Re: PA

[Guest guest]

Joe,

What are gold salts? When I was first diagnosed I was taking gold in a

capsule form. Is this the same thing? It took a long time for it to

kick in and when it did, the relief was not very much.

Hang in there. Eventually, you find something that will help. Are you

also talking any type of NSAID? Ask your RD if you are not, it might

take the edge off the pain.

Welcome to the group and take care.

[Guest guest]

Hello all,

I just joined. I'm also a PA sufferer, i had it now two years. It started

in my left index finger, then my neck, back, feet. I've tried numerous creams

for the psoriasis, and alot of different NSAIDS for the inflamation. I was on

azulfadine for a while...with no luck. I'm on 300mg. of cyclosporine...i've

been on it 14 months now, it's keeping the arthritis at bay....but i still

have to take Daypro as well.

I like this onelist e-mail, looking forward to talking to you all.

carole

[Guest guest]

Carole,

Welcome to the group!!!!!!!!!!!!

[Guest guest]

Hi Carole and Welcome,

You are now at least the forth person to have the PA start in an index finger!

Mine was my right one!

Trish

[Guest guest]

Hi Shayne and welcome to the group!

Although it is very scary to take an immunosupressant at first, if you take

good care of yourself and feel really confident in your doc, you should be

fine.

I can't stress enough that in my own experience a rheumatologist at a major

teaching hospital can do a world of good.

My own experience with Metho is that it was very important to take 1 mg of

Folic Acid a day (not the day of the metho-since Folic Acid negates the

action of the metho). Also watch out for side effects like headache,

fatigue- that day after bleary feeling, nausea and vomiting, mouth sores,

etc... Usually just increasing the dose of Folic Acid - some take up to 5 mg

a day to keep the side effects at bay, or asking the doc for a prescription

for an anti-nausea med like Zofran or Kytril (insist on them - they are the

best!). Timing your dose for supper - on a full stomach with the pills

especially, so you can sleep off the severe day after fatigue and resultant

foggy brain is a great idea. I try to take it on a Friday and sleep in late

on Saturday, for instance.

You definitely sound like you need to stop the progression of the disease

before joint damage occurs- and the meds like Naprosyn that you are on now

will not do it. If the pain is really bad, do not be afraid to ask for

stronger stuff. If you have no trouble with ulcers, perhaps something like

Voltaren or Toradol would work. If you do, there is OxyContin and MSContin -

;long acting forms (8-12 hours) of Codeine and Morphine respectively. I have

even had to use a Duragesic pain patch at times.

Quality of life is so important- don't suffer in silence.

I'll get off my soap box now,

[Guest guest]

Welcome ,

You have not depressed anyone- please always feel free to vent and share

everything with us about your PA and how it effects your life.

Welcome again!

[Guest guest]

I would appreciate receiving this information too for my friend.

rheumatic PA

>From: Gwen Armstrong <armstrog@...>

>

>Hi group

>I need some help. Just had a relative diagnosed with Psoriatic Arthritis

and am not to

>familiar with it. I've been concentrating on RA as that is my diagnosis.

>Can anyone give me some good links for info?

>thanks in advance

>Gwen

>

>>

[Guest guest]

I was asked by a friend last week for this info also! They wanted to know

what antibiotics are used and how often.

Thanks,

C

At 09:12 AM 12/12/99 -0500, you wrote:

>From: " Ken and " <kglg@...>

>

>I would appreciate receiving this information too for my friend.

>

>

> rheumatic PA

>

>

>>From: Gwen Armstrong <armstrog@...>

>>

>>Hi group

>>I need some help. Just had a relative diagnosed with Psoriatic Arthritis

>and am not to

>>familiar with it. I've been concentrating on RA as that is my diagnosis.

>>Can anyone give me some good links for info?

>>thanks in advance

>>Gwen

>>

>>>

>

>>

[Guest guest]

Dear Gwen,

Psoriatic arthritis can be treated with the antibiotics and other supportive

therapies in the same way as for RA. There's a description of PS on our web site

in rheumatic.org/primer.htm.

Chris.

Hi group

I need some help. Just had a relative diagnosed with Psoriatic Arthritis and am

not to

familiar with it. I've been concentrating on RA as that is my diagnosis.

Can anyone give me some good links for info?

thanks in advance

Gwen

[Guest guest]

Sorry - finger trouble. There's a description of PA (not PS) at

rheumatic.org/primer.htm.

Chris.

From: Gwen Armstrong <armstrog@...>

Hi group

I need some help. Just had a relative diagnosed with Psoriatic Arthritis and am

not to

familiar with it. I've been concentrating on RA as that is my diagnosis.

Can anyone give me some good links for info?

thanks in advance

Gwen

[Guest guest]

I have PA and have been on the 200mg MWF of Minocin since Jan. '98 (8

months of that time of Erthromyicin instead of the Minocin). It is slow but

I am better than when I started.

janet in tulsa

----------

> From: M Carroll <LCARROLL@...>

> Ken and <kglg@...>

> Cc: rheumaticonelist

> Subject: Re: rheumatic PA

> Date: Sunday, December 12, 1999 11:33 AM

>

> From: M Carroll <LCARROLL@...>

>

> I was asked by a friend last week for this info also! They wanted to know

> what antibiotics are used and how often.

> Thanks,

> C

>

>

>

>

>

>

> At 09:12 AM 12/12/99 -0500, you wrote:

> >From: " Ken and " <kglg@...>

> >

> >I would appreciate receiving this information too for my friend.

> >

> >

> > rheumatic PA

> >

> >

> >>From: Gwen Armstrong <armstrog@...>

> >>

> >>Hi group

> >>I need some help. Just had a relative diagnosed with Psoriatic

Arthritis

> >and am not to

> >>familiar with it. I've been concentrating on RA as that is my

diagnosis.

> >>Can anyone give me some good links for info?

> >>thanks in advance

> >>Gwen

> >>

> >>>

> >

> >>

>

>

[Guest guest]

Katrina...I am so sorry for what you are going through. Is there some type

of government assistance that you qualify for? I am sure medical bills are

impossible to pay for if you are going to have to pay for them out-of-pocket.

Please call and see if you can get some kind of assistance from your local

government. Maybe someone else here on the list that has been through this

can offer some concrete information about how to start the search.

Wish I could help,

Annette

[Guest guest]

Katrina-

I'm sorry to hear about your current condition. The only ins. I have is

thru the vetrans admin. which is not that great. I was just diagosed with pa

recently also. I know all to weel the emotions you are feeling. I have the

same problems walking. I am 29 yrs old, and to be walking around like a 90

year old is sooo depressing. I was recently put on mtx and it seems to make

it a little better. The indocin did nothing for me either. All I can say is

what ithers have said to me in my times of depression. Your not alone and

know that you can vent here anytime. Good luck

[Guest guest]

From: Katrina

<< I was just wanting to say that I feel terrible. I am 25 and can't

do anything that I could 1 and a half months ago....>>

Katrina,

I am so sorry to hear about how difficult it is for you. I don't have any

suggestions on the insurance problem although I encourage you to look for

help anywhere you can find it. Start with the United Way!

I did think of some ideas of things you could do to make things easier and

relieve your pain some that don't cost any money. Here they are:

1. Put a folded towel on top of a counter or table for changing the baby.

That way you don't have to get up and down off the floor.

2. Take a hot bath every night after the kids are in bed. This always

relieves the pain some and helps me sleep.

3. Do some simple stretching exercises (that don't cause pain). When your

joints are in pain you will tense your muscles from the stress which only

increases the pain. Stretching also helps keep the blood flow going.

4. Ask for help. I found this very hard but once I started it eased me so

much. Not only did the helpful tasks relieve my burden, but suddenly I KNEW

I wasn't alone. Maybe someone can carpool your son to school in the morning

when you are in pain and you can carpool the kids home in the afternoon when

you are feeling better.

5. Borrow a touching movie from the Library and have yourself a good cry.

You need to get it out!

6. Start a Gratefulness Journal on a few pieces of spare paper. Every night

just write down 5 things you are grateful for that day.

Hope this helps,

[Guest guest]

Thank you for replying to My self pity message...HAHA

i am really grateful for having this list to bring me ideas and just for

being there like you have just now been for me.

I did get into see a Rhue. today... She started me on Predisone... just 3

tabs of 20 mg a piece for 5 days then 2 for 5 days then 1 for 5 days then a

half for 5 days then I go see her again.... SHe was SOOOO COOL,

she wasnt even like a doctor. She wore jeans and a sweater....made me really

feel like I wasnt alone and she could help me get through this. She didnt

make me pay a PENNY..... Of course she wil bill me But at least she got me

in to help me and she also signed me up for the free services that the

county has... She handles ALL the rhue. doctor needs!!

I dont know what is going to happen after the predisone...

I am going to keep my hopes up and think that it is going to all just go

away.

I also have it on my skin... she said it will go away with the predisone

BUT it will come back again... But I can guarantee I am going to be lathered

UP to my neck in Moisturizer Forever...

Thanks for the email and you can email me you like ... Thanks So much

Katrina

[Guest guest]

Hi I went thru what you are going thru. I am 44 and my PA started at

twenty... by the time I was 35 I had had two artificial joints and three

fusions all in my fingers.... the one on my right middle finger lasted for

nine years... and now the stuff they use is better. Finally I had it fused

since it broke. and then the one one my left middle bottom joint had do be

redone twice..

But I still prefer artificial than fused.... It gives you more motion. I am

now fighting artificial joint in my knee. Ortho guy wants to do a partial.

And Rhumey says to wait.

I have just been approved for Enbrel. So I will try that first.

Also, synvisk really really good. All the new stuff is soooo expensive.

I just want to tell everyone that THE RHUEMY'S in INDIANAPOLIS are the best

around. THEY truely care. And are top notch in their field. TO bad there is

not an award for the best!

Janet

[Guest guest]

Hi Janet,

Thanx for contacting me. Its nice to know I'm alone. Like you I have had

fusion and false joints. However, on my left hand they replaced 3 joints

and fuse the top of the fingers, then realised that the original dr had

apparently put in little finger artificial joint lopsided, which meant the

finger was extremely painful and just flopped about - nice. Ha!

Anyhow, the new consultant I am seeing, who is doing the op on my right hand

soon, had to remove the artifical joint in the little finger to make it more

comfortable so now I am missing about an inch of my little finger and this

has now had to be fused, which isn't the best news as my job relys upon my

speed on a computer.

I do however have more faith in the new consultant and hope all goes well

with the right hand - there apparently 2 fingers will be artificial joints

and the other 2 completely fused - well at least they will look semi-normal

- thats something.

With regards to your knee, I was wondering if it keeps collapsing on you,

and then u have to be on crutches for a week or so, the pain is unbearable.

My left knee has been doing this on and off now for about 3 yrs, its hell,

can't drive, work or anything, but i have been told it is the cartlidge as

well as the arthritis, and like u mite need a artificial knee - I was

wondering if there is anything u do to ease the pain or stop it from

collapsing constantly. I really do not want to become the woman who is made

of artificial bones.

My husband has been a tower of strength, I don't know wot I would do without

him.

Its so nice to speak to someone who knows wot this is like.

Thanx for listening.

Regards

Shell

>From: " Janet Craig " <jlcraig@...>

>Reply-

>< >

>Subject: RE: [ ] PA

>Date: Mon, 16 Jul 2001 20:59:07 -0700

>

>Hi I went thru what you are going thru. I am 44 and my PA started at

>twenty... by the time I was 35 I had had two artificial joints and three

>fusions all in my fingers.... the one on my right middle finger lasted for

>nine years... and now the stuff they use is better. Finally I had it fused

>since it broke. and then the one one my left middle bottom joint had do be

>redone twice..

>

>But I still prefer artificial than fused.... It gives you more motion. I

>am

>now fighting artificial joint in my knee. Ortho guy wants to do a partial.

>And Rhumey says to wait.

>

>I have just been approved for Enbrel. So I will try that first.

>

>Also, synvisk really really good. All the new stuff is soooo expensive.

>

>I just want to tell everyone that THE RHUEMY'S in INDIANAPOLIS are the best

>around. THEY truely care. And are top notch in their field. TO bad there

>is

>not an award for the best!

>

>Janet

>

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

> I just want to tell everyone that THE RHUEMY'S in INDIANAPOLIS are

the best around. THEY truely care. And are top notch in their field.

TO bad there is not an award for the best!

Janet<

Hey Janet, I second that motion! Indy rhuemy's RULE! lol

I've said it before, but it bears repeating, I LOVE MY DOC'S!

[Guest guest]

<<P>Hi Pat,</P>

<P>On the subject of cortisone injections - sometimes

they help and sometimes they don't.  I am sorry

about your terrific pain.  I litterally feel for

you. I have a lot of trouble with my hips, but right

now my knees hurt so bad I can hardly get up from a

chair.  When walking my knees feel like they

could give out at any time.  Both are swollen and

I have a suspicion I will end up having them both

drained.  Have you ever  had this

done?  I have had it done 3 or 4 times.  It

sounds terrible but I found the pain in the knee joint

is so bad you barely feel the needle enter your

knee.</P>

<P>What do you take for pain.  At present I am

taking oxycontin.  While it is a strong pain

reliever, I don't get much relief from taking

it.  I am off my methotrexate for now as it

bothers my gums and my teeth get loose when I am

taking it.  Mtx has helped the psoriasis but

doesn't seem to do much for the PA.  In fact, my

rheumy was such a jerk the last couple of times I saw

her, I stopped going a few months ago.I still see my

primary care physician, a neurologist, ophthalmologist

for the iritis, and a psychologist who specializes in

the care of people with chronic pain.</P>

<P>I feel pretty worthless these days as I am either

in too much pain or too tired to accomplish

much.  My house could use a good cleaning but I

am so slow at getting anything done that it takes me

an entire day just to do one room and even then I am

not completely satisfied with what it looks like. Then

after I spend all that time, with several breaks, I

pay for it for the next couple of days. </P>

<P>The thing that bothers me the most is my siblings,

except for one, don't think I am in that bad a

shape.  They think I am making a mountain out of

a molehill.  Now what would I get from this?

Certainly nothing from them so why would I fake

it.  I have nothing to gain from it. I have told

them you don't get social security disability for

nothing.  I have read posts where other people

have the same problem with family and friends. 

Does anyone know why this happens?  I have given

up on one sister and brother and would rather not even

be around them because of their attitudes.</P>

<P>Sorry about the rambling, Pat, but I just had to

get some of this off my chest as it is really

bothering me.  The pain, the feelings of

exhaustion, the betrayal from my family are all really

bothering me right now.  I know this will

pass.  Thank God I have a loving and

understanding husband.  </P>

<P>Thanks for letting me rant about my problems. 

I would be glad to listen to you too.</P>

<P>Thanks,<BR>Shirley from Portsmouth, Virginia</P>

__________________________________________________

[Guest guest]

I am having pain in my hips, and knees.

I do not have any swelling though.

I have just began seeing this Dr. He has not put me on

methotrexate. I am taking Azulfadine. I have been on

it for about a month now. Not really seeming to do

anything. I have tried Celibrex, and Viox no help

there either.

I hope you get better.

[Guest guest]

pa_comply/

> Hello listers,

>

> I am currently looking

[Guest guest]

Lee Ann - I would think that even Medicaid has some sort of appeals process.

You really need to have your case managed by a rheumy. I would beg and plead

until they let you see one on a regular basis. Maybe at the very least you

can have your primary consult with a rheumy on a regular basis.

Good luck,

[Guest guest]

Hi Leanne,

I'm sorry to hear about your pain & problems you've been having with

PA & medicaid!

In your posting you wrote: " ...I DO know from research that if I had

Celebrex (which Medicaid will NOT pay for in Oklahoma--a state in

financial crisis), it would at least SLOW DOWN the destruction

process. "

I've been told that Celebrex and other NSAID type drugs don't stop or

slow the destruction process in any significant way. My

understanding is that it's necessary to take DMARDs (disease

modifying drugs) such as Sulfasalazine, MTX, enbrel, etc in order to

slow the destruction. Maybe others in the group have more insight

on this point...

Sharon

[Guest guest]

Yep, you're correct. Nsaids just sugar coat the pain, maybe releive it. You

need the disease modifying drugs to stop the progression. At least that's what

my doc told me =)

[ ] Re: PA

Hi Leanne,

I'm sorry to hear about your pain & problems you've been having with

PA & medicaid!

In your posting you wrote: " ...I DO know from research that if I had

Celebrex (which Medicaid will NOT pay for in Oklahoma--a state in

financial crisis), it would at least SLOW DOWN the destruction

process. "

I've been told that Celebrex and other NSAID type drugs don't stop or

slow the destruction process in any significant way. My

understanding is that it's necessary to take DMARDs (disease

modifying drugs) such as Sulfasalazine, MTX, enbrel, etc in order to

slow the destruction. Maybe others in the group have more insight

on this point...

Sharon

[Guest guest]

In a message dated 01/02/2003 1:07:11 PM Eastern Standard Time,

sjssjs00@... writes:

> I've been told that Celebrex and other NSAID type drugs don't stop or

> slow the destruction process in any significant way. My

> understanding is that it's necessary to take DMARDs

My understanding as well - NSAID's take down inflammation, but don't protect

the joint.