell. I have not been back to my

rheumy in several months. The reason........ the next to the last time I was

there I was in excruciating pain with every joint in my body hurting and my

right knee was swollen to the point it had to be drained. I was crying because

of the PA pain and she told me she refused to see me if I kept on crying. She

did see me as my hubby was with me and he gave her a look that could kill. I

went back one more time and I acted very aloof making her dig for answers. When

she asked how I was, I said fine and you!!!!! The appt. took twice as long

because I made her dig for what she needed. She was much nicer and even a

little humble. She likes to leave the office on time and I took up at least 2,

maybe 3 slots. I bet next time I see her she will let me cry and spill my guts

about where I hurt. Anyway, so much for my experience. Hope you find a good

rheumy who will listen. In the long run it makes their job easier.

Shirley

---------------------------------

August 10, 2001

In a message dated 8/10/01 1:13:45 PM Central Daylight Time,

shenry_123@... writes:

>

Way to go Shirley!!!!!!!!!!!!!!!! Humility can be very rewarding to the

observer.

Chicagoland Sharon

October 9, 2001

I too have PA and migranes. When the pain is bad in my

hips from the PA, my migranes tend to lessen. After I

get the cortizone injections in my hips for the PA, My

hips get better, but then my migranes come back. I

don't know which is worse, I would rather have neither

:-). The Vioxx did not work for me, I am on the maxium

dose of Azulfidine, but is not doing much itself. I

soley depend on the cortizone injections about every 3

to 4 months to control my pain. I know how it is with

the migranes.I woke with one this morning, and had to

take one of my Immetrex shots. I hope the meds they

have you on work for the PA. The cortizone injections

hurt like !@#$, but after a day or so I am pain free

for about 2.5 to 3 months.

Good luck, and if you need anything feel free to

e-mail me.

Thanks,

--- pam northam <strawberripam@...> wrote:

> Hi...My name is Pam and I was diagnosed last week

> with

> Psoriatic Arthritis...I have been on my medication

> for

> a week now and am just trying to I guess see if it

> is

> going to work or not...They put me on Sulphalazine

> and

> vioxx...I have had psoriasis for as long as I can

> remember and I really don't know when the PA showed

> up, but I know in the past year it has gotten really

> bad, so my doctor referred me to a Rheumatologist

> and

> she immediately said that it was PA...So at least I

> have gotten started on trying to help the pain and

> stiffness...Pretty much the pain is in all my joints

> and just varies day to day on how I feel...I am also

> trying to get to the source of my migranes and

> dizziness, but right now I am taking each thing one

> at

> a time...But just wanted to introduce myself...

> Pam

>

> __________________________________________________

>

October 9, 2001

, thanks for the welcome...I don't like shots so

I think for now I will stick with the vioxx and

hopefully it will work...I hate when you wake up with

a pounding migrane and it feels like someone is

hammering your head...I think though, I would rather

have a shot than the migranes...Cause sometimes mine

will last up to 5 days at a time... Pam

__________________________________________________

October 11, 2001

Do you take the immetrex shots for headaches? I use

them as a last result. I normally take Feoriciet for a

regular headache.

You may want to think about the cortizone injections

for the PA if the pain gets too bad. It is worth it.

When my PA flares up I get to the point where I can

not walk. After the injection I am a new person.

See ya,

--- pam northam <strawberripam@...> wrote:

> , thanks for the welcome...I don't like shots

> so

> I think for now I will stick with the vioxx and

> hopefully it will work...I hate when you wake up

> with

> a pounding migrane and it feels like someone is

> hammering your head...I think though, I would rather

> have a shot than the migranes...Cause sometimes mine

> will last up to 5 days at a time... Pam

>

> __________________________________________________

>

October 11, 2001

, hey...Thanks for the info...No they don't have

me on Folic Acid...With me I don't get sick with the

sulph...I have had no side effects so far...I go back

to my Rheumy on monday so I will find out more...I did

kinda find out today, when I went to my regular

doctor, more about the blood tests the rheumy

took...Something about my red blood cells, my anemia

has come back, the protein in my urine was 3+ and my

sed level was higher, but I am sure she will explain

it in more detail on monday so I will know more...If I

did tan with the sulpha, LOL, it would be something

cause I am so white if I am out in the sun for 30

minutes I am a lobster...Thanks again... Pam

__________________________________________________

October 11, 2001

, no...They are still trying to get everything

else in my body under control right now, so we haven't

even gotten to the migranes yet...I usually just take

my migrane excedrin...That is all...We ran into some

more problems with my blood work...Such as something

to do with my red blood cells, not sure what...the

protein (in my urine) is too high it is 3+, and my sed

level was higher, something to do with creatine and it

turns out my anemia has come back and some other

things...This blood test was done before I started all

my meds for PA...so I don't know what is up right now,

plus now my lymph nodes on the back of my neck and one

beside my ear on my cheek is swelling up...It is

driving me crazy, cause all this stuff is happening at

once... Feel like screaming as loud as I can at

times...LOL...Oh well...Thanks, talk to ya later...Pam

__________________________________________________

February 14, 2002

I have never taken the MTX pills, but the shots had an

instant effect when I started them. My P and PA

disappeared almost over night.

That was the plus.

The bad, I now may have liver damage. I have been off

the MTX shots for 2 weeks, and the pain in my hips,

knees and sholders is coming back rapidly. I go

Tuesday (02/19/2002) for more bloodwork. You may want

to think about the shots, but beware the side effects.

Let me know if you want to hear more.

February 14, 2002

At 05:39 AM 2/14/02 -0800, you wrote:

>I have never taken the MTX pills, but the shots had an

>instant effect when I started them. My P and PA

>disappeared almost over night.

>That was the plus.

>The bad, I now may have liver damage. I have been off

>the MTX shots for 2 weeks, and the pain in my hips,

>knees and sholders is coming back rapidly. I go

>Tuesday (02/19/2002) for more bloodwork. You may want

>to think about the shots, but beware the side effects.

>Let me know if you want to hear more.

>

Hi,

Would you mind my asking what dosage you were taking in the shots

and how often? And how long you have been on it before discovering that

you may have some liver damage?

I take the tablets (6 tabs @ 2.5 mg each =15 mg total) once a

week. My problem is that it doesn't seem to be helping very much. I read

in the insert that sometimes the MTX can cause a flare up of the psoriasis

and that seems to have happened in my case. Increasing the original dosage

of 4 tabs to 6 tabs hasn't seemed to alleviate the flare up of the

psoriasis I've gone through 2 of the 15 mg. tubes of Psorcon-E ointment

and it seems to have lost some of it's effectives .

I'm really in a quandary here and am very interested in all the

messages about MTX since I'm taking it. I'm still very new to this

medication so am reading the messages with interest (for reference

tools). I've been able to look at it and come up with some 'real'

questions for my Rhmeu. on my next visit. I know the blood tests are

extremely important so that they can tell if there are changes from visit

to visit. So far, mine have been normal. But then, it's only been a

couple of months that I've been taking the MTX.

What happens if your blood work shows a possibility of liver

damage, other than they take you off the MTX? Have they said if you will

be able to resume taking it if your tests become negative? Or given you

other options? Can you not take anything for your pain?

Regards,

P

February 15, 2002

P,

Have faith. MTX takes a while to really work and can take longer with the p

than the pa. I would suggest continuing with topical treatment of the p while

your on the MTX. Also, have you ever tried a paraffin bath? It can do wonder

things for exceptionally dry skin on the hands and feet (it won't cure the p,

but can relieve the symptoms). The heat of the wax also is very soothing to

your arthritis. If you dip a few times and then wrap in plastic wrap for awhile

( 10 minutes?) it can do wonders. QVC.com has a good one available now...look

under health and fitness or beauty. just a thought.

Otherwise, hang in there. It WILL get better--won't go away forever--but is

likely to improve with time. Moderate exercise and REST are important.

in VA

March 4, 2002

Hi in Va :-)

You are right......the MTX does seem to have kicked in and is

helping some with the PA...I'm still working with the P; it's a bit

trickier. I went back to the doctor last Friday and he gave me a

prescription for

Ultracet for the pain, so hopefully that will help too.

Like everyone else here, I have good days and bad ones. I don't

expect miracles but am hoping the MTX will give me

some 'rest' periods. My psoriasis has been in a flare-up for going on 6

months now and I just don't see an end anytime soon.

Thanks for the encouragement. The Rheumatologist told me that it

can take up to 4-6 months to get the full effects of the MTX so I'm very

hopeful :-)

P

November 11, 2006

Hi, I am new to this list. My son, Max, was diagnosed with PDD-NOS

when he was three, he is almost eight now. He has overcome many of

his problems, he talks a blue streak, socializes, gives us hugs and

kisses, is willing to wear " ouchy " clothes (in particular jeans), and

is keeping up with learning in his first grade class (he repeated

kindergarden). My question is his weight. Max is a little fellow.

He was diagnosed as " failure to thrive " at six months of age, and

fell off the growth charts. We went through many, many rounds of

testing, his calorie counts showed he was getting 200% and more of

the calories he needed; we even did two biopsies of his intestinal

tract (both came out normal). His latest physical two weeks ago shows

he is now at 30th percentile for height and 5th percentile for

weight. This is a tremendous improvement, he is at least on the

chart now. He is a very picky eater, and potatoes seem to be his

biggest problem (he dislikes candy, ice cream and chocolate too, but

THAT is not a problem). He will actually throw up if he eats mashed

potatoes. He prefers green beans, hot dogs, lettuce, etc. We have

been giving him a daily multi-vitamin, an over-the-counter brand, but

I would really like to get some weight on the boy. His eldest

brother is 6'1 " , his three sisters are all over 5'7 " , and his 14 yo

brother is starting a growth spurt (he is 5' 6 " ). On a side note, my

husband has absolutely refused to admit Max has a problem of any

kind; regardless of what the doctors say. BTW, we live in a rural

area, with no pediatricians near, we go to an internist as our family

doctor. Any advice would be appreciated.

November 13, 2006

> I would really like to get some weight on the boy.

Try EFAs, like fish oil or flax oil. See if that helps.

All my kids are at the high end of the chart for height, except my #3.

It took a lot of interventions to get him close to his siblings.

Chelation and anti-virals appear to have caused the most improvement,

altho I also used several supplements for him.

Here is my kids' story [focusing mostly on #2 and #3], if you want to

read what I did

http://www.danasview.net/myson.htm

Dana

November 13, 2006

I used a shake called Reliv or you can use something like pedisure. He needs

the maximum nutrition.