Another Question

August 1, 1999

I have had no digestive problems with my PA. I was thankfully spared that

curse. ))))) Annette

August 3, 1999

In a message dated 08/03/1999 5:59:29 PM Eastern Daylight Time,

SAWalter@... writes:

<< Does anyone seem to be extra sensitive to hot and cold? >>

I am not extra sensitive in the direct sense..but last winter I developed

Raynauds Syndrome. My computer is upstairs which is usually 10 degrees

warmer in the winter. After several hours online, when I go back downstairs

every evening ...within minutes my hands turn snow white and are ice cold.

This lasts 20 to 30 minutes then subsides. I have never had this before last

winter. Gee...what next?

Annette

August 18, 1999

> Does PA continue to get worse as time goes on even if you take

> MTX? I feel like I have a very mild case of it compared to many

> of you. I have swelling in my hands at times but not constantly.

> My fingers are stiff and do ache though. Sometimes my left knee

> will act up and I have a terrible time with the steps, my hips

> and lower back give me problems. I guess what I am trying to ask

> is were any of you diagnosed early in the process of PA and are

> now a lot worse?

Right now, I'm the best I've been in 20 years! (Almost.)

But to answer your question about whether my PA has continued to get worse as

time goes on even though I've been taking mtx isn't quite that simple.

When my PA first developed it came on very fast - within a few months. When

I first saw the rheumatologist, he diagnosed " severe psoriatic arthritis " and

immediately put me in the hospital. I've been treated with MTX and an NSAID,

and it has done a very good job.

Most of the time, my PA has been in a yearly cycle - it's good in the summer

and bad in the winter. Summer was a period of recovery for me. However, I

noticed over time that I didn't fully recover each summer. For instance my

knees would remain a tiny bit swollen when the next " PA season " started.

Year after year this got worse and worse. And the accumulated swelling in my

knees kept increasing.

I was concerned about this and because of this and because my PA was

definitely affected by cold weather I decided (about 10 years ago) to move

from a cold climate (Maine) to a warm climate (Arizona, then California). I

have been surprised that that accumulated swelling has completely

disappeared. That's the good part. I certainly still have PA. And, in

fact is worse since I have now also been diagnosed with psoriatic psondylitis

(PA in the spine). But then on the other hand, I've been in almost total

remission for the last 8 or 9 months! I've been taking no MTX for the last 8

months, and no NSAIDS for 1 or 2 months, and I'm doing just fine!

So, for me, I don't think that my PA got worse, but rather that my symptoms

accumulated. (I've come to the conclusion that if my PA had been treated a

little more aggressively, with a slightly higher dosage of MTX, that those

symptoms would NOT have accumulated the way that they did.) And, right now,

I can say that my PA is much better. This may simply be a temporary

remission, but over the last few years before this remission, my PA has been

no worse than it was 15 or 20 years ago. (Knock on wood!!!!)

Rick G

August 18, 1999

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<html>

Lee Ann,

I was dx at age 26 and I am now 32. & nbsp; I feel as if I have lived

a lifetime in those 5 years! & nbsp; I was first treated with NSAIDS and

when I had my first flare up, which made me almost immobile for several

months (we lived in an isolated area of northern canada, where medical

tx were few and far between), I finally got out to an RH. & nbsp; I discovered

I had plantar fascitis and was put on methotrexate along with the continuance

of the NSAIDs. & nbsp; I stopped taking the NSAIDs about 3 years ago and

have been doing very well with methotrexate. & nbsp; Like yourself, my symptoms

seem very mild compared to what I hear others talking about. & nbsp; But

any pain I feel is still very real for me and I have to deal with it whatever

way works for me. & nbsp; I finally learned to just say " no. " & nbsp; I don't

use my PA as an excuse to get out of things, (altho sometimes it is handy

as an easy copout!! *giggle*) but I don't hesitate to tell people when

it is the reason for me not doing many things...one being employed. & nbsp;

Even though I manage well getting around, the fulltime emplo thing is out

of the question for me. & nbsp; I get tired easily and often take afternoon

naps. & nbsp; Even working part-time is pretty unattainable right now, as

I am so unpredictable. & nbsp; My husband and I have agreed that while he

is able to support us both financially, why put me through any pain or

discomfort, simply to have the extras?

Now, what was it you asked?? Sorry, I went off on a tangent there. & nbsp;

I am just so delighted to be able to share my experiences with others that

I just want to sit down and write and write and write and write...I digress.

All I can say is that my PA has not worsened. & nbsp; Even my psoriasis

has cleared up considerably and I only deal with minor skin irritations

around my belly button and between my buttocks. & nbsp; In the winter months,

my hands may crack and bleed occasionally, but I simply have to keep some

moisturizer on them. & nbsp; I suspect that I will have more flare ups over

the years but I figure I have been there and done that, so come on, bring

it on!!! & nbsp; I can handle anything!

And just another note: & nbsp; I also have diabetes, pcos and suffer from

anxiety attacks. & nbsp; I guess each condition acts as a diversion from

the others.....all I know is that by the time I am well up in years, I

will be quite experienced with medicine!

Janet

and for anyone who got this far, thanx for your patience and interest!

& nbsp;

& nbsp;</html>

August 18, 1999

Janet, I am 66 and raised children and now help with grandchildren and enjoy

every day. I've always had " something " like arthritis, GI bleeding or

whatever since I was 17. During that time my mother was going through cancer

and metastisis and I went through nurse's training, got married my husband

and I were transferred to all over to get a better job. Attitude was always

instilled in us, and I try my best to do the same for our children. I was

always very active with whatever was going on. Now in the past 3.5 yrs that

I have PA I have had to quit as nursing supervisor (I can't write) and

therefore it has changed my life somewhat, really significantly as far as

working is concerned. I hope your husband and family are as understanding as

mine. I did work my butt off and loved every minute, as I was making the

quality or time of patients lives better. Now I have to concentrate on my

family and that is important. You and I have done well and we're not done

yet. There's a lot of good left in us that we will share and enjoy. Don't

ever think this is the end of the line. Keep positive attitude and we'll be

just fine. I'm like you, I don't have all these horrible symptoms so many

have that have written in. God love them every day. We may get there, but

'till then enjoy every day. My husband just finished chemo after surg for

colon cancer. Hey, we're OK. Always think happy thoughts. Betty in Va

August 18, 1999

> were any of you diagnosed early in the process of PA and are

> now a lot worse?

Lee Ann,

I am more challenged now then when I was first diagnosed. But then I'm

better then I've been at times too. I used to love to ski. But the PA hit

my left knee big time and for a a long time, I could hardly walk. Last

winter I went skiing once for the first time in 4 years!! Now it's my hands

that are killing me - but the leg is pretty good. It moves around.

Vicki

August 18, 1999

>my PA was definitely affected by cold weather >

Interesting you should say that. Mine was too. We moved from Minnesota to

the Pacific Northwest - Seattle area. And boy what a difference that made.

Both Rheum's - here and there - said that weather doesn't affect PA. Huh?

That's not my finding. There may not be any scientific data to that affect

but I sure have less problems overall in a mild climate.

Vicki

August 19, 1999

In a message dated 08/19/1999 9:11:10 AM Eastern Daylight Time,

VLarson169@... writes:

<< From: VLarson169@...

> were any of you diagnosed early in the process of PA and are

> now a lot worse?

>>

I am worse. I was in terrible shape when I was first hit overnight. I was

in so much pain I left the house 4 times in 18 months before finally going to

the doctor. The MTX made a difference and got me walking again, but each

time I have gone off the MTX to fight URIs etc...it has been less effective

when I got back on. This last time I went off MTX 4 months ago to fight

bronchitis, I was thrown into a terrible relapse which I have yet to recover

from. I have now resorted to taking the dreaded Prednisone in hopes of

getting relief.

One of the most consistent things I have noticed from the various posts at

the arthritis boards is that these meds often work for a period and then quit

or become less potent...we are fight this disease with medicines that are

less than ideal...and most of the times when we get worse it is because one

of these meds let us down.

Annette

August 19, 1999

In a message dated 08/19/1999 9:11:16 AM Eastern Daylight Time,

VLarson169@... writes:

<<

>my PA was definitely affected by cold weather >

>>

Cold???? Whats cold weather??? (Spoken tongue-in-cheek from a VERY hot

lady in middle Georgia where the temp has been hovering around the century

mark all summer..and the humidity too. ) Yes, we have AC...it's 75

downstairs and 85 up here where the computer is...and the bed. The elec.

bill was still right under $400 this past month. They don't call it HOTLANTA

for nuthin'.

Annette

August 19, 1999

> the temp has been hovering around the century

> mark all summer..and the humidity too.

Oh man, Annette.

I feel so bad for you. I couldn't stand that. The heat is even worse then

the 40 below temps as far as I'm concerned. I hate humidity and I can't

stand it when it gets over 80. It's hard to breathe in an oven. I can

barely tolerate it above 75. I don't know how you do it. Even with air

conditioning. Poor you.

Vicki

October 31, 1999

In a message dated 10/31/99 2:27:57 PM Pacific Standard Time, gmckin@...

writes:

<< It's sort of pinkish/reddish, sometimes a little bit raised and bumpy

but often smoothe right under the skin, blotchy patches that in some

areas look like you've dragged a fingernail across it to scratch, when

you haven't. It's hard to describe. Very distinctive, though. Not itchy. >>

It looks kind of like a poison-ivy rash, only not quite as raised and it

doesn't itch. Mine tends to show up on the palms of my hands.

cheers

Jenni

October 31, 1999

Hello Amy,

That's a very good question! As far as I know, I don't think so. I have

heard of kids with the systemic onset gradually losing systemic type

symptoms and basically dealing with regular arthritis in the affected

joints but I've never heard of the reverse happening. I'm going to ask

our doctor about that though, at our next appt. I'll be looking forward

to seeing others' responses to this here, too.

On Wednesday and Thursday Josh had a major still's rash. It lasted

several hours, from waking up till about 2 in the afternoon. That's a

long time. It often fades away just a couple hours after Josh takes his

morning medicines. Strangely enough, he didn't have a fever those days.

This morning when he woke up his temp was 102. And yet the rash was very

mild. He always seems to get it in the same areas. His inner thighs

mostly, his trunk, and upper arms. Only sometimes on his back. In the

upper area. I'm not sure if the rash can appear in different places for

different people. I really wanted to take a picture of the rash a couple

days ago, to send to for her Still's web site, but we only had

two pic left and needed them for pictures of the kid's pumpkins. Plus, I

don't think Josh wanted to have a pic taken of it that particular

morning. He wasn't in too good of a mood.

It's sort of pinkish/reddish, sometimes a little bit raised and bumpy

but often smoothe right under the skin, blotchy patches that in some

areas look like you've dragged a fingernail across it to scratch, when

you haven't. It's hard to describe. Very distinctive, though. Not itchy.

That was one reason we mentioned it to the school. I didn't want them to

think that Josh had some sort of contagious skin disorder :-)

I hope someone else here can give you a better description and help

answer your question!

Take care,

Georgina

Amy Fox wrote:

> hello! I have another question. went from having pauci to

> ploy-articular arthritis. Okay, I'm curious if they can go from that to

> the other form of arthritis (still disease)?? I keep noticing a rash on

> 's small of her back. No fever but that could be because of the

> medication (that is what the pharmacist told me).

>

> For those of you with child who have this type of arthritis... how long

> does the rash last? What does the rash look like? Where was the rash

located?

>

> Amy

November 2, 1999

My daughter had the classic rash, so much so that other doctors were

all brought in to see it! It was transient in that it would come up any where

on the body. If scratched her self it would come up around the

scratch. If her sister bit her (she is 2) then it would come up where she

was bitten. Any insult to the skin would cause the rash in that area. It

would appear as if she had been dragged through brambles. It would be linear

and as the day progressed it would become dark read on the outer perimeter

and a salmon color in the middle. It would go while she slept and would

appear again after lunch. Always in different places. It would get bad after

a bath too. As time went on (6 weeks) it would be so bad at night that it

wouldn't quite go at night. It was as if it were a shadow under her skin in

the morning. She had all this without the joint pain and without fever at

the very beginning. Then came the pain, then the fever and then of course all

together everyday for two weeks of hell while the doctors tried to figure it

out. The first Rheumy that saw her said " Oh classic case of Systemic JRA " and

I said " What " ?

November 2, 1999

Hi,

We've had a fun experience by scratching a design or letters around the

areas where Josh gets his rash, and watching for a few minutes while the

design takes shape before our eyes :-) Just like the bite marks, the

reddish pink rash will form around scratched areas, too ;-) It's a cool

trick Josh can perform effortlessly and his friends are amazed!

Yes, in our case the pediatricians were not quite sure what to make of

the rash when they first saw it. However, when we met with the pediatric

rheumatologist ... he was immediately familiar with it. It, along with

all his other symptoms and blood test results, helped with the

diagnosing.

Aloha,

Georgina

Skis@... wrote:

>

> From: Skis@...

>

> My daughter had the classic rash, so much so that other doctors were

> all brought in to see it! It was transient in that it would come up any where

> on the body. If scratched her self it would come up around the

> scratch. If her sister bit her (she is 2) then it would come up where she

> was bitten. Any insult to the skin would cause the rash in that area. It

> would appear as if she had been dragged through brambles. It would be linear

> and as the day progressed it would become dark read on the outer perimeter

> and a salmon color in the middle. It would go while she slept and would

> appear again after lunch. Always in different places. It would get bad after

> a bath too. As time went on (6 weeks) it would be so bad at night that it

> wouldn't quite go at night. It was as if it were a shadow under her skin in

> the morning. She had all this without the joint pain and without fever at

> the very beginning. Then came the pain, then the fever and then of course all

> together everyday for two weeks of hell while the doctors tried to figure it

> out. The first Rheumy that saw her said " Oh classic case of Systemic JRA " and

> I said " What " ?

February 26, 2000

Hi :

One year ago I decided that I had it with metro and plaquenil so I gave it

up and went on minocycline and I have never felt better.

Mado

rheumatic another question

>From: meekrseekr@...

>

>I see there are a lot of people who are on minocycline and are still taking

>other medicines like methotrexate and plaquinil. I was hoping to not have

to

>go there if I take minocycline...is this just wishful thinking??????

>

>Thank you for sharing,

>

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February 26, 2000

Me too . Three months into AP I stopped taking Metho and had already

stopped plaquinel because of the possibility it would bother my eyes which I

had to have checked every six months while on it. I wasn't on it very

long, perhaps 6 months, but had taken Metho about 2 years. I didn't

notice the difference in not taking it either.

Bev

>

> Hi :

>

> One year ago I decided that I had it with metro and plaquenil so I gave it

> up and went on minocycline and I have never felt better.

> Mado

February 27, 2000

: I'm down to 2.5mg. methotrexate from 10mg. since starting AP, and

expect to be totally off it next month. Doing better than ever on Minocin!

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

February 27, 2000

,

I'm only taking 200mg Minocycline MWF. I was diagnosed with RA 3/98 and

started AP a couple of months later. I don't even have to take NSAID's. So

far so good!

Ute

>I see there are a lot of people who are on minocycline and are still taking

>other medicines like methotrexate and plaquinil. I was hoping to not have

to

>go there if I take minocycline...is this just wishful thinking??????

>

June 6, 2000

Stacie,

People who are gaining weight is Hypothyroidism which is slow metabolism and

those who are Hyperthyroidism that loses weight which they have fast

metabolism. I have been hypo for 3 or 4 years. I've been overweight for

years and I have had a hard time losing the weight. Its tough but I have

tried to find a diet that works for me but it has been slow. I also have

been hyper for a while but trust me you don't want to be hyper because it is

worst than being hypo. UGH!!! Don't be afraid to go to the website.....

www.ithyroid.com and you will find lots, lots of information on this disease.

Hope this helps.

Best to you,

Kozy

June 7, 2000

KOZY,

Any good diet tips for us HYPOs? I lose weight so very slowly and keep

gaining back anything I lose.

--kathleen

In a message dated Wed, 7 Jun 2000 12:22:34 AM Eastern Daylight Time,

KTenn36117@... writes:

<< Stacie,