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Old 01-31-2003, 02:21 PM   #1
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Join Date: Jan 2003
Location: kansas
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mwatson2001 HB User
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My nine year old daughter was diagnosed with polyarticular JRA in September of 2001. Her rheumy is considering changing her dx to mixed connective tissue disease because her anti-RNP came back very high. Her ANA is also very high and she is rheumatoid factor positive. The rheumy told me he has never seen anyone with arthritis as severe as hers progress to mctd, but there is a first time for everything. She has Raynaud's, facial rash, erythema nodosum occasionally, and quite severe arthritis. He is also beginning to see some skin changes on her hands possibly related to scleroderma. She used to get high fevers for a few days every month or so, until she went on Remicade. We recently switched to Enbrel and they have not returned. Her crp was finally normal last month, her sed rate is still high, and her wbc is right around 4. They think her wbc is due to the methotrexate. I believe it was higher than that before starting the med. We have had her heart, lungs and brain tested and they are all fine. They have ruled out lupus through bloodwork, although she does have some symptoms. Has anyone ever had symptoms like this?

Michelle

 
Old 01-31-2003, 07:48 PM   #2
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Join Date: Oct 2002
Location: va,usa
Posts: 57
shasha HB User
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hi michelle and welcome,

first i want to say how sorry i am to here about your daughter's condition. i cant imagine one of my children going through something like this. you both must be very strong. i was just diagnosed with lupus sle and discord lupus. i also have raynauds along with some other fun stuff. you asked if anyone has any of those symptoms. a while ago i was running a low grade fever for a couple of months, i have arthritis, but not severe.
so many symptoms of autoimmune disease overlap each other so it would be hard to just go by symptoms. oh i also have a malar rash and hand rash, my malar rash started out for the first few months as just redness on my checks, nose, forehead, and chin. its taken me a yr. and half for my diagnoses, sometimes it takes a while for everything to show in the blood. there is not one test that confirms lupus, but with history and meeting 4 of the 11 criteria which are :
malar rash
discord rash
photosensitivity
oral ulcers
arthritis
serositis
renal disorder
neurologic disorder-seizures
hematologic disorder
antinuclear antibody-positive test for anti. antibodies
immunologic disorder-pos.anti-double stran.dna test,pos
itive anti-sm test, pos. antiphosholipid antibody such as anticardiolipin, or false pos. syphilis test
this info. is from the lupus fondation of america pamphlet.
i am just learning all this as it is pretty new to me.
good luck i will keep her in my prayers.
sha,

 
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Old 02-01-2003, 12:25 PM   #3
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Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User
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So sorry about your daughter it must be tough. Yes,
those symptoms are familiar to most of us with Lupus.
But, as the letter before stated autoimmune symptoms
often overlap. Lupus is also considered a connective
tissue disease. My only advice to you is to read every
thing you can get your hands on on the net, library
and book stores. Often, alternative health treatments
can be done along with what the Dr.'s are doing that
can help your daughter's progress. You don't need to
try anything too far out but there are some things
that will help build up your daughters overall health. Good luck to you and don't be afraid to get second
opinions when you get into these more serious problems
you learn just how in-exact a science medicine really
is and how important an experienced Dr. is.

------------------

 
Old 02-01-2003, 08:34 PM   #4
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Join Date: Dec 2002
Location: CALIFORNIA
Posts: 42
MAN WITH LUPUS HB User
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Hi you should have the Dr. double check the skin change on her hands & nails and check her toe nails and skin. This sounds like the Reynod flaring up I would check this can be treated if cougt right away if you wait to long it could cause serious skin and nal damage.

hope you can use this.

Take care and good luck

Sal
Quote:
Originally posted by mwatson2001:
My nine year old daughter was diagnosed with polyarticular JRA in September of 2001. Her rheumy is considering changing her dx to mixed connective tissue disease because her anti-RNP came back very high. Her ANA is also very high and she is rheumatoid factor positive. The rheumy told me he has never seen anyone with arthritis as severe as hers progress to mctd, but there is a first time for everything. She has Raynaud's, facial rash, erythema nodosum occasionally, and quite severe arthritis. He is also beginning to see some skin changes on her hands possibly related to scleroderma. She used to get high fevers for a few days every month or so, until she went on Remicade. We recently switched to Enbrel and they have not returned. Her crp was finally normal last month, her sed rate is still high, and her wbc is right around 4. They think her wbc is due to the methotrexate. I believe it was higher than that before starting the med. We have had her heart, lungs and brain tested and they are all fine. They have ruled out lupus through bloodwork, although she does have some symptoms. Has anyone ever had symptoms like this?

Michelle
__________________
PEREZ

 
Old 02-03-2003, 08:35 PM   #5
Junior Member
 
Join Date: Dec 2002
Location: CALIFORNIA
Posts: 42
MAN WITH LUPUS HB User
Post

Hi Michell

Remember these Faqs about Lupus and all the symptoms of Lupus first there are accouple different typs of Lupus and Various symptoms for Lupus. not every one is the same from small child too teen to adult the diff typs of Lupus have diff affects diff symptoms. just because some one has Lupus does not mean they have had all the symptoms or mean they will ever get them some cses state people getting very few symptoms some get them all I was one of those people that got them all except being bothered by the sun that does not effect me at all.

Good luck tell your doughter to be strong and you be strong for her. We are all here to talk and help this Lupus is a tricky thing.

This is a poem my sister wrote for me while I was in the hospitol this last September I thought it was moving.

God didnít promise dayís with out pain,
laughter without sorrow or sun without rain.
But God did promise strength for the day
& comfort for the tears and a light for the way.

Teresa M. Perez
09/12/02
May your path be clear for you and your dughter.

Sal
Quote:
Originally posted by mwatson2001:
My nine year old daughter was diagnosed with polyarticular JRA in September of 2001. Her rheumy is considering changing her dx to mixed connective tissue disease because her anti-RNP came back very high. Her ANA is also very high and she is rheumatoid factor positive. The rheumy told me he has never seen anyone with arthritis as severe as hers progress to mctd, but there is a first time for everything. She has Raynaud's, facial rash, erythema nodosum occasionally, and quite severe arthritis. He is also beginning to see some skin changes on her hands possibly related to scleroderma. She used to get high fevers for a few days every month or so, until she went on Remicade. We recently switched to Enbrel and they have not returned. Her crp was finally normal last month, her sed rate is still high, and her wbc is right around 4. They think her wbc is due to the methotrexate. I believe it was higher than that before starting the med. We have had her heart, lungs and brain tested and they are all fine. They have ruled out lupus through bloodwork, although she does have some symptoms. Has anyone ever had symptoms like this?

Michelle
__________________
PEREZ

 
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