Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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VERY SCARED - HUSBAND RECENTLY DX LUPUS

mizkytee
mizkytee
MY HUSBAND WAS JUST DIAGNOSED WITH SLE AND MASSIVE CLOTS IN LUNGS AND IVC. DURING THE CT SCANS OF BOTH, THEY ALSO FOUND DISTENSION IN THE VESSELS OF HIS SPLEEN, A NODULE IN HIS LUNG. I KEEP ASKING COULD THIS JUST BE PAR FOR THE COURSE WITH LUPUS. THE ANSWER IS ALWAYS NO. BUT I KNOW DOCTORS DON'T KNOW EVERYTHING, SO I'M COMING TO YOU: COULD IT JUST BE PART OF THE LUPUS???
AnnNY
AnnNY
Many people with lupus also have antiphospholipid syndrome which causes blood clots. Your husband's doctors are no doubt testing him for this. When there is clots in a number of organs it could be a condition called CAPS. (I'm not a doctor, so do take anything I say as gospel.)

This is a good website that describes antiphospholipid syndrome:

http://www.hughes-syndrome.org/

There are blood thinners that can help him pretty quickly, There are also drugs that will control inflammation. Once he is better he will be put on a regime to help him control his disease.

Sorry you are going through this. This is a scary presentation of lupus, but there is a lot that can be done, and now that they are finding what is wrong with him the doctors can go to work getting him back to better health. So please don't despair.

Here is a good forum for people with Hughes disease (APS).

I'll pray for you and please let us know how he is doing.
AnnNY
AnnNY
This is the forum:

https://healthunlocked.com/hughes-syndrome
nanny1611
nanny1611
AnnNY has given you good advice, so I don't have much to add. I've been suspected as having blood clots, but nothing showed when tested. Also, on a CT scan when I was diagnosed with Polymyositis, they found an aneurysm on one of my spleen vessels. But my primary physician wasn't too concerned. He told my neuro that many people have these. Don't know if that's so, but it hasn't bothered me thus far. Lupus is a scary diagnosis, and it can affect us in many ways. Best wishes to you and your husband.
mizkytee
mizkytee
AnnNY, thank you so much. I always say prayers are the best gift anyone can give us.
AnnNY
AnnNY
Is your husband doing any better today?
SleepyT
SleepyT
I have the APS along with my Lupus. I've had one blood clot and 2 strokes, which are basically blood clots.

It's the worse part of my disease for me, scares the hell out of me. As Ann said they will put him on a medication regiment that will help him manage this. I'm not sure if the ASP tests are like the ANA and other tests for Lupus that show a false negative at times?

Please take care of yourself as well, this disease is very shifty and so scary at times.