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mnjodette
10-11-2006, 03:48 AM
I've been back in the ER with another bout of pericardial effusion (fluid in the sac around the heart.) My doc keeps trying to 'wean' me off prednisone, but everytime I drop down this comes back. This is my fourth trip to the ER (didn't admit me this time, thank God.) I'm on methotrexate which the doc hoped would help me get off steroids. Now I'm back up to 40mg of prednisone a day again. Has anyone experienced recurring pericardial effusion? What's your doc say? Any 'magic' meds that seem to be working? This can be dangerous if it goes on (no kidding) and I'm getting scared. It's been 5 months.....help!

MARYCAIN
10-11-2006, 08:20 AM
I've been through this several times with both pericardial and pleural effusions - I had to be "tapped" so many times I felt like a sieve. Are you on immunosuppresants or other lupus meds other than prednisone? It may be that your lupus needs to be treated differently. After several hospitalizations, my doctor prescribed a low dose of Colchicine in addition to my normal lupus medicines, and this seems to have finally worked for me.

mnjodette
10-11-2006, 11:53 AM
Thanks for the reply, MARYCAIN. I've been on Plaquenil for quite a while; and neurontin for nerve pain. I've been on methotrexate for about four weeks now, which was supposed to help me 'wean' from prednisone and control the pericarditis and effusion. Doc said if that doesn't work, we'll try something else like Imuron or another immunosuppresant. I was on Colchicine after the first hospitalization, and it didn't seem to work. That's when they began to suspect autoimmune disease and started the battery of tests. No 'tapping' required yet, as the big IV dose of prednisone has seemed to work each time. I'm becoming really sensitive to the symptoms so I go in right away. Getting to know the ER docs and nurses by name now...isn't that special?

mnjodette
10-13-2006, 02:18 PM
My rheumatologist is referring me to a cardiologist for an assessment because of the recurrent pericarditis. She mentioned a pericardial window may be an option. Has anyone had this procedure done? I understand they go in and create an opening for fluid to drain when it builds up. The risk, my doc says, is that if inflammation keeps happening, eventually the pericardium will become rigid and it won't expand with the fluid. That could constrict the heart. Sounds not-so-good to me.

MARYCAIN
10-13-2006, 02:56 PM
I saw a cardiologist about this procedure - as it was described to me, it can be done under local anesthesia and is considered a very safe procedure with low incidence of complications. It wasn't an option for me because of my blood clotting problems, but since you're having a recurring problem and preventative meds don't work for you, it sounds like a good option. There is one woman in my local support group who had it done and to my knowledge she has not had any recurrence of the pericarditis. She has the "constrictive" form of pericarditis, I'm not sure of the details, but it was affecting her heart function, and the surgery seemed to help her breathing and stamina.

mnjodette
10-14-2006, 04:02 AM
Thanks for the info, marycain. I like hearing about a 'real' experience (even second hand.) I know I can't keep having this problem, long term, so I expect they'll want to do something.

Liame
10-14-2006, 03:12 PM
I had a pericardial window as part of emergency surgery for a pericardial effusion. That was done under general anesthesia. I believe there are several ways to do the pericardial window, so you'll need to check which kind your doctor is planning to do.

mnjodette
10-15-2006, 03:29 AM
Thanks, Liame. I'll see the cardiologist in about two weeks and I'm sure we'll discuss. Nice to know there are a couple of options.