Question what to expect with lupus diagnosis?

April 21, 2004

Hi everyone! I want to tell you all thank you so much for all the

support and answers you give to all of us. I can't believe what a

great group of people this support group is. I love checking in

each day just to learn something new about the disease or laugh

because someone left something funny to help cheer everyone up!

Now to get to my question. I told a little about myself when I

first joined the group. I was diagnosed with lupus mainly by

coincidence. I hadn't even been in to a doctor for 2 years and was

simply getting a physical after having some problems with headaches.

My doctor apparently found I had an inflamed liver when she did

blood tests and decided to do more checking and tests. She did what

she called a lupus Panel and it came back postive for Lupus.

I don't understand all the technicalities of the tests however I do

have a copy of all the test results that she did and wish I knew

someone who could read them. Anyway, getting on with the question I

find by reading the posts on here that a lot of you sound really

sick and have a lot of complications due to the lupus. So far I

mainly have had some pain in my feet and some minor itching and

swelling on my hands that comes and goes. I mainly just feel tired

and fatigued if I do too much. What I am dealing with right now

seems totally tolerable and I could live with it if it stays this

way. Were any of you like this where it was just minor at first and

then continued to get worse? How long did it take if it did get

worse. Also on the tests I noticed it said something about lupoid

hepatitis. Is this something that could get worse or do I need to

worry about it? Right now I take a small dose of Plaquenil and

Trilisate an anti-inflammatory. Part of the time I don't feel like

I really even need to take the meds although I do take them.

I almost feel guilty for being a part of this group without having

near as many trials to deal with. I just want to understand what I

am dealing with.

Thank you for accepting me and if you have any answers I would love

to hear from you! Carol

April 21, 2004

>What I am dealing with right now

> seems totally tolerable and I could live with it if it stays this

> way. Were any of you like this where it was just minor at first and

> then continued to get worse?

Carol -

There seems to be no telling what course this illness takes...

I'm about where you are at this point in time. For several years my

(former!) PCP insisted there was nothing wrong with me - it was a persistent

rash that sent me to a dermatologist who was very on the ball and shipped me

off to a rheumatologist two years ago this month - and at their combined

advice I changed PCPs to one they both knew. I was so tired initially it

was all I could do to get out of bed with 12+ hours of sleep... After

several months on Plaquenil I was back to being " stiff " in the morning or

when stormy weather was/is about to come through and functioning decently on

my old 7.5 to 8 hours of sleep. Due to other reasons - which I won't get in

to - I haven't worked in 3 years and have been able to eliminate a lot of

stress in my life. Just got word today that I got a part-time job - 1 full

day and 2 half days a week. Hopefully I'll be able to handle it - I have to

as I have gone through all my savings and am not obviously ill enough to

qualify for disability (and besides that will qualify for reduced regular

social security in a couple of more years - the length of time it would

likely take for disability to kick in if I could persuade the investigators

I was sicker than I look - it's hard to prove you can't work when you

haven't been working!).

Sue

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April 22, 2004

Carol, I think each one of us may give you a different story on that.

Lupus is so unpredictable it's really hard to say what will happen and you

shouldn't assume anything. Here's my story. I'll try to make it as short as

possible, but that's quite impossible with me.

I was diagnosed 17 years ago. It started with my knee hurting, but that

was a knee I had surgery on three years earlier, I thought it was just

bothering me. I also started developing a rash on my face I thought to be

allergy to some face cream I was using. This was all January of 1987. The

only symptoms I developed before then was swelling of my legs the previous

summer, but I also had an explanation for that. I was getting married, it

was very hot and we had a lot of running around to do. There was also some

problems with kidney colics due to kidney sand that wouldn't developed into

stones (or so the doctors said). By April of 1987 I was unable to get up

from bed. Everything hurt. I was 22, just married, and my hubby had to sleep

in another bed because he was afraid to touch me. When I finally couldn't

dress myself or do my long hair, I went to a physician. He didn't know what

it was, he said the rash looked like scarlet fever, but he couldn't explain

the swelling mostly on one side of my body. He thought it might have been

rheumatoid arthritis, but again the swelling should be consistent on both

sides. A week later I was seen at the Rheumatology Clinic in Warsaw, Poland.

The doctor took one look at me and started asking me about the rash on my

face. I was hospitalized that same day. Stayed in the hospital for 2 months

and was told right at the beginning I had lupus with kidney involvement.

I was very sick for the first three years. In and out of the hospitals,

always in pain and always on high steroid therapy. I was also on imuran.

After the first 3 years things finally started slowing down and I went into

a long remission. I was symptom free. I was treated for kidney problems

throughout the remission, but I wasn't experiencing any active symptoms. In

fact, I was able to consider pregnancy, not once, not twice, but three

times. It wasn't until the summer of 2002 (my baby was 2.5 by then) when

things started going downhill for me again. My kidneys went into major

flare, my pancreas was also affected, I started hurting and my hands and

legs started cramping. I'm much better now after a year and a half of

chemotherapy, but there now is permanent damage to my kidneys. I can do a

lot of things, but everything has to be slow as I get tired very quickly. My

hands get spasticity a lot when I do a lot of things, mornings are best

after I have a chance to rest. I try to post in the morning, because later

on it gets a bit difficult to type too much.

So, I started off really bad, then I was in a nice long remission for so

many years. Now, I'm not so good but I'm thankful it's not that bad and I am

working on getting better yet again. That is my story.

Mojo

Question what to expect with lupus diagnosis?

> Hi everyone! I want to tell you all thank you so much for all the

> support and answers you give to all of us. I can't believe what a

> great group of people this support group is. I love checking in

> each day just to learn something new about the disease or laugh

> because someone left something funny to help cheer everyone up!

>

> Now to get to my question. I told a little about myself when I

> first joined the group. I was diagnosed with lupus mainly by

> coincidence. I hadn't even been in to a doctor for 2 years and was

> simply getting a physical after having some problems with headaches.

> My doctor apparently found I had an inflamed liver when she did

> blood tests and decided to do more checking and tests. She did what

> she called a lupus Panel and it came back postive for Lupus.

>

> I don't understand all the technicalities of the tests however I do

> have a copy of all the test results that she did and wish I knew

> someone who could read them. Anyway, getting on with the question I

> find by reading the posts on here that a lot of you sound really

> sick and have a lot of complications due to the lupus. So far I

> mainly have had some pain in my feet and some minor itching and

> swelling on my hands that comes and goes. I mainly just feel tired

> and fatigued if I do too much. What I am dealing with right now

> seems totally tolerable and I could live with it if it stays this

> way. Were any of you like this where it was just minor at first and

> then continued to get worse? How long did it take if it did get

> worse. Also on the tests I noticed it said something about lupoid

> hepatitis. Is this something that could get worse or do I need to

> worry about it? Right now I take a small dose of Plaquenil and

> Trilisate an anti-inflammatory. Part of the time I don't feel like

> I really even need to take the meds although I do take them.

> I almost feel guilty for being a part of this group without having

> near as many trials to deal with. I just want to understand what I

> am dealing with.

> Thank you for accepting me and if you have any answers I would love

> to hear from you! Carol

>

> " The LUPIES Store " Come check out our store...

> http://www.cafepress.com/thelupies

>

> " The LUPIES Web Page "

> http://www.itzarion.com/lupusgroup.html

>

> " The LUPIES online photo albums! "

> Check out what your fellow Lupies look like...

> http://www.picturetrail.com/gallery/view?username=lupies

>

April 22, 2004

MOJO, Thanks for sharing your story with me. It is so interesting

how different each person can be. I guess it's just a matter

of " time will tell " on what to expect. I'm glad you are doing

better and hopefully things will continue that way for you. I

appreciate everyone being so willing to help here and hope maybe I

can be of help to someone sometime. Thanks again! Carol

-- In LUPIES , " Mojo (Joanna) " wrote:

> Carol, I think each one of us may give you a different story on

that.

> Lupus is so unpredictable it's really hard to say what will happen

and you

> shouldn't assume anything. Here's my story. I'll try to make it as

short as

> possible, but that's quite impossible with me.

>

> I was diagnosed 17 years ago. It started with my knee hurting,

but that

> was a knee I had surgery on three years earlier, I thought it was

just

> bothering me.

> >

April 22, 2004

Hi Sue,

Thanks for the response. I sure hope things work out for you with

the job. I have been lucky enough to not have to work for the last

15 years. Although I have taken part time jobs just to have some

extra money or help out a little at times. Right now I work 2 part

time jobs that are very low stress and take about 13 hours a week or

so. I take care of my neighbor across the street who is 84 and I

spend 3 hours a day 3 days a week with her. The department of aging

pays me. It is so nice because she is really sweet and works with

me if I have to change times etc. The other job is I do mystery

shopping for stores once a week and I get paid for drive time shope

time etc and I do all the paperwork on my computer at home. I'm not

sure if I could work a full time job at this point or not. I know I

get tired more often now than I used too. Goodluck with things and

let us know how the job works out. Maybe someone has some ideas to

help you. Carol

initially it

> was all I could do to get out of bed with 12+ hours of sleep...

After

> several months on Plaquenil I was back to being " stiff " in the

morning or

> when stormy weather was/is about to come through and functioning

decently on

>

April 22, 2004