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Discussion Starter · #1 ·
Hello Again,
Just another question, of course not my last....I was wondering do most people with Lupus have organ involvment?

This site has been a life saver, thanks to everyone here....
 

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Hello Connie Mitten,

Goods question, I've been wondering that too! I have only recently been diagnosed with SLE (no organ probs at present).

I also have been wondering what the percentage is of SLE sufferers with no organ development then developing some!

I prefer to know facts they help me deal with how I then need to adapt my life in ways that could make me keep healthy for longer!

Love Lesley
 

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Hi,

How many people get "organ involvement" depends a bit on how it is defined. For example many SLE patients will show a degree of kidney damage on biopsy at autopsy, but most of these will not have had clinically significant problems. So technically they had organ involvement, but the certainly didn't have organ threatening disease.

My rheumatologist says that about 50% of SLE patients will have some degree of organ involvement, whilst only about 10% will have organ threatening involvement (ie so bad that there is a real chance the orgen will fail or the person will die without treatment).

If you want to get really picky about definitions, then the skin is also an organ. Also the name "systemic lupus" means that there are multiple organ systems involved, so some people would argue that in order to get a diagnosis of SLE there has to be organ involvement in more than one organ. Although by this definition the skin and blood system are considered "organs".

Still, I think what you are asking is how big the chance is that you will get really sick - life threateningly sick? That chance is pretty low. Now a days more than 95% of people can expect to have a relatively normal life span. Also for most people, they way they start out with SLE tends to indicate the long term prognosis. If someone has not had organ involvement in the first 5 years after diagnosis, the chances are good it wont happen later either.

Most importantly remember that worrying about what might happen is bad for your quality of life and for your stress levels and doesn't change anything. Your best option is to be well informed and communicate well with your doctors and comply with treatment reccomendations. Look after yourself both physically and psychologically, and whatever happens you can make the most of your life.

X C X
 

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Hi again Connie,

I think - but don't quote me on this :hehe: - that there are an awful lot of people who DON'T have organ involvement with lupus. However, I suppose that depends on how you look at "organ". After all the skin is an organ too and it is very frequently affected in lupus. I suppose what we usually mean by organs are the internal ones.

They do say that if you don't have organ involvement in the first five years of lupus you are unlikely to develop it later, though it CAN happen.

Don't worry about the questions, that's what we're here for and I'm really glad to see that you seem to be feeling a little brighter and you're answering questions yourself too :wink2:

hugs to you,
Katharine
 

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Haha, Cath wrote at the same time as me, but she's much better on the "techy" explanations!!!
 

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well explained Cath.

I dont care if all my joints pack up eventually...not that i want them to of course,but i would much rather suffer with them than have any organ involvement.

I think its one of the things many of us worry about.
 

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Discussion Starter · #7 ·
Organ Involvment...

Thanks again for all your replies, all of you are life savers, I really don't know at this point what I would do without this site. I am still in bed sick, and very worried, and very scared, it is actually to the point where I got my period 2 days ago, I am regular normally, I got it 2 weeks early, the only time in my life this has ever happened is when I have been really stressed, and this is the most stressed I have ever felt. Sorry for rambling, I guess it is because I have not seen the reumaltologist yet, and I think I am dying at this point. So thanks again for the good unput. I am going to get off of here, and call the gp to see if my urine work up is back yet, the gp redid the test 2 days ago, for me to take too the reumaltologist the end of the month. As far as my organs, I will try not to worry yet, unless something happens, it just seems like I am getting more symptoms everyday.
Thanks again,
Connie
 

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Connie:

First welcome, second sorry you had to join us! This site truly is a life saver!

Having a good Rhumy can be the most importants thing for us Lupies!

Good to have a GP ontop of things as its better to have one Dr to coodinate and explain all of the results from the different drs we see.

Hope all is OK.

Stephanie
 
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