Re: Newcomer Story

[Guest guest]

Allan, welcome! I hope you find the correct combination of meds to help.

But concerning your question about remission.....I do not know this for a

fact but the son of a friend of my mother claims he has PA and used the

antibiotic therapy (pills only not the intravenous) and has no symptoms. I

don't know the man so I cannot say for sure how I feel about his testimony.

He wasn't selling anything and had nothing at all to gain from telling me

about his experience. I have no real reason to doubt him but at this time I

feel too overwhelmed by the whole thing to jump wholeheartedly into it. I

neither discount or advocate that approach but you did ask if anyone knew

anyone....

Good Luck, Cheri

[Ed. Note: Yes, antibiotic therapy usually works great for people who have no

symptoms of PA! ;-) Ron]

[Guest guest]

Hi Allan Youre right in saying that PA has wide and varied affects that are

fairly unique to an individual. This disease can be scary and frustrating but

dont panic. Just treat the symptoms as they come. There is usually a

definable pattern to a persons symptoms that can be identified. Several

things about your description caught my attention. One that it started with

a stubbed (broken?) toe and most affected joints have been previously

injured, two, that you are experiencing notable body temperature

fluctuation swings and 4 evening fatigue.

Whatever medications you are on could have effects on the fatigue as can the

arthritis itself if it is bad enough and may be compounded by insufficient

quality sleep that may be result of pain, but the disruption to body

temperature is a bit unusual and suggestive of some chronic infection. Can

you explain you body temp in a bit more detail for us? I'm sure that being a

marathon runner you have a high endurance so for you to become fatigued from

routine daily activities shows there is something serious happening.

Since you are on Cyclosporine I am inclined to blame your chronic infections

on that and possibly the fatigue as an effect of the subsequent infections

resulting from an intentionally subdueing your immune system. Cyclosporine is

an immune supressing drug that was originally used to prevent a recipients

body from rejecting a transplanted organ though it can be helpful in

moderating autoimmune responses. Methotrexate may have been the culprit on

mouth and throat sores and can definately cause fatigue. Again MTX works by

pounding your immune system so that it doesnt have enough resources to attack

self. I'm not studied on Sulfasalazine and in the course of preparing to

answer to that I came across this web page that some of you may find

interesting, take note of folic acid. <A

HREF= " http://www.mycustompak.com/healthNotes/Drug/Sulfasalazine.htm " >Sulfasalazi\

ne</A>

Was it ever definitavely ruled out that you dont have some form of reactive

arthritis? For most with PA the peak of joint problems will be pain and

stiffness first thing in the morning but your case sounds as if you condition

is aggravated by activity whereas most people with PA tend to feel better

after gentle exercize. One other thing that came to mind is; Can you point

out the major elements of your diet that were changed when you moved from

Scotland to Australia? Welcome to the group. I hope that we can find ways

to help you understand and improve and that you will bring the same to us in

turn. Orin

Note to Ed. Specificly Ron. I hate to disagree with you about your response

to Cheri's comment but this is one person who just might benefit from AP. I

wouldnt be so quick to rule that out as an option.

[Ed. Note: That's Ok Orin - it's perfectly alright to disagree even if you *are*

wrong - Ha, ha. Just joking. Yes, I understand that there is some evidence that

AP does seem to help people in the early stages of PA, but I wonder if any

common NSAID or mild DMARD wouldn't serve equally well. Ron]

[Guest guest]

Hi Allan

I am I remission and have been for the past five years. I had had PA for

about 10 years and it was that bad that I had difficulty turning a key

in a door. The steroids and anti inflammatory tablets worked for me. The

biggest change was when I got a water bed. I stopped all medication and

now have no pain. I still have the P, but it's not that bad. I can cover

most of it. I still worry each day though, when is it going to return? I

have just had an operation on my back for a slipped disc. I thought is

this the thing that will bring the PA back, but so far so good. I too am

interested if others have had a long spell of remission.

[Ed. Note: , was there any major lifestyle change, eating habits, or

anything else you can think of that might have had an effect on your remission?

Thanks, Ron]

[ ] Newcomer Story

Is there anyone out there who has PA in remission ?

Cheers, Allan

[Guest guest]

> [Ed. Note: Yes, antibiotic therapy usually works great for people

who have no symptoms of PA! ;-) Ron]

Ron,

Antibiotic therapy usually works great for people who HAVE symptoms

of PA! Me being one of them.

[Ed. Note: I have PA, and antibiotic therapy has done absolutely nothing to

improve it (and I am not alone). Ron]

I advise everyone to look at the following links and make their own

decisions:

rheumatic/ (go to Polls)

http://www.remedyfind.com/hc-Rheumatoid-Arthritis.asp (Look at the

side info, after going into antibiotics)

These next two discuss the antibiotic protocols:

http://www.roadback.org/lit/facts.php?file=facts/ (Ask them for list

of doctors in your area)

http://www.immed.org/reports/treatment_considerations/TreatConsid-

Report-1.html

Please click the link below to read a very good study on Mycoplasma

strands proven to be present in Rheumatic Arthritis (RA) patients.

http://www.hbot4u.com/lupus4.html

This is a huge directory of links with Mycoplasma and its role in

specific diseases includes: Chronic fatigue, Fibromyalgia, and more.

http://dir.allzone.com/Health/Conditions_and_Diseases/Infectious_Dise

ases/Mycoplasmal/

Very GOOD article by the Arthritis Trust about Minocin!

http://www.arthritistrust.org/downloads/newslets/1999winter.pdf

" Mycoplasma Infections cause many chronic illness's "

http://www.haciendapub.com/article24.html

" Mycoplasma infections in RA, Lupus, Fibro., and chronic fatigue "

EXCELLENT ARTICLE!

http://www.immed.org/publications/autoimmune_illness/pub1-3-13-

00.html

It has legitimacy:

American College of Rheumatology feels it is an effective treatment

option.

>From their site http://www.rheumatology.org

<http://www.rheumatology.org> I

have the following links and subsequent quotations:

http://www.rheumatology.org/patients/factsheet/ra.html

<http://www.rheumatology.org/patients/factsheet/ra.html>

" Successful management of RA requires early diagnosis and aggressive

treatment before functional impairment and irreversible joint damage

has

occurred. Nonsteroidal anti-inflammatory drugs such as ibuprofen may

be used

first, but all RA patients with persistent swelling in the joints are

candidates for treatment with disease-modifying drugs. These drugs

include

methotrexate, hydroxychloroquine, sulfasalzine, corticosteroids,

intramuscular and oral gold, d-penicillamine, minocycline,

azathioprine,

cyclosporine, leflunomide, and etanercept. "

http://www.rheumatology.org/ar/1997/may97.html

<http://www.rheumatology.org/ar/1997/may97.html>

" Because RA has been increasingly recognized as a disease with

significant

morbidity and mortality and one in which irreversible joint damage

occurs

early, there has been recent emphasis on early aggressive treatment,

despite

limited data. This double-blind, placebo-controlled study was

undertaken to

assess minocycline treatment in rheumatoid factor-positive RA

patients with

disease duration of [lt]1 year (average 5 months). The minocycline-

treated

group improved dramatically (65% with [lt]50% improvement) compared

with

placebo-treated patients (13% with [lt]50% improvement). If these

initial

results can be confirmed, it would have a dramatic impact on the way

early

RA is treated. "

http://www.rheumatology.org/ar/1999/aug99.html

<http://www.rheumatology.org/ar/1999/aug99.html>

" Clinical Science

" 1691 Treatment of Early Seropositive Rheumatoid Arthritis with

Minocycline: Four-Year Follow-up of a Double-Blind, Placebo-

Controlled Trial

" R. O'Dell, Gail sen, E. Haire, Kent Blakely,

Palmer, Wees, P. Eckhoff, Lynell W. Klassen, Melvin

Churchill,

Deborah Doud, Arthur Weaver, and Gerald F.

" This report describes long-term results (mean 4 years followup) in

RA

patients who were treated with minocycline during the early part of

their

disease. Compared with patients who had received placebo rather than

minocycline for 3 months during the early part of their disease, the

patients who had received minocycline had a significantly higher

frequency

of improvement or remission. These results indicate that

minocycline, given

early in the disease, is effective in the treatment of RA. "

[Guest guest]

> What are people's experiences of whether different climates

> affect things ?

Hi

I live in Scotland too and have noticed that since maybe

October/November time when the weather got colder my joints have been

more painful and it takes longer to get going in the morning. I have

PA in most joints and some bone damage in my toes and am taking

Celebrex & Co-proxamol painkillers. I was only diagnosed last year

at 33 although I've had it quite a bit longer.

Jakie

[Guest guest]

Allan, I live in Florida...we had an unusually cold winter and the pain and

fatigue were miserable. Its warmed up over the last few weeks and I seem to

be feeling better...also, my skin and arthritis do much better when I spend

time outside and in the saltwater. Hope that helps.

[Guest guest]

Cheryl,

First, I am so sorry for the loss of your father. My mother died 2 1/2 years

ago after a long and awful illness, and while on some levels it has gotten

easier, there are days when her absence overwhelms me. I would sell my soul to

have one more cup of tea with her. Your father was important to you and I am

not sure you will ever get over his loss, but in general, it will get easier.

In any case, my father also died of pancreatic cancer when he was just 33 years

old.

Kathy

<<I know I've noticed that someone else in this

group had a father who died of pancreatic cancer. Is it just the two of us,

or are there others?

Cheryl>>

[Guest guest]

Hi Kathy,

Wow, when you think you're having it bad you can always find someone who has

it worse! My heart goes out to you. Thanks for the response.

Cheryl

Re: [ ] Newcomer Story

> Cheryl,

> First, I am so sorry for the loss of your father. My mother died 2 1/2

years ago after a long and awful illness, and while on some levels it has

gotten easier, there are days when her absence overwhelms me. I would sell

my soul to have one more cup of tea with her. Your father was important to

you and I am not sure you will ever get over his loss, but in general, it

will get easier. In any case, my father also died of pancreatic cancer when

he was just 33 years old.

> Kathy

>

> <<I know I've noticed that someone else in this

> group had a father who died of pancreatic cancer. Is it just the two of

us,

> or are there others?

> Cheryl>>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>