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NurseSusan
02-11-2013, 01:36 PM
So, I went back to the rheumatologist today... Completely expecting her to say, "You have SLE."
But, of course it couldn't be that simple. (Things with me never can be I guess)
She said that I definitely have Lupus of the skin, and probably have SLE, but my WBC and Platelet counts are normal so she isn't 100% positive.
But, I do have large amounts of blood in my urine, have pleurisy and pericarditis, arthritis in all joints, etc... (Sounds like SLE to me)
Anyways, she said I needed Plaquenil, but because I have cardiomyopathy I can't take it. UGH.
Also, she stated that I have pulmonary hypertension, which means that not only do I probably have SLE, I most likely have MCTD.
Anyone else here with Mixed Connective Tissue Disease?
Is there different treatment than Lupus alone?
Thanks!
Susan

steve.b
02-11-2013, 10:25 PM
this is not always the case........

by saying mixed it can mean that you have more than 1 or not enough to determine which one.
mctd is sometimes used when there is not enough evidence to point definetally to a particular condition.

thankfully the medication does not change a lot.
has she offered an option to plaquenil.

NurseSusan
02-12-2013, 04:56 AM
Oh ok... Thanks for the info.
No, I asked what other treatments are there, and she said that she only gives steroids with a very bad flare or if you are in end stage organ failure. She didn't offer any other medication at this time.
Just told me to be sure to wear sunscreen at all times (Which I've been doing for 2 months now) And it has helped a lot with the rashes and fatigue, but I still get joint pain and chest pains, etc.
She repeated my urine yesterday and said that if it showed blood and/or protein this time, she "might" give me the diagnosis of SLE.
It is all very confusing.

jmail
02-12-2013, 04:33 PM
Does the doc say what the cardiomyopathy is from? I don't understand what the relation between the cardiomyopathy and plaquenil is. Did the doc explain?

NurseSusan
02-12-2013, 09:29 PM
No, I got my records from the heart hospital I go to... I have a long history of heart arrhythmias, that were undiagnosed for 10+ years.
I'm assuming they over time caused heart damage? I'm not sure.
All I know is on my records, the cardiologist wrote "Primary diagnosis: Cardiomyopathy"
But no one has ever discussed it with me.
She said that Plaquenil has a possible side effect of myopathies... And once I told her that I had the diagnosis of cardiomyopathy, she said I can't take it or could make it worse, and I could ultimately go into heart failure.