New Member

Report post · January 18, 2001

hi tony

my name is rosemary i'm 39 with mild to moderate psoriasis for the past 15 years

and now for a little under a year 'pa' (moderate to severe) and it seemed to hit

really hard out of no where. i'm sorry to hear all the stuff your going through.

you seem to have a good attitude about it all.

since i'm at work i'd better go. but i'd like to hear from you again.

ro

Report post · January 18, 2001

Hi Tony. Welcome to the group.

You asked: " Could this have happened over night with no warning? "

I say, yes. The first sign of PA that I had was in one of the

knuckles on my left hand. I distinctly remember driving to work

when I first noticed the pain. When I got to work I noticed that

the area was swollen and the skin that covered the knuckle was

reddish.

I was convinced that I must have banged my hand at some point even

though I couldn't remember doing so. I also remember continually

feeling the urge to crack the knuckle to relieve the pressure but

it didn't always crack. It was a long time before I finally saw a

doctor and by then the swelling and discoloration was much worse. I

was immediately referred to a reumatologist. That was about six or

seven years ago.

Best of luck Tony. I admire your attitude.

Gayle

" Everything works out in the end. If it hasn't worked out, it isn't

the end! "

Report post · January 18, 2001

Tony,

Just to let you know, my arthritis happened virtually overnight too. I woke

up with a huge swollen knee and that was it. Also, when my psoriasis is bad

my arthritis is almost always terrible. They definitely go together for me.

Gold injections seem really old fashioned to me. Have you talked to your

doctor about some of the new biologic drugs like Enbrel? Maybe that is

something you would able to take.

Keep fighting -

Sara in L.A.

[ ] New Member

Hi,

I am a 31 year old male just dx with PA.

I have had psorasis since the age of 15. It started getting really

bad about 3 years ago. At that time my Dematologist @ Yale New Haven

Hospital put me on Methotrexate and I started PUVA treatments 2x a

week. It cleared about 80% doing both treatments concurrently.

Last February I found out that I had Leukemia (AML) and I had to stop

both treatments since my cancer was the " pressing issue. " The Chemo

I was on did wonders for my skin, not one single sign of psoriasis.

After 10 months of fighting I am now in remission. I can no longer

take Methotrexate or PUVA because of all the damage Cancer & Chemo

did to my liver, heart & kidneys.

Now I have just been told that the pain I have had for the past month

in my left hand, right wrist, both knees and feet are from having

PA. Could this have happened over night with no warning? Could it

be causing this much pain? I have never had any problems with

arthritis before! I had a bone scan that showed arthritis in the

places that I mentioned and showed no signs of the Leukemia turning

into bone cancer. I have been tested for gout and that is negative.

I take the following on a daily basis: Prednisone (30mgs), Vioxx

(25mgs), Azulfidine (2Grams), Dilaudid (12mgs) & Neurontin (900mgs).

The last two are for pain.

My Dr said that the next step might be to start gold injections.

Does this work for any of you? I am unable to do more traditional

treatments because of the other complications. Also, does the PA get

worse when there is a flair up of psoriasis? Right now my psoriasis

is the worst it has ever been. It came back QUICKLY as soon as I

finished my rounds of Chemo.

Don't misunderstand me, as I am not complaining since I am most happy

to be alive and kicking.

Can any of you steer me in the right direction with my DR since this

is all so new to me?

Thank you,

Tony

Report post · January 19, 2001

In a message dated 01/17/01 8:30:49 PM Eastern Standard Time, gtwgn@...

writes:

<< After 10 months of fighting I am now in remission. I can no longer

take Methotrexate or PUVA because of all the damage Cancer & Chemo

did to my liver, heart & kidneys. >>

Hi Tony - Glad to hear you are having success with the battle against the

cancer. As far as the PA, what I've found to be my idea drug " cocktail " is

prednisone, vioxx, and MTX. As you can't take the MTX, maybe you could try

to go on Enbrel or Remicade - I'm not sure how they effect the liver and

kidneys, but they may be easier on them than the MTX - check with you doctor.

Other than that, give yourself a lot of TLC and try to avoid stress - I think

that's good for all of us to try to do no matter what meds we use.

Your story touched me as I tend to focus on the PA too much sometimes and

forget that others out there have far worse diseases they battle.

Hang in there - I know I speak for the whole group when I say our thoughts

and prayers are with you.

Take care,

Report post · January 24, 2001

Hi

I too am rather young (20) and have had PA for about 18 months. I am also

from the UK (originally Kent but now studying in Cardiff).

I take Salazopyrin which is the brand name for Sulfasalazine. I only started

this 2 weeks ago and I'm finding it tough. I keeping getting headaches and

have thrown-up a couple of times this week as well. But I remain optimistic

that this will settle down as my Dr has assured me. Make sure take you are

getting blood tests regularly. Yesterday my Dr told me I should have them

every three weeks for three months.

I also take 25mg of Vioxx a day to keeps the aches and pains at bay.

I also take Cod Liver oil, Vitamins and Ginger. Ginger is not only supposed

to help joint mobility but it also helps to relieve the sick feling in my

stomache.

It is nice to hear from someone else of the same age group and from the UK,

I was begining to feel a bit isolated.

I hope that you find this group helpful. I have found it to be a great

resource for information and much needed support.

Lot of Luck!

SARAH

>From: " Uthmann " <susanu@...>

>Reply- egroups

>< egroups>

>Subject: [ ] New Member

>Date: Tue, 23 Jan 2001 20:57:54 -0000

>

>Hi, I've just joined this group and so I thought I better introduce myself.

>My name's , I'm 21 and live in Edinburgh.

....

>Is this a mainly American group? I only ask because I know drugs and

>treatments can be drastically different! My husband Mike is from Seattle,

>so I know both systems quite well.

Report post · January 24, 2001

Hi ,

Welcome to the group!!

> I was wondering if anyone can give me any advice on the

>sulphasalazine, and how to manage the pain (I'm affected in every

>joint but some are worse than others).

I've been taking sulphasalazine for about 6 months, along with an

anti-inflammatory (Indocin or Volteran) (for the PA), a muscle

relaxer (for fibromyalgia), Evista (hormone to replace estrogen and

aid in stopping my bone softening (osteopenia), a multi-vitamin and

calcium, Celexa (anti-depressant), saline nasal spray and Refresh P.M.

for dry nose and mouth and the occasional Xanax for anxiety.

The sulphasalazine (a DMARD - disease modifying arthritic drug), in

combination with the anti-inflammatory, have stopped the progression,

relieved the swelling and much of the joint pain for me. But be

patient; it took several weeks for the anti-inflammatory to reduce

the swelling and pain and several months for the DMARD to take effect.

Take your time to adjust and assimilate the info and be patient

with yourself and your body.

Patty B in the Pineywoods of East Texas

Report post · January 27, 2001

Dear ,

Welcome to the List. I'm sorry that you have to be among Lyme sufferers,

but this is a wonderful resource. I've rec'd much support and good info.

here.

Do you have an LLMD? That is what we call a " Lyme Literate Doctor. " It's

very important to see someone who is familiar with Lyme Disease, and

experienced in treating it, even at the diagnosis stage. As you probably

know from reading on the internet, late stage and chronic Lyme are

controversial, in that many " good " doctors still use outdated information

and diagnostic criteria.

For example, many people with late stage and chronic Lyme test negative on

Lyme blood tests. It needs to be a clinical diagnosis as well, and to get

that done accurately, you need to see an LLMD. He or she will also know

of more sophisticated tests to conduct.

I tested negative for over 5 years; when my blood test got sent to a more

sophisticated lab, it came back indicative of Lyme. You must see a doc

who knows how to read the tests properly. Others can tell you more about

the " bands " on the Western Blot; the CDC requires 5 to be reactive to

diagnose Lyme, but you might have fewer than that and have Lyme!!

When I got started on antibiotic treatment, I improved. I started getting

my life back, passing my Ph.D Orals after 6 years of struggling with

fatigue, fever, rib pain, brain fog and other symptoms. This evening I

finished the last revision on my Dissertation proposal! (That's why I can

hang out on the email for a bit ).

Anyway, it's very important to see a Lyme Literate doc. This site and

others can help you find one in your area. Let us know if we can help.

Welcome -

Marie

ill since 1994

dx'd CFIDS

dx'd Lyme Dec. 1999

Report post · January 28, 2001

> Hi, my name is ; I am a resident of North Carolina. My story

is

> probably similar to many on this list. I had been struggling with

> various seemingly unrelated physical problems for many months, but

> kept rationalizing each symptom away as best I could. When I could

no

> longer ignore the situation I took a laundry list of complaints to

my

> family doctor, who suspected thyroid or liver problems, or perhaps

> diabetes. My blood work came back normal, leaving me feeling

> mystified and a bit foolish. My doctor commented that, at 41, I

might

> be just experiencing some of the frustrations of middle age!

>

> Chagrined, I tried to go on with my normal routine, but found many

of

> my previous symptoms considerably worsening and new symptoms

> presenting themselves. Eventually a friend mentioned Lymes disease

> and recommended I check into information on it. I was doubtful, but

> did use the internet to research the malady. You can imagine both

my

> shock and my relief to stumble upon a list of symptoms that exactly

> mirrored mine! I also felt a great deal of concern because all the

> information I gathered seemed to indicate that I was in a later

stage

> of the disease. Gathering my data and my lyme symptom list, I went

> back to my doctor.

>

> Now I await the results of another blood test. After all my

research

> I have my doubts as to its accuracy, but I must start somewhere. I

am

> so grateful to find a group like this!

>

Welcome !

This list, and the people here, are a great resource to have when

confronting something like Lyme. It has been a tremendous help to

me, I usually just read, and only sometimes post. It is a great

place. You can ask anything you want here,without fear of reprisal,

in fact it has probably been asked before, by many of us at many

times. Welcome, and good luck!

Jim

Report post · January 28, 2001

On Sun, 28 Jan 2001 jschm47974@... wrote:

>

> > Hi, my name is ; I am a resident of North Carolina. My story

> is

>

> Welcome !

>

> This list, and the people here, are a great resource to have when

> confronting something like Lyme. It has been a tremendous help to

Hi !!

I just want to add my welcome to the list along

with the others. I begn as you did with symptoms which my regular Dr.

diagnosed as general " stress " and gave me some friendly advice along with

a suggestion I add my 1 to 1+1/2 glasses of WINE each day!! (I didn't

mind at the time!) . . . but it is interesting that when I went to my

Pharmacist for a product I was complaining to him about how I felt and he

said: " Wow Glen, you know your symptoms are almost exactly what I was

experiencing when I had Lyme Disease. He immediately pointed me to a LLMD

in PA. (I am in New Jersey) and told me to bring the appropriate amount ot

$$$$ with me. My urine (LUAT) test was non-conclusive but the BLOOD TEST

showed Lyme, Erlicheosis and Babiosis!! I was SO HAPPY to be diagnosed

and begin my anti-biotic treatments. It seems I had Lyme for 5 or 6

months during summer of 1998, and I began oral antibiotics in Nov., 1998

and continue at present. I just in the last couple on months begin to

experience improvement and for the last 2 months began a walking routine

with which my LLMD is thrilled. (He can't get his patients to walk - and

I never felt like doing it myself!!)

Let us know what you learn and try to find a LLMD as this is MOST

====

important!! This is a wonderful list and we are all glad you are a part

of it.

Blessings:

-GLEN from NJ.

_________________________________________________________________

/ | GLENROY WOLFSEN wolfsen@... | \

( - - - " The final, ultimate freedom, the daring of / \ \

\ | freedom and the burden of freedom, is the virtue of( - ) /

\ religious maturity. (react as rarely as possible..)Nietzsche/

\_____Berdyaev__________________________________________________/

<http://www.eclipse.net/~wolfsen>

Report post · January 28, 2001