Lupus?

[AllieBaba]

Does anyone here live with or know of someone who lives with Lupus? I was tested last week and it looks like I'm positive. I'm not too concerned about it because my symptoms aren't any of the bad ones...I don't have kidney/liver/heart issues, no dementia (so far! Knock on wood!)...I don't suffer from fatigue to amount to anything (except when anyone else would be tired too....) My primary issues are sore recurring sore throat & skin issues (which have been attributed to psoriasis, which I also have) and some joing inflammation.

So I'm not too concerned about the diagnosis as a life changing event, if I have it I've had it for a long time...but it has never really crossed my radar before, and I don't know much about it.

I've been researching it online and like most autoimmune disorders, the symptoms are all over the board.

 

[Kooshdakhaa]

I've known a couple of people who had lupus, but I didn't know them that well. Seems like they pretty much carried on with their lives, but one guy would occasionally have episodes of some sort where he would get rashes. Once in the 10 years I knew him he had to go to the hospital with lupus-related symptoms of some sort. But he must not have been too sick because when they told him he couldn't smoke in the hospital, he got up, got dressed and walked out.

 

[AllieBaba]

I think it can be really bad, and it's progressive to a point...but it appears to me that the later you are diagnosed, the better the prognosis is...and if your symptoms aren't for the big guns (heart/lung/other organ issues) the chance of living a basically normal life is pretty good.

Here's to hoping!

 

[Kooshdakhaa]

I think it can be really bad, and it's progressive to a point...but it appears to me that the later you are diagnosed, the better the prognosis is...and if your symptoms aren't for the big guns (heart/lung/other organ issues) the chance of living a basically normal life is pretty good.

Here's to hoping!

Here's to hope and the power of positive thinking!

 

[strollingbones]

a co worker was told she has lupus....it has been rough...she had to quit work and has aged a lot

 

[AllieBaba]

Oh great, lol.

And it figures that I would get something that's relatively rare, sheesh.

I meet with the clinician on Tuesday, will know more then. I'm not too concerned at this point, if I have it, I've had it all my life and none of the symptoms have landed me in the hospital. Hopefully we can continue along that line.

 

[JakeStarkey]

AllieBaba, this is a very serious disease.

Do exactly what the doctors suggest. Be careful!

I know several people, including a sister, who have it, and lupus is nothing to mess with.

You have a very good chance of living well for a good, long time.

My thoughts are with you.

 

[AllieBaba]

Thanks dear...I don't know a lot about it yet. I'll wait for the diagnosis. I see a series of visits to a rheumatologist (?) in my future, at any rate. Yuck.

 

[Luissa]

My friends mom has it. I know you are suppose to be careful in the sun and when her's get bad she has to take injections that are not cheap. She lives a pretty normal life, but of course has some daily pain from the disease.
I had a friend a few years ago who has it and she had to take shots every day while pregnant and then they ended up taking the baby early because the pregnancy was so hard on her body.

 

[AllieBaba]

I had two miscarriages back when, this would explain it.

I really have no real pain...I have aches & pains that I just thought were normal routine stuff...I have a thumb that gives me a lot of grief (so ridiculous but ouch) but I don't suffer from fatigue, and have no photosensitivity. I do flush really, really easily and have the butterfly rash thing...again, not severe....it was attributed to rosacea/psoriasis.

So honestly, if I have it, I feel pretty lucky that it's not worse..the reason I went to the clinic was my thumb and a break out that I thought was psoriasis that didn't want to go away...I have had to go in periodically over the last few years to get pain killers, anti inflammatories, and antibiotics which have always worked.

What I do worry about is the increased risk of stroke, because my blood pressure has been getting up there in the last few years (after a lifetime of having really ridiculously low blood pressure), skin cancer, and throat issues. It seems that lupus is associated with repeated throat infections/sore throats. My father died of cancer of the larnyx, and I get sore throats and strep very, very often. It's sort of a relief to know it's a symptom, though...so it's something that can be watched without me feeling like a delusional freak for asking about it, lol.

 

[Luissa]

My friend has what looked like psorasis, along with these spots that looked liked ring worm but they were from the disease.
You should get yourself a blood pressure cuff, that way you can monitor your blood pressure often. The people at my work with high blood pressure have to have their's taken at least once a week.
Hope everything works out.

 

[AllieBaba]

Thanks!

Was hiking out in the hot today, 85 when we left, probably a little warmer when we came back. Yeah, I do seriously flush up but I always have. I don't burn that easily or anything. I have pretty good heat tolerance so long as I have water. In fact, I like it hot. My eyes are very sensitive to light, though. I don't know if that's part of it or not.

Watch, they'll call me in on Tuesday and tell me I don't have it.

 

[Grace]

You're too ornery to let it get you down.

Read up on it, listen to your doctors. You will be ok.

So let it be written...so let it be done. (small attempt at humor)

 

[AllieBaba]

It won't get me down, never fear, I don't work that way....and I'm grateful I don't!

 

[Luissa]

If it makes you feel better my friends mom has lived with Lupus for almost twenty years, she doesn't have liver problems or dementia, and you are probably in better shape then she is.

 

[Ringel05]

Does anyone here live with or know of someone who lives with Lupus? I was tested last week and it looks like I'm positive. I'm not too concerned about it because my symptoms aren't any of the bad ones...I don't have kidney/liver/heart issues, no dementia (so far! Knock on wood!)...I don't suffer from fatigue to amount to anything (except when anyone else would be tired too....) My primary issues are sore recurring sore throat & skin issues (which have been attributed to psoriasis, which I also have) and some joing inflammation.

So I'm not too concerned about the diagnosis as a life changing event, if I have it I've had it for a long time...but it has never really crossed my radar before, and I don't know much about it.

I've been researching it online and like most autoimmune disorders, the symptoms are all over the board.

Beware of full moons........

 

[AllieBaba]

I know, that's what I was thinking of...

And will I grow a beard????

 

[JakeStarkey]

It's claws and fangs that should concern you, AllieBaba.

 

[AllieBaba]

I already have those..

 

[syrenn]

Hugs...

question... do you know what test they ran? If they did not..have them run an ANA. (antinuclearantibody)


yes this can be very serious.... so take good care of yourself Allie and do what they tell you.