Re: Welcome to @onelist.com

[Guest guest]

I have just found this support group on ONEList. - thank you for

taking the time and energy of coordinating this group. I have had PA for two

years. I have been on indocin for two years and methotextrate for 1 1/2 yrs.

I am interested if anybody has tried the KNOX NutraJoint mixture. I am

curious if it has helped anybody with PA.

I look forward to participating in this group and sharing our experiences.

REGE

[Guest guest]

I tried Knox for a while and did not see any improvement. I am 36 and have

had PA for the last 2.5 years. Currently I am trying Asulfadine(sp) and

Relafin.

I'll be back at the Doctor Monday for a 2 month check up.

[Guest guest]

Hi all,

I have had Ps for 16 years and PA for 12 years. My PA was limited to an index

finder until about 2 years ago. Now it would be easier to list the unaffected

joints. After the initial dx I was on Prednisone for a year. I was actually

able to forget that I had a " disease. " I guess I kinda' thought that I was

cured, I didn't feel any pain so I thought that maybe it had gone away! Silly

me. Anyway, I was told I had been on pred too long (1yr) and should wean.

This was in April. Within a couple of weeks I was reminded about this

disease, I had so naively forgotten about. I am now 2 months into

Methotrexate, not much relief yet.

I also want to thank for giving us this opportunity. It sure makes

the bad days better knowing that there is someone to talk to.

Well, that's my story and I look forward to " talking " with all of you.

Be well,

Trish

[Guest guest]

Hi .

Thanks for the warm welcome. Looking forward to talking with others and

gathering as much information as I can about this disease.

I also have had PS for 25 years and was diagnosed with PA 10 years ago.

I am really glad to have found this group. Looking forward to talking

to you all.

Oh, , LadyAndy said for me to say hi to you.

Angera

[Guest guest]

Hi Trish,

Welcome aboard! I am new here too! I was diagnosed with PS 25 years

ago and PA, RA, Osteo and borderline lupus 10 years ago. Bummer!

Question for you. My left index finger was the first to be affected

also. Do you know if this is indicative to this disease? Thought it

was quite interesting we both started out the same way.

I am also on Methotrexate. On and off I should say. I develop mouth

sores, infections and high liver counts. It seems when I can get up to

3 a week one of the above happens, then I have to cut back, skin lesions

worsen and I have a hard time navigating. I also am on Prednisone only

I get it by injection once a month and if I can't make it through the

month I'll take it orally until I see my Rheu. again. I am also on an

NSAID, Dolobid. I have been on it for about 2 years now. I have been

on quite a few over the last 10 years but seems that I take them for

about 1 year and they don't help anymore. This one so far is working

(knock on wood).

Enough of my rambling. Looking forward to hearing from you. Stay well.

Angera

[Guest guest]

On Mon, 28 Sep 1998 14:43:23 EDT, MMSsmom@... wrote:

>From: MMSsmom@...

>

>Hi all,

>

>I have had Ps for 16 years and PA for 12 years. My PA was limited to an index

>finder until about 2 years ago.

Trish, mine started out in my index finger also. For years that was

the only joint affected and the Drs. didn't have any idea what caused

it. I didn't have any psoriasis at the time.

Steve

http://www.zoomnet.net/~steve

[Guest guest]

Hi Angera,

That is really interesting that your PA also started in an index finger,

Steve's did as well. There may be something to that.......hmmmmm

Did your Ps clear up with the mtx? One elbow seems to be clearing, that may

or may not be due to mtx.

I see my rheumy this afternoon. I guess he'll increase my mtx to 15mg/wk, all

I know is that I'm ready for some relief. Hope my labs are still okay. I have

found that walking with " new balance " tennis shoes makes it more bearable. As

soon as the shoes come off though.....ouch!

So, you're on quite a few meds. Does that keep you pain-free? Or is that just

wishful thinking on my part?

Well, my three year old is demanding attention...........take care all.

Trish

[Guest guest]

Hello Steve,

That is strange about us getting it in an index finger. No one ever dx me

either, even though I had Ps. It wasn't until the disease progressed that I

was dx 10 years later!

How is your PA today? What meds are you on?

Hope to hear from you soon.

Trish

[Guest guest]

Hi ,

I've had arthritis for 4 1/2 yrs. now and was diagnosed with PA after my

toe nails started showing white patches. After 9 months of trying

everything I ended up on methotrexate and ultradol(NSAID). These have

done me well and generally I have had very good control. Recently tried

to reduce the NSAIDS, got down to one per day from three and my knees

and wrists started to flare. I've bumped it back to 3 again and with the

help of a cortisone shot in the knee everything seems to be under

control again.

When I was at the dermatologists recently she told me the white stuff on

my toe nails was fungus so I am using a fungus cream for that. She took

scrapeings for diagnosis purposes which won't come back for another 2

weeks. My confusion here is that these things (psoriasis) and fungus

look identical. Is that right? At first I just thought my diagnosis of

PA must be wrong then if this is fungus and not Ps but my RD said the Ps

had weakened the nail bed which made it suseptible to fungus. Does this

make any sense to anyone?

Sorry this is so long.

Talk to you later.

" And the beat goes on. "

[Guest guest]

On Wed, 30 Sep 1998 14:39:28 EDT, MMSsmom@... wrote:

>From: MMSsmom@...

>

>Hello Steve,

>

>That is strange about us getting it in an index finger. No one ever dx me

>either, even though I had Ps. It wasn't until the disease progressed that I

>was dx 10 years later!

>How is your PA today? What meds are you on?

>Hope to hear from you soon.

>Trish

>

Hi, Trish! Seems a bit more than coincidence that it would start in

just an index finger so many of us. I didn't have Ps until years after

the arthritis. I wrote a post to ASA about my history when I first

de-lurked there, I'll just paste it in here and save a bit of typing!

<G> It's kinda long though.

A little history:

I'm 34, I've had PA for about 5 or 6 years now, but it was only

diagnosed 2 years ago. It first started just in my right index finger

really painful at first, but eventually it settled down. The knuckle

was just one big lump that wouldn't bend much but at least it didn't

hurt so bad after a while. The best my Dr. could suggest was soaking

it in epsom salts, the test for RA had come back negative, and there

was no sign of psoriasis. Then about 2 years ago my finger started

swelling again, and then my toes then my knee. I was running a low

grade fever all the time. So I call the Doc, she says take ibuprofen,

soak in epsom salts. Things just get worse so I call back and get an

appointment in about 3 weeks. Meantime I'm trying to work like this

cause I have one of those jobs where if you don't work you don't get

paid, no sick days in other words.

Finally see the Dr., she can see something is wrong, she sucks about

60cc of fluid out of the knee, sends some of it, along with some

blood, to the lab. Well, it's not gout and its still not RA. She sends

me to an Orthopedic <SP> Dr. , who does some blood work. Guess what?

It's still not RA! : ) He does give me a shot of cortisone in the

knee and WHAM! Next day the knee is good as new. He sends me to a RD.

It's another few weeks wait for that, by then I'm over the flare, and

wondering if it's worth messing with. After all, I'm not hurting as

bad now and this may never happen again. I have insurance, but it

doesn't pay everything, and the x-rays and blood tests are starting to

add up. Fortunately my dear wife threatened... Umm.. cajoled me into

keeping the appointment..

The RD looks me over, notices I have a rash on my knee that's been

there for about 6 months. He asks if I'm ever fatigued. OH BOY! Can't

really remember the last time I wasn't tired. I'd just chalked it up

to bad diet and lack of exercise. When I was really down on my self,

I'd just figure I was just lazy!

Of course he diagnoses PA. Still wants more blood tests, x-rays,

Starts me out on NSAIDS, I forget what , something real mild. He wants

to start out with stuff that has the least side effects and work up

from there. So we begin a pattern. Try something for about 6 or 8

weeks, go through a lot of nausea and bloating feelings till I get

used to the stuff, then he puts me on something else because there

hasn't been any change in my condition. DR: " Has the medicine helped

your condition? " ME: " Well, Doc I'm not any worse but... "

Finally he puts me on Asulfidine. Explains the potential side effects,

wants blood tests every 2 weeks (OH JOY). After about a month his

office calls up, stop the Asulfidine ASAP, liver levels are high. So I

wait a month, have some more tests, still high. He sends me to an

Internist <SP> who want's yet more blood and a liver CAT Scan. " Hey

Doc, those CAT SCAN thingies are EXPENSIVE! Can we wait and see what

the blood tests say first? " Of course not! So here I go into debt

again!

Tests all come back negative. I go to make an appointment with my RD

and am told he's moved out of town. Or maybe out of state! By then I'm

about broke, and thoroughly disgusted and swear off doctors for good!

Or at least until I have another flare up around the first of May. All

the joints that were already affected are hurting like crazy, and the

ring finger on my right hand is starting to go. So I call my Dr. to

get a shot of cortisone in that joint, hoping that at least to save

that one. This time she gets me in right away, I get the shot,

absolutely sure that it will fix me right up. She also insists that I

see another RD and by then I'm in complete agreement.!

So I find a RD that's on my HMO's list and make an appointment. Four

weeks is the soonest he can see me. Wonderful! By then it's clear that

the cortisone isn't having any effect at all, and I'm in PAIN and

still trying to work.. So I call my Dr. to see if there's anything she

can do to get me through till my appointment. PREDNISONE!!! YEAH!!!

60mgs the first day and the next day I'm feeling great! Then it's

50mgs the second day, and still doing good. Then 40, then 30 then 20

then10 then nice preddie all gone and Steve's hurtin' again and still

3 weeks to go!

So I call again. The nurse explains " Prednisone is a steroid, lots of

side effects, the Dr. doesn't like to prescribe it any more than

necessary. So on so forth... " But she relents, this time 60mgs for 2

day 50 for 2 40 for 2 and so on. But this time it doesn't seem to help

quite as much, but still it's a lot better. Till I run out. By the

time I call her up again I'm starting to feel like a junkie hittin' up

his pusher for one more hit. " Come on man! I'm good for it! Honest! "

This time it's 10mgs a day. And just enough to last me till my RD

appointment. And with strict orders to see the RD! As if I had

anything else in mind.

Jeeze! I'm writing a book here! Well, I've come this far, might as

well finish.

Finally get in to see the RD. I've brought my records because I half

expect him to want me to have all the tests all over again. I AM

PREPARED TO FIGHT OVER THIS!

He looks at my hands, asks a few questions. Diagnosis: PA!

He looks at the records of all the tests. Looks at me, " What are all

these tests for? " As if I had somehow been the one who ordered them

done. " Here we look at the patient. The patient can tell you more than

all those tests. THERE IS NO TEST FOR PSORIATIC ARTHRITIS ANYWAY! "

So, finally, here is where I stand: MTX 7.5mgs weekly, 10 mgs

Prednisone daily until the MTX kicks in, 1mgs folic acid daily I guess

for as long as I take the MTX. He said 4-6 weeks before the MTX starts

working and I'm starting to wonder if I'll make it that long. : ( I

had my first dose last friday, take my next dose tomorrow morning. So

far no side effects. Does this mean I've lucked out and won't get any,

or have I just not taken enough to know yet?

Anyway, I found this newsgroup the day after my visit to the RD, and

it's been a lot of help just lurking around listening to everybody

else stories. I've been on the net for about 3 tears now. Don't know

why it took me so long to search the newsgroups for arthritis!

Since I wrote this my mtx has been upped to 15 mg, I found out I have

diabetes, I've been off prednisone, and back on prednisone, and told

by the Doc that I'll have to change jobs! Actually right now I'm doing

well, a month ago I was doing terrible. I don't know how much of my

current situation is due to the MTX starting to work and how much is

due to the fact that I'm back on preddie.

Steve

http://www.zoomnet.net/~steve

[Guest guest]

Steve,

If you can, get off of the Prednisone as SONN AS YOU CAN!!!! if nothing in

the way of Psoriasis has shown up yet, gettin on and off of a strong steroid

like Pred. will help it right along!!! there are more sneaky side effects

from the steroids for a PA-er than any other arthritis sufferer because of

the " rash " .

>the cortisone isn't having any effect at all, and I'm in PAIN and

>still trying to work.. So I call my Dr. to see if there's anything she

>can do to get me through till my appointment. PREDNISONE!!! YEAH!!!

>60mgs the first day and the next day I'm feeling great! Then it's

>50mgs the second day, and still doing good. Then 40, then 30 then 20

>then10 then nice preddie all gone and Steve's hurtin' again and still

>3 weeks to go!

>

>So I call again. The nurse explains " Prednisone is a steroid, lots of

>side effects, the Dr. doesn't like to prescribe it any more than

>necessary. So on so forth. Diagnosis: PA!

>He looks at the records of all the tests. Looks at me, " What are all

>these tests for? " As if I had somehow been the one who ordered them

>done. " Here we look at the patient. The patient can tell you more than

>all those tests. THERE IS NO TEST FOR PSORIATIC ARTHRITIS ANYWAY! "

>

>So, finally, here is where I stand: MTX 7.5mgs weekly, 10 mgs

>Prednisone daily until the MTX kicks in, 1mgs folic acid daily I guess

>for as long as I take the MTX. He said 4-6 weeks before the MTX starts

>working and I'm starting to wonder if I'll make it that long. : ( I

[Guest guest]

Hi , Welcome. I am a newbie too.

I have the same problem as you do with my toenails. My RD did not

prescribe anything. She said that it was part of the disease and my

nails might fall off. My large toenails have gotten very thick and have

turned a yellow brown color (how lovely it was in sandals for the

summer). My RD said the same thing as yours did about the weakening of

the nail due to PS and PA. My fingernails are also pitted. Not

discolored, thank god, and she also said that this was a symptom of PS.

Aren't we lucky? Hang in there and take care.

Once again welcome.

[Guest guest]

Hi Trish,

Pain free. Gee that's a couple of words I haven't used in a while

(haha). The Metho. has not cleared up my PS, but has kept it from going

out of control. Still have large patches on elbows and behind ears and

on face. It could be worse.

I saw Steve's post also. I was wondering too if there is something to

this. I have had 3 surgeries on my left hand already. One was to try

and get my index finger to bend. I was walking around pointing all the

time. Had a real good Ortho. He is into sports medicine. I can now

bend it half way. I al real happy about that, but my knuckles are quite

swollen all the time.

I'll sign off now and let you go to your 3 year old. We have a 3 year

old grandson so we can relate.

Take Care,

[Guest guest]

Hi All,

I'm new here and didn't really introduce myself. I've had PA for 4 1/2

yrs. now. I take 15 mg. mtx weekly, 5 mg. folic acid, and 2-3 Ultradol

per day depending on flares. As I mentioned before I only had toe nail

involvement as far as psoriasis goes. I was hit quite severly at first

and had a lot of hand damage, expecially my right hand which I use all

the time.

I had surgery last March to tighten the ligaments and tendons of my

right hand knuckles as well as some synovectomy work. Before surgery I

was wearing a custom made orthotic to hold my fingers up as the tendons

were so loose my fingers were all deviated to the right. Now my fingers

are back in line and I can function quite normally. By normal I mean

that both my hands are at about half normal strength. I know this

because I saw the figures at the physio's about strength for my age and

sex and have used their instruments to measure mine. I have done hand

exercises to try to improve strength but could not see much change. I'm

just glad to be pain free now.

Since I've been out of work for over a year now I decided I had to do

something so I started a support group with the help of The Arthritis

Society here in Toronto. I also started an exercise class for people

with arthritis. Believe me this is very new to me but the Red Cross here

has volunteer leadership programs so I took one as well as CPR.

I will be leading my second class tonight. This is just my way of giving

back to so many who have helped me deal with this disease.

Hope you all have a good day.

" And the beat goes on. "

(I'm in a choir, hence the beat reference)

[Guest guest]

,

Is the cream helping your toenails? Mine look awful too, I just always

assumed it was psoriasis. They are thick, yellow, pitted, and the pinky

toenail just fell off!!

Have you, or anyone else had any skin improvement from the mtx?

[Guest guest]

On Wed, 30 Sep 1998 18:34:38 -0700, " Myers "

<the_myers@...> wrote:

>From: " Myers " <the_myers@...>

>

>Steve,

>If you can, get off of the Prednisone as SONN AS YOU CAN!!!! if nothing in

>the way of Psoriasis has shown up yet, gettin on and off of a strong steroid

>like Pred. will help it right along!!! there are more sneaky side effects

>from the steroids for a PA-er than any other arthritis sufferer because of

>the " rash " .

>

>

Hi, I understand about the preddie, really I do, but right now it's

about the only thing that keeps me going. About 6 weeks ago I was

having a terrible time. Couldn't sleep, couldn't work, *extremely*

depressed. I talked my Rd into putting me back on prednisone and

within a week everything was going along fine.Well, not *fine* <G> but

lot's better. I go back to the RD in a couple of weeks, I'll probably

stop the prednisone then and see if the MTX has kicked in.

As for the Psoriasis, so far I just have a patch on my left knee, base

of my spine, and recently in my belly button. It never really bothers

me, no itch or anything. I know a lot less about the Ps than the

arthritis, so any info anyone can give me is appreciated.

Steve

http://www.zoomnet.net/~steve

[Guest guest]

,

I sure can relate to the toenails and sandals! We are lucky though, at least

we can put nail polish on them!

Trish

[Guest guest]

Yes, , my Ps flared big time when I got off of prednisone! As did the

PA. It probably didn't help that I stopped rather abruptly. You see, I was

nursing my baby at the time and an Army Doc told me that it was bad for her.

He said it would stunt her growth and cause her bones to fuse together

prematurely! As it turned out, he was full of it. I ended up having to stop

nursing because of the Ps anyway.

Trish

[Guest guest]

Hi ,

I really consider myself lucky. So far no surgery, no signs of bone or joint

damage.

That's too bad that the mtx hasn't cleared your skin. I was really holding

out hope for that.

Does anyone have a good treatment for scalp psoriasis? Derma-smoothe oil

works well, it's just messy and I have to use it every other day, or it just

comes back.

Take care,

Trish

[Guest guest]

Hi ,

Wow, that's wonderful that you offer a support group and exercise class! How

did you go about getting that started? What type of exercise class is it? I

started going to water aerobics, but had to quit. They do warm-up in the

shallow end by running through the water, this was too painful for my feet.

The only exercise that I can do right now is walking, which doesn't make me

feel like I'm doing anything. I have a 4 1/2 yr old, 3 yr. old, 6 month old

and just moved to Hawaii........I need to get into shape!!

Any ideas? Thanks!

Trish

[Guest guest]

Hello Groupies!

Sorry about the many emails, next time I'll try to answer/respond in one

letter! And I'll try to get a life..........other than this computer! lol

Trish

[Guest guest]

Hi Folks, I probably should introduce myself, but I know most of you from ASA.

My story is simple. Have had what I thought was Osteoarthritis for about 8 yrs.

Have had 2 TKRs in July. But was diagnosed with PA just aa few months ago. The

more I learn about it, the more I think I have had it for about 8 yrs. Didnt go

to an RD until a few months ago, and I have learned the unless you see an RD you

have a good chance of getting an inaccurate diagnosis. Anyway, now I have to

convince an RD that I know what I am talking about.

All I take is Relafen. Am on no DMARDs at all. Hate the idea of taking more

meds (none of them are cheap are they) but think we are going to have to do

SOMETHING. Am giving serious thought to finding another RD. It seems that the

one I see is Semi-retired. He is only in the office 2 days a week. Usually

when

I call, I get his nurse, and she seems annoyed that I am bothering them. So I

am

going to give them one more chance then start looking if necessary.

To anyone who does not subscribe to the newsgroup Alt.support.arthritis, please

feel free to join us at any time. We have a great bunch of folks over there.

And please dont feel like I am trying to high jack this place. Just extending

an

invitation to anyone who might be interested

Char Le Fleur

[Guest guest]

MMSsmom@... wrote:

>

> From: MMSsmom@...

>

> ,

>

> Is the cream helping your toenails? Mine look awful too, I just always

> assumed it was psoriasis. They are thick, yellow, pitted, and the pinky

> toenail just fell off!!

> Have you, or anyone else had any skin improvement from the mtx?

>

Yes, the cream is helping therefore it must be fungus that I have right

now and yes two of my toe nails have pretty well come right off. Thank

goodnmess they were small ones.

When I first started taking the mtx it made the patches of white on my

nails disappear. Since that's the only place I had psoriasis I'd say it

worked.

Cheers,

[Guest guest]

MMSsmom@... wrote:

>

> From: MMSsmom@...

>

> Hi ,

> Wow, that's wonderful that you offer a support group and exercise class! How

> did you go about getting that started?

I was at an Arthritis forum and they were looking for volunteers to

start a group in my neighbourhood. The Arthritis Society here in Canada

has a manual to help you start a support group with lots of great ideas.

I try to book a guest speaker every month or I get a video from The

Arthritis Society. They mail out flyers that I make on my computer and

we started with the mailing list from the forum and it has grown from

there. We've had 30 people attend the group at different times depending

on their interests and availability.

What type of exercise class is it?

The training I took was for people over 55 yrs. to target the older

population. I have adapted that program to suit people with arthritis.

I've done alot of reading and gone to other classes to see what other

people are doing. We start off in chairs and do warm ups including

stretching, then aerobic warm up, aerobic part which is walking

generally in a circle with arm movements, cool down and stretches and

strengthening, and relaxation. The class is 30min. right now but will

increase to 40 min. in a month or so.

I always enjoyed taking a once a week aerobics class before I got

arthritis so when that became out of the question I was looking for

somewhere to go. There is nothing near to where I live so I had to make

up my own class to have it happen.

<I started going to water aerobics, but had to quit. They do warm-up in

the shallow end by running through the water, this was too painful for

my feet.

I can relate to that. I can't walk in barefeet anymore either. Has

anyone got any ideas for this problem when you are at a pool?

> The only exercise that I can do right now is walking, which doesn't make me

> feel like I'm doing anything. I have a 4 1/2 yr old, 3 yr. old, 6 month old

> and just moved to Hawaii........I need to get into shape!!

> Any ideas? Thanks!

I think walking is the best exercise there is. It gets you outdoors and

breathing in relatively fresh air as well as looking around your

neighbourhood. You can practise good posture, something we all need to

do since we sit too much because of this disease. I like to take my dog

for a walk whenever possible. Depending on how my knees are that day

I'll take the short route or long route.

You have your hands full with such young kids. You'd have to wait for

someone to look after them to go for walk unless you had a couple of

leashes and a carriage. How about a dog sled hook up this winter with

the two young ones out front, baby on the sleigh and Mom in back.

Hey I don't know where you live. I'm assuming you have snow. I know I'll

be up to knees in it come January.

all the best,

(long winded today)

[Guest guest]

Trish,

It has been a while since I have had a problem with my scalp (it is

behind my ears now) but as I can remember about 5 or 6 years ago I used

Valisone Liquid. It is clear, but I cannot remember if it was oily or

not. I really don't think so though. I also had real good luck with

Valisone ointment for all my other patches. My Derm. took me off of it

and put me on temorvate (sp?) cream for the skin cause he said it was

better. I think they are about the same. Like I said, it has been

quite a few years since I used the liquid but it might be worth a try.

Good Luck!