New Member

[Guest guest]

Dear Lynn~

You have not invaded us...we welcome new people and encourage people to ask

questions. Most of us at one time or another have or are on MTX...methotrexate.

I am on a mild form of it now for my psoriasis. Some take injections of the same

medication. I can only speak for myself and say, NO I have not experienced any

breathing problems because of it.

I must ask...where are you from Magnolia? Are you from Mississippi or the South

somewhere? I was transplanted to Michigan some 34 years ago from the Memphis, TN

area. Just curious...

Donna

Magnolia <magnoliauk@...> wrote: Hi folks just joined your discussion

group not sure if I am in the

right place but hope you can help. My brother in law is a life long

sufferer of Psoriasis and last year he was on some drug that is

usually used for cancer treatment ( I dont know the name of it) He

was rushed into hospital in January with breathing problems that are

now thought to be caused by taking the drug. They have put him on

Methotextrate (sorry not sure on spelling) Do any of you have any

experience of this drug and if so did it affect your breathing.

Sorry to invade such a sensitive group even though I am a non

sufferer it is in the family and I have every sympathy with you all.

Lynn

[Guest guest]

Magnolia <magnoliauk@...> wrote: Hi folks just joined your discussion

group not sure if I am in the

right place but hope you can help. My brother in law is a life long

sufferer of Psoriasis and last year he was on some drug that is

usually used for cancer treatment ( I dont know the name of it) He

was rushed into hospital in January with breathing problems that are

now thought to be caused by taking the drug. They have put him on

Methotextrate (sorry not sure on spelling) Do any of you have any

experience of this drug and if so did it affect your breathing.

Sorry to invade such a sensitive group even though I am a non

sufferer it is in the family and I have every sympathy with you all.

Lynn

[Guest guest]

> Hi folks just joined your discussion group not sure if I am in the

> right place but hope you can help. My brother in law is a life

long

> sufferer of Psoriasis and last year he was on some drug that is

> usually used for cancer treatment ( I dont know the name of it) He

> was rushed into hospital in January with breathing problems that

are

> now thought to be caused by taking the drug. They have put him on

> Methotextrate (sorry not sure on spelling) Do any of you have any

> experience of this drug and if so did it affect your breathing.

> Sorry to invade such a sensitive group even though I am a non

> sufferer it is in the family and I have every sympathy with you all.

>

> Lynn

Lynn: WELCOME to our group! Thank you for taking an interest in the

health of your brother-in-law. PA can be a pretty complex disease

and we rely on our family members to help us through each day.

There's a pretty good search option in this message board, so if you

need info on anything you can search for that term there. Otherwise,

post a message and we will be more than happy to help you understand

what's going on with your brother-in-law.

Again...Thank you for your interest, he's lucky to have family

members who are willing to reach out and learn more about this

disease.

[Guest guest]

> I must ask...where are you from Magnolia? Are you from Mississippi

or the South somewhere? I was transplanted to Michigan some 34 years

ago from the Memphis, TN area. Just curious...

> Donna

>

>

Hi Donna

Thanks for making me feel welcome. Until my brother in laws recent

flare up I didnt know psoriasis could be so debilitating and I feel

humbled by everyones kindness to me. I am not from the South of

anywhere and I would love to see the Mississippi:-) I am from

England. North in fact very near to York. The nearest town to me,

Selby, has a history with the Washington family ( that is) and

has a stained glass window in the abbey reputed to have been donated

by the said family. It may be a big pond but we are not that far

apart:-)

Lynn

[Moderator's note: Lynn - The town of Selby is in the South of " North-Yorkshire "

(the very southern tip as a matter of fact), and is south of Scotland! ;-) ha,

ha! - couldn't resist]

[Guest guest]

Welcome and your mom I hope someone here can help!

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

, abx help no matter how long you have had lyme or its

coinfections. Every spirochete killed is one less that can

replicate. the 'numb and tingly' is neuropathy. Has your mom been

tested for Babesiosis? Also have her bloodsugars checked for

diabetes. Neurontin can help greatly with the neuropathy. She would

not be a good candidate for Flagyl. Email me privately if you wish,

Lovey

> Hello,

>

> My mom was diagnosed in 1987 with Lyme Disease. She continues to

> have many problems. Every few days she " crashes " and literally

can't

> get off the couch. Her doctor is pretty much out of ideas. I know

> she takes a couple of medications daily, though I don't know off-

hand

> what they are. She just tries so hard to keep going and gets so

> frustrated when she can't. I know that when she has those down

days,

> her lets are numb and tingly. Is that a pretty normal side

effect?

> She will be going online in a couple of weeks (she's waiting on the

> disk). She doesn't know anyone with Lyme and I'm sure she would

> greatly benefit from talking with people who understand.

>

> I've read some of your previous messages about abx...is this

> something that could help her even though she's had Lyme for almost

> 15 years?

>

> Bruce

> Indianapolis, In

[Guest guest]

In a message dated 10/10/2001 1:33:08 AM Eastern Daylight Time,

satyab6@... writes:

<< The inflamation and swelling in her knees,and in

the last year her fingers has caused immense pain. She suffers neck

pain and headaches. We started an exercise program but this seemed to

worsen the pain. >>

Sue - You only mentioned she is on anti-inflammatories - those do nothing to

protect from joint damage - please talk to your rheumy about DMARDS and/or

Enbrel to help protect her joints as she is so young. Also, would it be out

of your price range to join a YMCA or other gym with a pool? Exercising in

water may be less painful.

Welcome to the group - I sure hope Katy feels better soon - I can't imagine

having this at such a young age! Hopefully, you'll be able to share some

info. from the posts with her and let her read them so she knows she's not

alone in this and that we will all try to help encourage and support her.

Take care,

[Guest guest]

Thankyou for your comments Tracey

We don't see the specialist for another 3 weeks and as

the diagnosis isn't 100% this is all they have given

her to take. Katy can't take tablets so that

complicates things a bit as well. I am giving her some

natural remedies such as Morinda(Noni) for her

headaches and MSM powder and colloidal minerals. The

Nurofen only takes the pain away for about ten minutes

so it really isn't a long term solution especially as

she takes only twice a day. I have also started her on

a wheat-free diet as the Naturopath said this is good

for reducing inflammation. We will try swimming in the

future but my daughter has put on 20 kgs in the last

year so is very self-concsious about her weight and

the bad stretch marks she is left with. I feel she

also suffers from Fibromyalgia(the Naturopath felt

this is what she had not arthritis but I don't think

he knew about PA as most of Katy's symptoms point to

PA)Katy has a lot of Muscular pain as well as joint

pain. Thankyou once again for your kind comments and

you take care too. Having shared my daughter's pain

and suffering for the last four years I really feel

for any one else with this condition.

Sue

--- TADEL630@... wrote:

> In a message dated 10/10/2001 1:33:08 AM Eastern

> Daylight Time,

> satyab6@... writes:

>

> << The inflamation and swelling in her knees,and in

> the last year her fingers has caused immense pain.

> She suffers neck

> pain and headaches. We started an exercise program

> but this seemed to

> worsen the pain. >>

> Sue - You only mentioned she is on

> anti-inflammatories - those do nothing to

> protect from joint damage - please talk to your

> rheumy about DMARDS and/or

> Enbrel to help protect her joints as she is so

> young. Also, would it be out

> of your price range to join a YMCA or other gym with

> a pool? Exercising in

> water may be less painful.

> Welcome to the group - I sure hope Katy feels better

> soon - I can't imagine

> having this at such a young age! Hopefully, you'll

> be able to share some

> info. from the posts with her and let her read them

> so she knows she's not

> alone in this and that we will all try to help

> encourage and support her.

> Take care,

>

>

>

__________________________________________________

[Guest guest]

In a message dated 10/18/2001 1:34:56 AM Eastern Daylight Time,

satyab6@... writes:

<< We will try swimming in the

future but my daughter has put on 20 kgs in the last

year so is very self-concsious about her weight and

the bad stretch marks she is left with. >>

Sue - having been very overweight since childhood, I can relate to this. But

if possible and you can find an arthritic water exercise class in your area,

it will be mainly senior citizens and if she's anything like me, she will be

less self-conscious in front of older adults than in front of kids or teens.

And tell her I for one know she's a beautiful girl inside and out

[Guest guest]

> Message: 4

> Date: Thu, 18 Oct 2001 11:42:38 EDT

> From: TADEL630@...

> Subject: Re: new member

>

> In a message dated 10/18/2001 1:34:56 AM Eastern Daylight Time,

> satyab6@... writes:

>

> << We will try swimming in the

> future but my daughter has put on 20 kgs in the last

> year so is very self-concsious about her weight and

> the bad stretch marks she is left with. >>

> Sue - having been very overweight since childhood, I can relate to this. But

> if possible and you can find an arthritic water exercise class in your area,

> it will be mainly senior citizens and if she's anything like me, she will be

> less self-conscious in front of older adults than in front of kids or teens.

> And tell her I for one know she's a beautiful girl inside and out

>

I'm with on this one. Although I have never really been overweight, I

suffered with severe body distortion problems (ie anorexia)as a teen and young

adult and could not bear to be seen in a swimsuit. When I discovered the aqua

exercises for older adults, it was such a relief. All the other participants

were over 55. They were all so sweet and concerned that I had arthritis at such

a young age. They were really lovely.

Another bit of info for your daughter if she is struggling with food and weight:

OA! Overeaters Anonymous really helped me get back my life. They use the same

program for anorexics as they use for people who are over weight. It's really

the same problem. I know this is somewhat off topic, but I pass it on beause the

arthritis is so much easier to bear if you aren't carrying extra weight. I

notice it now if I even gain a few pounds. And I know how much I suffered as a

teeneager, all that self-hatred is so painful. Although I am not involved with

OA anymore, I would be happy to be contacted if your daughter has questions.

Give her my love. my heart goes out to her.

barb

barblarson@...

[Guest guest]

In a message dated 11/09/2001 8:06:01 AM Eastern Standard Time,

Diannecourt@... writes:

<< I am concerned about the

side effects and would like to hear from anyone who is using methatrexate.

>>

Hi Dianne - I was on MTX for about 2 years. I had slightly elevated liver

enzymes a couple of times, but with reducing the MTX, they went back to

normal. I do feel that I didn't have a complete remission with MTX and my

rheumy agreed, so I'm now on enbrel and off the MTX. I had some nausea from

the oral so I injected. The injections are easy and don't hurt. There is a

TON of info. in previous posts about MTX. I think it's just like all our

other treatments, what works for some doesn't for others - the best thing to

do is find a rheumy you really like and trust and go with her/his advice.

Good luck,

[Guest guest]

Dianne -

Welcome aboard, sorry you're here;-)

I've been using the Methotrexate for nearly ten years now. Most of the side

effects have been controlled with a daily dose of folic acid. I have had to

reduce my beer consumption. It does take a while for the MTX to kick in, and

sometimes a long time to figure out just how much you need. Hang in there, it

may not be as bad as it sounds sometimes.

Rob Glover

<<Hi

my name is Dianne court

I was diagnosed with PA about 6 years ago and took sulphasalsine for many of

those years, stopping when I had chemotherapy for breast cancer. All the

arthritis cleared up for one and a half years, but it is now back with a

vengeance and the suphasalasine is not helping. I have been prescribed

methatrexate, and am due to start it tomorrow. I am concerned about the

side effects and would like to hear from anyone who is using methatrexate.

[Guest guest]

Hi Dianne

I took metatrexate for about two years. It worked well, but I had an adverse

reaction. I got flu like symptoms with a deep cough. The moment the Doctor took

me off it, the symptoms went away.

In addition to that they will want to give you blood tests every six weeks to

make sure there is no kidney damage.

I wish you well with it. Just listen to your body and

be careful

sincerely

Harold

[ ] new member

> <html><body>

> <tt>

> Hi<BR>

> my name is Dianne court<BR>

> <BR>

> I was diagnosed with PA about 6 years ago and took sulphasalsine for many of

<BR>

> those years, stopping when I had chemotherapy for breast cancer.  All the <BR>

> arthritis cleared up for one and a half years, but it is now back with a <BR>

> vengeance and the suphasalasine is not helping.  I have been prescribed <BR>

> methatrexate, and am due to start it tomorrow.  I am concerned about the <BR>

> side effects and would like to hear from anyone who is using methatrexate.<BR>

> <BR>

> _________________________________________________________________<BR>

> Get your FREE download of MSN Explorer at <a

href= " http://explorer.msn.com/intl.asp " >http://explorer.msn.com/intl.asp</a><BR>

> <BR>

> <BR>

> </tt>

>

>

> <br>

> <tt>

>

[Guest guest]

Dianne,

I have an MTX injection once a week, no upset stomach that way.

I have been on it for quite awhile now.

The only side effects I have noticed are sore dry eyes, and feeling a bit down

mentally just before it is due.

You need to have blood test at least monthly to keep an eye on your blood cells

and liver function.

My rheumatologist has told me that she has heard of people being on it for up to

10 years.

Its like any other drug you take, keep an eye out for side effects and report

them if they arise to your Doctor.

I know the drug leaflet looks awfull in regards to side effects but its the only

drug I have tried that has been any good.

Regards

[ ] new member

Hi

my name is Dianne court

I was diagnosed with PA about 6 years ago and took sulphasalsine for many of

those years, stopping when I had chemotherapy for breast cancer. All the

arthritis cleared up for one and a half years, but it is now back with a

vengeance and the suphasalasine is not helping. I have been prescribed

methatrexate, and am due to start it tomorrow. I am concerned about the

side effects and would like to hear from anyone who is using methatrexate.

_________________________________________________________________

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

[Guest guest]

MTX is working great for my husband. He seems to have the same problems as

you do and about the same age. The one thing that keeps him going is we

bought a hot tub and he gets up every morning and sits in it for a half hour

with his coffee. If its raining out-he can feel the difference in his joints

and movements all day. It has been a lifesaver.

Good luck to you...

Ellie -

Stars and Stripes Forever

[Guest guest]

Ken Nicholls wrote:

>

> Hello my name is Ken I live in Calgary, Canada. I've had Psoriasis since I

> was 11 years old. I'm now 42 yrs. old. The Psoriasis is only on my hands,

> feet knee's & elbows.

Hi Ken, and welcome. I got P about 10 years after you did (age 19) and

I'm 10 years older than you now, but other than that, sounds REAL

familiar! Although I did have a couple bad flares where I had P just

everywhere, but that was years ago.

> I was diagnosed with PA in Sept.2001 of this year after extreme pain in my

> hands starting in Feb.2001 It started off with swelling on my Hands and

> stiffness in the mornings. My family doctor put me on celibrex. Which did

> not do a dame thing.

<snip>I told him the celibrex was

> not working. He then put me on Vioxx

All that sounds familiar, too. The Celebrex sort of helped me (my PA's

mostly in my hands), or enough that I didn't go back to the rheumy.

> After waiting 6 months to see this rheumalogist he told me I have two

> options of medication the first being Methotrexate which I was not

> comfortable with finding out it is a drug originally designed to treat

> leukemia. The other option was Alti-Sulfasalazine.

I went to see 3 rheumies and they all basically wanted me on the MTX. I

just couldn't bring myself to go on it. One wanted me to try the

sulfasalazine and I didn't want that either -- so I didn't. Now, sigh,

I'm somewhat worse. Besides my hands lately I'm suspecting maybe my

shoulders but I don't really know. That's the trouble; it's so difficult

to tell for sure! I've been on the antibiotic protocol for this since

June and I'm afraid that's not working for me, yet, at any rate.

>It feels like I have

> damaged the ligaments in my knee.

It's very common with PA to have tendon involvement; I suppose ligaments

too. Last summer my left Achilles tendon bothered me, but that has since

resolved. In the three fingers on my hands that refuse to close into a

fist, it feels more like the tendons are balking, more than anything in

the joints. (That's not counting the whopper of an inflamed knuckle

joint that I also have, though -- but so far, I don't have any

involvement in knees etc.)

I hope you find the answers you wanted concerning the Vioxx and MTX;

each of us does seem to respond differently to different meds and

protocols. Which doesn't make this disease any easier to live with, does

it!

cordially,

Louise

[Guest guest]

Hello Louise,

You mentioned the inflammation in your knuckle and the joints in your hand!

The knuckle and middle finger on my right hand were a real problem also but

it seems Vioxx has controlled the swelling on my hands.

I can not make a tight fist at the best of times but in the mornings is when

the pain is the worst.

Thanks for your response

Ken N Calgary,AB

-----Original Message-----

Ken Nicholls wrote:

>

> Hello my name is Ken I live in Calgary, Canada. I've had Psoriasis since I

> was 11 years old. I'm now 42 yrs. old. The Psoriasis is only on my hands,

> feet knee's & elbows.

Hi Ken, and welcome. I got P about 10 years after you did (age 19) and

I'm 10 years older than you now, but other than that, sounds REAL

familiar! Although I did have a couple bad flares where I had P just

everywhere, but that was years ago.

> I was diagnosed with PA in Sept.2001 of this year after extreme pain in my

> hands starting in Feb.2001 It started off with swelling on my Hands and

> stiffness in the mornings. My family doctor put me on celibrex. Which did

> not do a dame thing.

<snip>I told him the celibrex was

> not working. He then put me on Vioxx

All that sounds familiar, too. The Celebrex sort of helped me (my PA's

mostly in my hands), or enough that I didn't go back to the rheumy.

> After waiting 6 months to see this rheumalogist he told me I have two

> options of medication the first being Methotrexate which I was not

> comfortable with finding out it is a drug originally designed to treat

> leukemia. The other option was Alti-Sulfasalazine.

I went to see 3 rheumies and they all basically wanted me on the MTX. I

just couldn't bring myself to go on it. One wanted me to try the

sulfasalazine and I didn't want that either -- so I didn't. Now, sigh,

I'm somewhat worse. Besides my hands lately I'm suspecting maybe my

shoulders but I don't really know. That's the trouble; it's so difficult

to tell for sure! I've been on the antibiotic protocol for this since

June and I'm afraid that's not working for me, yet, at any rate.

>It feels like I have

> damaged the ligaments in my knee.

It's very common with PA to have tendon involvement; I suppose ligaments

too. Last summer my left Achilles tendon bothered me, but that has since

resolved. In the three fingers on my hands that refuse to close into a

fist, it feels more like the tendons are balking, more than anything in

the joints. (That's not counting the whopper of an inflamed knuckle

joint that I also have, though -- but so far, I don't have any

involvement in knees etc.)

I hope you find the answers you wanted concerning the Vioxx and MTX;

each of us does seem to respond differently to different meds and

protocols. Which doesn't make this disease any easier to live with, does

it!

cordially,

Louise

[Guest guest]

Ken Nicholls wrote:

>

>

> You mentioned the inflammation in your knuckle and the joints in your hand!

> The knuckle and middle finger on my right hand were a real problem also but

> it seems Vioxx has controlled the swelling on my hands.

> I can not make a tight fist at the best of times but in the mornings is when

> the pain is the worst.

Ken,

That describes my situation exactly, to a T.

(Gee, maybe I should reconsider the Vioxx!) Or, maybe I should just go

back on the Celebrex while I'm taking the Minocin....right now I take 3

Aleve spaced out during a day along with the mino.

thx,

Louise

[Guest guest]

Dear Louise,

I just joined this chat site and came across an email that you had

sent to a 'Ken'. I found it very interesting, as well as all you

others that have contributed to this site. I don't really know where

to begin... but just reading all your messages has given me a bit of

comfort knowing that others 'unfortunately' know what I, myself, have

been going through for almost ten years now.

I am using my daughter's address, but may name is . I am

almost 44 and have been on almost every medication for PA... either

going off them because of side effects or simply because I felt the

side effects were far to dangerous to take a risk with.

I am an Occupational Therapist, only volunteer occasionally...I

suppose I am my own eternal patient, although that wasn't what I had

intended. I have been on Plaquenil (an anti-malarial, didn't help

and had possible side effect of visual loss), on Salazopyrine

(developed anemia with this), taken all kinds of NSAID's (work, but

am afraid of long term use and damage to the stomach), and 2 weeks

ago started with Methotrexate for the 4th time!! Each of the

previous tries ended up with severe bronchitis/pneumonia... as it

lowers the immune system.

My psoriasis is beginning to slow down in cell formation, but the

joints still seem the same. The first joint ever affected was my

ring finger of the left hand... suddenly, while on a vacation with my

family... I thought it must have been from a spider bite or

something. It took at least 18 months to be properly diagnosed, as

the psoriasis began to appear at the same time as the swollen

finger. Even as an Occupational Therapist I had never heard of

Psoriatic Arthritis before this!

Through the years the joints affected have been right wrist, both

ring fingers, right thumb, left elbow tendon, sternum (breast bone),

front of ribs, upper neck, right shoulder (probably due to carrying 4

babies through the years...fun), right collar bone (clavicle), and

now several of my right ribs. My left hip has bothered me off and on

through the years... but most irritating of all has been the feet...

people don't realize how much we're affected when we can't move

around comfortably without pain. Even comfortable shoes don't

conSOLE me (ha, bit of humor). I have been through many, many

DEMedrol (cortisone) injections in various toes and fingers just to

reduce the swelling and lessen the pain. But these injections over

time are destructive to the joints, it is so frustrating.

I feel I live between my internist, my 2 Rheumatologist's (who both

have insisted on Methotrexate), the laboratory (for monthly lab

tests), and the Orthopedist. Most of my friends feel with me, but I

feel so frustrated at times that people can't SEE the pain we live

with daily (I often wish there were a thermometer to measure pain so

I could think to myself... no wonder you feel so achy). My husband

is very understanding, but even that doesn't lessen the pain or the

frustration. I look so healthy, use to be very sporty and active,

now I dream of just being able to walk without damaging my joints

further. Even Yoga is painful.

Well, this turned out to be longer than I had intended, sorry. I

hope to continue reading from the chat site. Thanks for your

contribution, I am glad to have found this site. Have a happy

holiday.

Sincerely,

> >

> > Hello my name is Ken I live in Calgary, Canada. I've had

Psoriasis since I

> > was 11 years old. I'm now 42 yrs. old. The Psoriasis is only on

my hands,

> > feet knee's & elbows.

>

> Hi Ken, and welcome. I got P about 10 years after you did (age 19)

and

> I'm 10 years older than you now, but other than that, sounds REAL

> familiar! Although I did have a couple bad flares where I had P just

> everywhere, but that was years ago.

>

> > I was diagnosed with PA in Sept.2001 of this year after extreme

pain in my

> > hands starting in Feb.2001 It started off with swelling on my

Hands and

> > stiffness in the mornings. My family doctor put me on celibrex.

Which did

> > not do a dame thing.

> <snip>I told him the celibrex was

> > not working. He then put me on Vioxx

>

> All that sounds familiar, too. The Celebrex sort of helped me (my

PA's

> mostly in my hands), or enough that I didn't go back to the rheumy.

>

> > After waiting 6 months to see this rheumalogist he told me I have

two

> > options of medication the first being Methotrexate which I was not

> > comfortable with finding out it is a drug originally designed to

treat

> > leukemia. The other option was Alti-Sulfasalazine.

>

> I went to see 3 rheumies and they all basically wanted me on the

MTX. I

> just couldn't bring myself to go on it. One wanted me to try the

> sulfasalazine and I didn't want that either -- so I didn't. Now,

sigh,

> I'm somewhat worse. Besides my hands lately I'm suspecting maybe my

> shoulders but I don't really know. That's the trouble; it's so

difficult

> to tell for sure! I've been on the antibiotic protocol for this

since

> June and I'm afraid that's not working for me, yet, at any rate.

>

> >It feels like I have

> > damaged the ligaments in my knee.

>

> It's very common with PA to have tendon involvement; I suppose

ligaments

> too. Last summer my left Achilles tendon bothered me, but that has

since

> resolved. In the three fingers on my hands that refuse to close

into a

> fist, it feels more like the tendons are balking, more than

anything in

> the joints. (That's not counting the whopper of an inflamed knuckle

> joint that I also have, though -- but so far, I don't have any

> involvement in knees etc.)

>

> I hope you find the answers you wanted concerning the Vioxx and MTX;

> each of us does seem to respond differently to different meds and

> protocols. Which doesn't make this disease any easier to live with,

does

> it!

>

> cordially,

> Louise

[Guest guest]

,

Welcome to the group. Have you tried Enbrel injections yet? Many have

had good luck with them so far. Just curious, why are you in Jordan? I

would not want to be out of the states right now. My husband wonders what

my obsession is with shoes, I tell him " when your feet hurt all the time you

are always searching for the miracle shoe " .

Again, welcome.

Rae

[ ] Re: New Member

> Dear Louise,

>

> I just joined this chat site and came across an email that you had

> sent to a 'Ken'. I found it very interesting, as well as all you

> others that have contributed to this site. I don't really know where

> to begin... but just reading all your messages has given me a bit of

> comfort knowing that others 'unfortunately' know what I, myself, have

> been going through for almost ten years now.

>

> I am using my daughter's address, but may name is . I am

> almost 44 and have been on almost every medication for PA... either

> going off them because of side effects or simply because I felt the

> side effects were far to dangerous to take a risk with.

>

> I am an Occupational Therapist, only volunteer occasionally...I

> suppose I am my own eternal patient, although that wasn't what I had

> intended. I have been on Plaquenil (an anti-malarial, didn't help

> and had possible side effect of visual loss), on Salazopyrine

> (developed anemia with this), taken all kinds of NSAID's (work, but

> am afraid of long term use and damage to the stomach), and 2 weeks

> ago started with Methotrexate for the 4th time!! Each of the

> previous tries ended up with severe bronchitis/pneumonia... as it

> lowers the immune system.

>

>

> My psoriasis is beginning to slow down in cell formation, but the

> joints still seem the same. The first joint ever affected was my

> ring finger of the left hand... suddenly, while on a vacation with my

> family... I thought it must have been from a spider bite or

> something. It took at least 18 months to be properly diagnosed, as

> the psoriasis began to appear at the same time as the swollen

> finger. Even as an Occupational Therapist I had never heard of

> Psoriatic Arthritis before this!

>

> Through the years the joints affected have been right wrist, both

> ring fingers, right thumb, left elbow tendon, sternum (breast bone),

> front of ribs, upper neck, right shoulder (probably due to carrying 4

> babies through the years...fun), right collar bone (clavicle), and

> now several of my right ribs. My left hip has bothered me off and on

> through the years... but most irritating of all has been the feet...

> people don't realize how much we're affected when we can't move

> around comfortably without pain. Even comfortable shoes don't

> conSOLE me (ha, bit of humor). I have been through many, many

> DEMedrol (cortisone) injections in various toes and fingers just to

> reduce the swelling and lessen the pain. But these injections over

> time are destructive to the joints, it is so frustrating.

>

> I feel I live between my internist, my 2 Rheumatologist's (who both

> have insisted on Methotrexate), the laboratory (for monthly lab

> tests), and the Orthopedist. Most of my friends feel with me, but I

> feel so frustrated at times that people can't SEE the pain we live

> with daily (I often wish there were a thermometer to measure pain so

> I could think to myself... no wonder you feel so achy). My husband

> is very understanding, but even that doesn't lessen the pain or the

> frustration. I look so healthy, use to be very sporty and active,

> now I dream of just being able to walk without damaging my joints

> further. Even Yoga is painful.

>

> Well, this turned out to be longer than I had intended, sorry. I

> hope to continue reading from the chat site. Thanks for your

> contribution, I am glad to have found this site. Have a happy

> holiday.

>

> Sincerely,

>

>

>

> > >

> > > Hello my name is Ken I live in Calgary, Canada. I've had

> Psoriasis since I

> > > was 11 years old. I'm now 42 yrs. old. The Psoriasis is only on

> my hands,

> > > feet knee's & elbows.

> >

> > Hi Ken, and welcome. I got P about 10 years after you did (age 19)

> and

> > I'm 10 years older than you now, but other than that, sounds REAL

> > familiar! Although I did have a couple bad flares where I had P just

> > everywhere, but that was years ago.

> >

> > > I was diagnosed with PA in Sept.2001 of this year after extreme

> pain in my

> > > hands starting in Feb.2001 It started off with swelling on my

> Hands and

> > > stiffness in the mornings. My family doctor put me on celibrex.

> Which did

> > > not do a dame thing.

> > <snip>I told him the celibrex was

> > > not working. He then put me on Vioxx

> >

> > All that sounds familiar, too. The Celebrex sort of helped me (my

> PA's

> > mostly in my hands), or enough that I didn't go back to the rheumy.

> >

> > > After waiting 6 months to see this rheumalogist he told me I have

> two

> > > options of medication the first being Methotrexate which I was not

> > > comfortable with finding out it is a drug originally designed to

> treat

> > > leukemia. The other option was Alti-Sulfasalazine.

> >

> > I went to see 3 rheumies and they all basically wanted me on the

> MTX. I

> > just couldn't bring myself to go on it. One wanted me to try the

> > sulfasalazine and I didn't want that either -- so I didn't. Now,

> sigh,

> > I'm somewhat worse. Besides my hands lately I'm suspecting maybe my

> > shoulders but I don't really know. That's the trouble; it's so

> difficult

> > to tell for sure! I've been on the antibiotic protocol for this

> since

> > June and I'm afraid that's not working for me, yet, at any rate.

> >

> > >It feels like I have

> > > damaged the ligaments in my knee.

> >

> > It's very common with PA to have tendon involvement; I suppose

> ligaments

> > too. Last summer my left Achilles tendon bothered me, but that has

> since

> > resolved. In the three fingers on my hands that refuse to close

> into a

> > fist, it feels more like the tendons are balking, more than

> anything in

> > the joints. (That's not counting the whopper of an inflamed knuckle

> > joint that I also have, though -- but so far, I don't have any

> > involvement in knees etc.)

> >

> > I hope you find the answers you wanted concerning the Vioxx and MTX;

> > each of us does seem to respond differently to different meds and

> > protocols. Which doesn't make this disease any easier to live with,

> does

> > it!

> >

> > cordially,

> > Louise

>

>

>

>

[Guest guest]

-Dear Ann,

I am a new member as well, so welcome. I have already responded to

previous messages and sent others. You can look up previous messages

under my site address ranoush84@... ....this is my daughter's

address, my name is and I am almost 44. I have 4 kids, ages 13

to 19 years old, one in university. My major suggestion for you is

not to do what I did... I had refused for many years to accept any

help from anyone, trying to do everything myself. Your children are

young and you need to conserve your energy and protect your joints

from further stress and damage. So, don't carry the younger one when

you don't have to... let others help you out. Being a mom is a full-

time job and smaller children take more physical energy from us than

the grown up kids... then they zap us psychologically and

financially, ha. Good luck and welcome to this site, I am so happy

to have found it.

-- In @y..., " annmleclere " <leclere@n...> wrote:

> Hello everyone,

>

> My name is Ann and I am 41yrs old. I live in Indiana with my

husband

> and two children one 7yrs old and my youngest is 7months old.

>

> I have had Psoriasis since I was 19yrs old, but didn't have it

> diagnosed until I was 35. My Psoriasis has progressed with each of

> my pregnancies. In the beginning I just had a little on my scalp.

> When I became pregnant the first time I began having lesions on my

> elbows and chest. With my second pregnancy the lesions progressed

to

> my face, back, right knee, stomach, and hands. Over the years I

> noticed that my joints were getting sore. They would flare up then

I

> would feel better. (I just thought I was getting old) After my

son

> was born (7mos ago) My right shoulder, left knee, and left thumb

and

> wrist was extremely stiff. It was hard to pick up my baby in the

> middle of the night or in the mornings. I told my Dermatologist

> about the pain and he referred me to a Rhum. (He was the one that

> diagnososed me with PA. I am still getting use to the idea of

having

> PA. I have my good days and my bad days. So far I have been

> controlling the discomfort with NSAIDs. But my stomach is starting

> to give me trouble so I am being switched to another medication.

(I

> don't know what yet)

>

> Anyway, this is me, I am so glad to have found this website, it

is

> comforting to know that I am not the only one and to be able to

read

> how other people are dealing with things.

>

> Sincerely,

> Ann L

[Guest guest]

have you ever had any root canals done to your teeth? this is where all of my problems stem from that, and some mercury fillings.

let me know,

jay

-----Original Message-----From: keddielee@... [mailto:keddielee@...]Sent: Wednesday, December 19, 2001 9:53 PMDr Subject: New MemberDear GroupWell, I have had alot of problems for about 20 years. I have been unableto work for 15of those years. My main diagnosisis have been candida, CFS, MCS, with amyriad of symotoms to match. My worst symptoms at present includeseveresallergies to chemical odors, neurological problems, dysbiosis, fatigue,severe joint pain, and ongoing pnuemonia. I also experience heartpalpitations intermittantly and lately a tightness in my chest. I wasfound to have a parasite called blastocystis hominis frrm a CSDA ( GreatSmokies)about 3 years ago and have not had any luck eradicating it or mysymptoms with various diets, supplements, or herbs ( I was seeing anutritionist who I recently gave up on :-). . I am getting pretty desperate to find out if this parasite is the rootof my problems.I can see I need all the flushes just by symptoms and knowing I have colon, kidney and liver problems and havehad for years. I am joining this group in hopes of guidance and support.I have alot of experience with CFS ad MCS, but not with parasites. Irecently bought a zapper, but I have not been using it very long. Anyhelp would be appreciated.Keddie

[Guest guest]

Hello,

I am also on MTX but have not been so for as long as you have.

I have tried Arava in the past, but I had no results with it, my

Rheumatologist tried it because I am on warfrin and there are a lot of drugs

incompatible with the warfrin.

This drug,Arava, is apparently more for the use in treating Rheumatoid

Arthritis. The only side effects I had was hair loss.

Its up to you but there have been people wih PA who have benifited by taking

it.

Give it a go and good luck.

[ ] New Member

Happy New Year to All!

I have had PA for about 17 years. I have taken several drugs down

through the years. I have been on Methotrexate for about 10 years.

This past year it has stopped helping me. My doctor wants to change

to to Arava. I would like info from any of you that have been on

Arava.

[Guest guest]

In response to your inquery about PA and arava, I started taking arava (20

mg.) together with vioxx (25 mg. 2 times a day) in June 2001 with immediate

positive results over next year. I lost the 50 pounds I had gained while on

methotrexate and prednisone for previous 5 years and felt better--was more

active--than I had been in years. In Fall of 2001 I developed problems with

feet and wrists/hands swelling and was placed on MTX and prednisone again in

additon to arava (dosage reduced to 10 mg. a day) and vioxx. This

combination caused serious side effects and as a result before Christmas my

rheumatologist agreed to me stopping MTX and prednisone and going back to 20

mg. arava together with vioxx. Referred to orthopedist who administered

cortizone shots in right wrist and right foot and now I am so much better.

Hope this isn't more than you wanted to know! Looking back to this past

Fall I think emotional stress had a lot to do with increased symtoms of

PA--both 9/11 and my difficulty in accepting the worsening of symptoms of

illness (Alzheimer's) of my father-in-law. Good luck with your choice of

treatment for PA.

[ ] New Member

[Guest guest]

Hi there momquixote,

I don't know if you meant to be funny, but you remind me of me. (Older, whiny,

menopause, bad attitude, etc.) *Grin*

It sounds like you definitely need more antibiotics as one moth isn't nearly

enough. The first thing I would do is find a Lyme literate doctor. If you

don't know one, let us know where you are and someone will send you names of

good docs in your area.

Your attitude is great though and that's a BIG part of the Lyme battle. I've

always said I wouldn't feel as good as I do if I didn't have a good attitude.

Keep smiling and keep posting ... we'll be here to help in any way we can.

Jean

(Texas)