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Pericarditis and Lupus

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Posted 1/26/2011 2:39 AM (GMT 0)
Does anyone else have Pericarditis due to their Lupus? I have been suffering from Pericarditis for 5 years now. My doctor recently just told me that they have exhausted all medications to get rid of my Pericarditis and that I should consider Pericardial Stripping surgery.

What treatment options have you tried so far to get rid of Pericarditis?
Posted 1/26/2011 2:20 PM (GMT 0)
Hi! Wanted you to know that you arent alone with the pericarditis. It sure can be painful huh? I too have had pericarditis for 5 years but mine has been off and on symptoms not constant. I first got diagnosed with this when I had to be hospitalized with a large percardial effusion and a pleural effusion. Spent 5 days in hospital with 2 of those in icu. I have tried pretty much all the common meds for this disease. Methotrexate, colchicine, 6mp, immuran, cellcept. Right now we can keep symptoms somewhat calm by using a wide array of meds. My drug cocktail is colchicine, cellcept 1500mg 2 times a day, prednisone varies 10 to 20 mg according to flares, plaquinel, quinacrine, along with other maintenace drugs. I havent been able to get off prednisone for 5 years so last year I had reclast infusion for bone protection. Just basically living life one day at a time and trying to keep a positve attitude. Dont know if this helped ypu at all just wanted to tell you what we have tried for me.
Posted 1/26/2011 9:34 PM (GMT 0)
Yes your post was helpful!

I too have tried Prednisone, Imuran, Cellcept, Colchicine and currently trying Methotrexate. Right now I am on 5-10mg of Prednisone, depending on how I feel that day, 200mg of Plaquenil twice a day, 15mg/week of Methotrexate and 800mg of Ibuprofen. This medication combo does keep my Pericarditis somewhat under control, but I still have pain and have to sleep sitting up every night! My Pericarditis has been getting more painful throughout the years, so I'm scared its going to get worse and not better and I will have to be on all these drugs for a long period of time. If it wasn't for the Pericarditis I would be able to get off most of these meds.

I'm just looking for some relief and a good nights rest. Surgery sounds scary and I don't want to consider it unless its the only way of getting rid of my Pericarditis.
Posted 1/27/2011 1:20 PM (GMT 0)
I know exactly how you feel. I am in the same situation as you. I have never been able to get off steroids since I started them cause every time I get below 10 then I mess up again. I have been dealing with a flare now for the last 2 months. Went up to 20 and then tapered a half a pill every week but now that I got down to 12.5mgs my symptoms returned and back up to 20 again.

It weird but any strenous exercise messes me up. I used to walk on my treadmill for 5 miles a day. Now if I do 15 minutes a day I get pericarditis or even yard work or excessive house work. I have to pace myself a lot more slowly and not worry about how long its takes me to be able to get things done.

Along with pericarditis I sometimes get pleurisy and joint aches if I let things go to long without upping the steroids.

I was told that I might need a pericardial window but that hasnt had to happen. I dont have medical insurance so could never afford that operation so this is my only option at this time. Are you being followed by a cardiologist too? I sometimes get request from my rheumatologist to get checked by him but he says so far my heart is strong.

Well lets stay strong and never give up the fight . Keep positive as much as you can. It helps me to deal with things I cannot change. People are always telling me that I am always a calm peaceful person and that is true. 

Posted 1/31/2011 7:56 PM (GMT 0)
I actually just went to go see a new Cardiologist this past month at Northwestern University (I live in Chicago). This new cardiologist I saw said I have tried all the medications she would recommend, so now she thinks the Pericardial Stripping Surgery is my next option. My Rheumatologist says she doesn't want to be more aggressive with other immunosuppresants since my Lupus seems to be under control. I'm going to an MRI of the heart next Monday to get a closer look at the heart to see how inflamed the lining is and if there is any scarring on my heart due to the Pericarditis.

I'm typically a very strong and positive person and trying to stay positive through this whole ordeal. Surgery, specifically open heart surgery seems very extreme and scary especially at the age of 31, but I also am so tired of dealing with this Pericarditis.

I guess after next week's MRI I should have more information and see if surgery is really the next step in this crazy journey to get rid of my Pericarditis.
Posted 1/31/2011 9:48 PM (GMT 0)
I wish nothing but good things for you regarding this pericarditis. It really is scary to deal with and especially the unknown. I dont like the thought of heart surgery either. Let us know the results of all your tests when you find out. Oh just in case you were curious in live in texas and love my rheumatologist. He is going to put me in the long term drug trial for benlysta if it ever gets approved for the U.S. That way my expenses will be paid and he thinks it might help.

You may have already posted on the heart forum but they have people there who have had the pericardial stripping and lots of information there. 

Posted 2/1/2011 6:37 PM (GMT 0)
Yes I will definitely let you know once I get the results from my MRI. Thank you so much for the posts and support. I haven't been on the heart forum yet, but will go there today and check it out to find out more about the Pericardial Stripping surgery.

Hope you are feeling well and staying strong.
Posted 2/4/2011 3:47 AM (GMT 0)
Yeah I hear ya! I have been dealing with it for 2 years now... I had an emergency surgery, Replace a valve, repaired a valve and a partial paricardiectamy.. but to be honest the recovery wasnt as bad as I thought it was going to be..
Posted 2/4/2011 8:17 PM (GMT 0)
What exactly is a Paricardiectamy? Is that the same thing as the Pericadial Stripping Surgery or something different?
Posted 2/4/2011 8:55 PM (GMT 0)
well the paricardiectomy is when they take part of the pericardium out and the stripping is when they take a long line (strip) of the Myocardium out... to be honest I really dont know what that means besides " Hey your taking some muscle out of my heart" lol not so fun...
Posted 2/10/2011 8:07 AM (GMT 0)
Hi, I have had lupus for 20 years, and it caused kidney failure, which led to liver failure at the time (lupoid hepatitis) that got better later, I had a TIA, then went on dialysis and had a stroke type condition (hypertensive encephalopathy), and then the heart and lung failure (pericarditis) which led to a pericardectomy, the removal of the sac around the heart and something also done to the lung, so fluid could not longer collect there. It fixed the problem permanently. I got a kidney transplant 6 months ago yesterday, and it has helped a lot. I take the immunosuppressants which seem to help the other problems I had that I didn't even know were from my lupus/immune system, like problems with certain foods, and other things I was oversensitive to that now can't bother me much. Anyway, I just wanted to mention a book that I think every lupus patient or other patient with any rheumatic disease should read: The New Arthritis Breakthrough, by Henry Scammell, found at bookstores, library, Amazon.com, etc. And a website on the same subject, RoadBack.org. This will open your eyes to another aspect of the disease, and treatment option, that people are seldom made aware of, but is every bit valid, and was discovered 60 years ago. They use it at the Mayo Clinic for scleroderma, another, even deadlier autoimmune disease. And take flax oil to try to prevent the lupus kidney damage - read about the study they did on that (Google it). God bless my lupie friends! Sarah
Posted 2/13/2011 8:50 PM (GMT 0)
Wow Sarah you have been through a lot. Thanks for sharing and i'm happy things are better for you now. I will definitely buy the book you recommended...thanks for passing it along. Stay strong and keep positive.
Posted 5/6/2011 12:53 PM (GMT 0)
I was hoping that this thread would be updated by the OP if it got bumped. Otherwise if anyone has any more to add to this discussion that would be great too! idea

Thanks,
Kerry
(of the undiagnosed sector still)
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