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Does anyone notice being swollen and barely having to pee some days, then out of the blue you go continuously all day long and lose alot of fluid? Im beginning to notice this is a regular thing.

posted October 14, 2018
A MyLupusTeam Member

My rheumatologist said I'm barely positive but everybody's body reacts differently. My kidney levels are elevated too. I don't like taking these meds. I just don't see how they all can be effective, taking so many.

posted March 2, 2019
A MyLupusTeam Member

Has anyone here had the Avise test done? There is a specific test within the Lupus panel that checks for Lupus Nephritis potential.

It’s called Anti C1q

Has anyone here had this done or know their results?

I tested at 19. Positive is 20. I was not flaring when I had the Avise test done and suspect my C1q levels were higher a couple months earlier when very sick and spilling protein

Everyone having these swelling issues might want to check their Anti C1q. I’d love to know if anyone else is positive or borderline positive

posted February 27, 2019
A MyLupusTeam Member

@A MyLupusTeam Member It does make me feel better to know I’m not alone, tho I’m SO sorry you’re going through this. It’s scary isn’t it? It’s just so wrong....I feel the body just shouldn’t be doing this 😔

I don’t eat salt so it’s not like a salt restricted diet will help. It keeps it from getting worse mind you but isn’t helping take off the water

When I take the diuretics I do wind up passing more fluid (most of the time....sometimes they do nothing which is really scary) but it doesn’t seem to draw it out of my tissue where it seems to be stuck. Instead I get dehydrated, crampy and headachy and I give up on taking them. Maybe I just have to push thru til the body decides to release the fluid?

Comforting hugs are being sent to you. Please let me know what you find out from the doctor. I hope he has answers and I hope this is just a lupus quirk and nothing too scary

posted December 26, 2018 (edited)
A MyLupusTeam Member

I’m feeling rather hopeless. I am now SO bloated that my legs are stiff and skin if stretches taught because of extra water. If I walk around grocery shopping for an hour my socks will leave such a indentation in my ankles and calves that my leg isn’t even recognizable as a leg anymore! My legs literally look to be twice the size they usually are now and it’s so uncomfortable. I’ve gained about 35 pounds and I’m sure the vast majority of that weight is water

The rheumy suggested some diuretics but they didn’t seem to do much, I didn’t give them much of a chance and need to try again. They’re not as fast acting I’ve learned so maybe they have to build up in the system to be effective

Lasix helps, usually, but it leaves me feeling terrible. I get severe headaches taking them or I’ll get Charlie horses. I shouldn’t need medicine to pee tho! No one can tell me what is causing this...if it’s lupus inflammation or a kidney problem. I’m really scared.

posted December 25, 2018
A MyLupusTeam Member

Yes. Lately I have had to wear catheters at night. Pull ups during the day for frequently urges to pee.

posted March 19, 2019

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