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Hi im new here...Justbeen diagnosed with Lupus and are very scared and confused...My doctor sent 2 skin samples away for testing as I had a rash on my chest only and the test results came back with a possitve reading of Lupus. Now he has ordered blood tests to be done to see if it is in the blood stream....what's does this mean for me and my family if they are positive?
I am 39 years old with a 3 year old son...I need some comforting advice please help....:worried:
 

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hi and a warm welcome..despite what you read...we have all been there and done that !!...Lupus can be controlled.

Some people have it and it hardly affects them...other people yes it does bother them.

The best thing is support and you have come to the right place for that...
I was dx in 1978....you learn to live with it...
x
 

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Hello kirschie

Lupus does seem firghtening and confusing to begin with, but you can start to feel a little less out of control by quietly learning a little more in your own time as and when it suits you. The site is useful for this and there are recommended books - perhaps for later.

You are being monitored already, so that is good - the most important thing.

One of the good things about lupus is that although it is not as uncommon as people generally think, it does not have to be severe, and whilst there is evidence it runs in families, many families have only 1 sufferer. What I mean is - your child is by NO MEANS bound to have it too.

I have lupus in a very mild form, so when I think of my symptoms, now my pain is controlled, and I am taking medication, my only problem is bouts of tiredness/forgetfulness, which I am learning to deal with. I have never had a thrombosis of any type and I have never been hospitalised.

Diagnosis has meant medication to reduce the potential risks if my condition becomes more severe. So I think I am very fortunate.

I used to get frustrated by the tiredness, but now I have some sort of a reason I find it a lot easier to accept. It is taking a little time, but I am getting there and can see marked improvments from only 12 months ago. I've learned to pace myself without guilt.

Coming to terms with the diagnosis takes different lengths of time for individuals. Sometimes you hit a low and take a few steps backwards again, but if you try to mentally relax a little, and not be too hard on yourself and not focus too much on the negative, you can feel a lot better just by getting your 'head straight'. Like I say - it can take time.

Christine is right. You really do learn to live with it. And the good thing is that with all the regular checks, any other things that come along with age will be spotted quicker than somebody not being monitored.

Stay in touch with the site and try chat too. People here are very kind.

Take good care.

:love:
 

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elisabethm
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elisabethm

welcom to the site you will get a lot of support was diagnosed last year but my own doctor thinks i have had it all my life when i think back he is probabily right as i have loads of other problems apart from the lupus but you will find loads of news on the site :)
 

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Do you have any evidence of systemic disease such as fatigue, joint pain? If not, then you have a good chance that your lupus is limited to your skin at this point. Furthermore, there is a good chance it would remain limited to just your skin (90% or more!). It's very good the doctors are checking you out very thoroughly for signs of any systemic involvement, and this testing should be repeated periodically too. Especially true if you develop additional symptoms beyond skin rashes.

There are very good medications to treat lupus of any kind these days, so there is a lot of hope that your skin will clear up. Welcome to the site!
 

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Hello,
Firstly most Lupus medication is very good, although it can take a bit of time to get the dose right.
Please do not read all sorts of old info. on Lupus some websites etc. are very old fashioned and gloomy and fail to take account of progress in treatment.

If it makes you feel any better I have had Lupus for over 25 years and I am still here. We cope somehow although it is hard for those with young children.
Is there anything in particular you need to know?
x Lola
 

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Discussion Starter #7
Hello and Thankyou

Hello,
I have been reading alot of disturbing stuff on other web sites and thats why I am so freaked out.
I am waiting on more test results to come back to find out which catergory of lupus I am in if you could call it a catergory.
My main question I suppose is how quickly does it progress and how quickly does medication actually take to start bringing things under control to be able to live normally.
 

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Kirschie,

I wish there was a simple answer to your questions. Lupus is known as the disease of 1000 faces so it affects everyone differently. You are very fortunate to have it diagnosed so quickly so that is in your favor. The best thing is to have a doctor on top of things. If you are not under the care of a Rheumatologist I suggest you find one after the blood work comes back. Not all Rheumatologists specialize in Lupus. I drive 1.5 -2 hours to see my rheumy versus 5 minutes to the local guy.

Plaquenil is the main treatment and it usually takes 3-6 months to kick in with skin issues having improvement even sooner. I suggest you read the list of Lupus "criteria" and symptoms that we have posted at the top of the Not Yet Diagnosed forum. See if anything else there rings a bell.

Most Lupus patients live a normal life span and after treatment kicks in are able to return to most of their previous activities. The hardest change is staying out of the sun. So if you spend your summer at the beach it will be more difficult.

Remember that most of us that post on health related websites generally fall into 3 categories.
1. Not diagnosed but possible Lupus.
2. Newly diagnosed like you are.
3. The very ill end of the spectrum like I am.

The other Lupus patients are busy leading their lives and don't have time to hang around websites. We do have a handfull of active members who do not fall into one of the 3 categories above and some that are fairly ill but still able to be somewhat active.

If you "only" have discoid (skin) lupus then the major treatment is Plaquenil and rarely a need for any other medications. When do you see the doctor again to get your lab test results?

Hang in there,
Karen
 

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Discussion Starter #9
HI Karen,
Just got blood test results back..blood tests clear of lupus but he said waiting on another blood test to come back in regards to the lupus rash on my chest what does this mean...
very confused now
kirschie
 
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