View Full Version : Pericarditis, CREST Syndrome and MCTD
03-09-2007, 05:31 PM
Well, I'm back from my week at Mayo Clinic. Lots of tests; lots of doctors. My final consult with their rheumatology department said I don't fit in one 'box' very well. Not uncommon, of course. I have all of the symptoms of CREST (except the calcinosis) and I also have symptoms of SLE. So, we'll likely call it mixed connective tissue disease, meaning that I have more than one autoimmune disease. Add to that the diagnosis of Sjogren's Syndrome, and it makes for lots of interesting symptoms. :roll: The big news is a new approach to my recurrent pericarditis. I'm on colchicine now - AT LAST! The cardiologist is very hopeful it will work, even though most of the testing has been on idiopathic pericarditis, and not autoimmine pericarditis. And, we're tapering my prednisone! WIth my history, they want to take it down 1mg a month, so I'll be on it for a while yet. Still, it's a reduction - I'll take it! I learned so much, and I'm hopeful that I'll be in better control of my own health now. It was a longggg week, though and I'm exhausted. But, I'm thankful I had the chance to get that kind of examination.
03-09-2007, 05:41 PM
I'm so glad that your appointment went so well! :D
Please keep us posted on how you do on the new med.!
Keep well and God bless! :)
03-10-2007, 06:49 PM
Welcome back, Jody - glad your appointment went so helpful. Don't you just love it when the doctors can't figure out what "box" you fit into? The billing clerks must hate people like us because it's so hard to come up with an ICD code that fits. I'm really glad you don't have calcinosis - those things hurt like the dickens when they break. I am SO Hopeful that the colchicine will do the trick and finally get your pericarditis under control. Please keep us posted. I know you're impatient to reduce your prednisone, but dropping it slowly is the best way to go, even though it's frustrating.
Have you seen any warm weather yet? It's been so cold, I don't see how you're managing to function.
03-10-2007, 07:15 PM
Hi Jody -
It sounds like even though it was a hard week, it ended with some hope. I really hope this new medicine helps your pericarditis.
Good Luck !! And hugs to you!
03-11-2007, 12:25 PM
Thanks for the well wishes, Missy.
I AM hopeful, for the first time in a while. I know I have to be patient, Marycain, about the prednisone and I know slow and steady is the way to go. I'm just so glad to have some answers, even if I don't fit in a box! The wonderful thing about Mayo is having all of the various doctor's results going to one-well informed practitioner who can then put them into a game plan. What a novel idea - all the docs working together! I'll keep you all posted as things progress.
The weather is GREAT this weekend. It's nearly 55 degrees today, and what snow we had is melting like crazy. You can hear the water running under the snow banks. Some of our spring birds are back already. Spring really brings out the red squirrels and they are taking over the place. I'm afraid my husband will have to trap and relocate some of them - little buggers chew on the siding. Hope the animal rights folks don't hear about it! :lol:
03-11-2007, 01:41 PM
Hey, I'll trade you some gray or white squirrels for some red ones - we're overrun with the other two but not a single red squirrel, and they are my favorites. We do have some red foxes, unfortunately they think our ducks are a walking lunch buffet, so we try to keep them discouraged from coming around.
03-11-2007, 06:40 PM
Funny - we had no gray squirrels (or black squirrels) for the first 5 or so years we lived here. Just red squirrels - dozens of them. Now we have all three. I've never seen a white squirrel, though. The red squirrels are so gutsy - they try to chase off even the biggest grays. And they scold us as we walk from the house to garage or down the driveway. They even throw pine cones at us when we walk under the trees. So funny! And, they build tunnels in the snow. It's fun to watch them pop up in one place, dive down in the snow and pop up in another! Just like prairie dogs. I guess I do like red squirrels after all! :lol:
03-11-2007, 08:29 PM
The white ones are fairly common in this area - they are not "albino" because they have black eyes, but I've no idea where they came from originally.
We also have flying squirrels, which are fun to watch because they look like furry hang gliders. But my favorite are the deer - although I wish there weren't quite so many because they are such a traffic hazard. And they also carry ticks, which are a big health problem around here.
03-12-2007, 08:39 AM
We have a ton of deer here, but I"ve never seen a white squirrel before!
03-12-2007, 09:08 AM
I think it's a recessive gene of some kind - they probably thrive around here because there is a lot of food and not many natural predators - I would think the white coloring would be a disadvantage in an area with a lot of predators like eagles or hawks because they stand out so much. Ours are spoiled rotten - they have their own feeder, and will come and "chuk" at us outside the kitchen window when the feeder is empty. Luckily the dog we adopted doesn't seem to have any "hunting" instinct so she never chases them. I'm just hoping this year there aren't any orphaned "wildlings" to raise - I'm getting too old to get up every two hours to bottlefeed a baby squirrel or a fawn.
:multi: Yahhhh! Jody!!!
What a great way to start off your spring! Isnt that nice, when you have a group of 'special' docs to put their heads together and form a plan! Thats how it is here at the UC Davis Medical Center......
What dose of colchicine are you going to be on? And what is CREST?
I am soooo glad you had a good visit with the Mayo clinic, and you are off on a new plan A!!
Sounds like the two of us will be lowering our pred together, keeping our spirits bright, and hoping the pericarditis never comes back!!!
03-12-2007, 12:25 PM
Kimb, here's a link to a Mayo Clinic article that explains CREST in detail - Jody, this might be helpful for you too -
03-12-2007, 03:45 PM
Thanks, Kim! Been meaning to email you, so I'm glad you caught the post. It IS good to have some answers. I have a few more symptoms to worry about, but at least they're identified and I think I have a game plan. I'm on 0.6mg of colchicine a day right now. And thanks, Marycain. I did have that info - printed it right away! I also found a lot of info on a major scleroderma website:
CREST is a form of limited scleroderma, so this website has a lot of info on it. I'm still a little nervous about how to manage all of the different diseases - but I guess that's nothing new to most folks with autoimmune disease. It seems to often happen in multiples!
03-12-2007, 04:06 PM
I have the diffuse form of scleroderma as well as lupus, so mine is technically classified as an "overlap disorder" - lupus, scleroderma, sjogrens. I do have the calcinoses, reynauds, and esophageal problems, but the skin tightening is more widespread than with CREST, it's not limited to my fingers. The fun part is that some of the meds for lupus can actually make scleroderma worse, and vice versa, so having both does limit your treatment options some.
03-13-2007, 03:22 PM
You really have a lot to deal with, Marycain. I know I'm fortunate that I have limited scleroderma and not the diffuse form. The other symptoms of CREST are pretty easily managed. I'll have a swallowing test done tomorrow (the "E" in CREST) and then a GI workup. I am having difficulty swallowing and SOME of my chest pain after my last bout of pericarditis may have been esophageal in nature. So many things to think about! Diagnosis of autoimmune disorders is such a 'crap shoot.' My rheumatologist is careful to remind me that once you have an autoimmune disease, it's very common to see the overlap you talk about, Marycain. New symptoms can crop up anytime. She did say, though, that it may mean I don't have 'full blown' lupus right now. That suits me just fine!
03-13-2007, 03:37 PM
Actually I've been really lucky with the scleroderma - it hasn't spread much since the initial diagnosis, and the cytoxan for the lupus seems to keep it under control as well. I have one really bad "patch" on my leg, but it isn't close to the joints, so it's more disfiguring than anything else. And with a lot of the new cosmetics available, it's no big deal to cover it. Like you, the esophageal problems seem to be the biggest pain - I've had some lung problems but the docs aren't sure if that's the lupus or the scleroderma. The thing I find frustrating is how specialized even the "subspecialists" seem to be anymore - my rheumatologist deals most with scleroderma patients - he has a few lupus patients - and he tends to focus on the scleroderma even when the lupus is what's causing the most symptoms.
03-13-2007, 04:16 PM
I worry about that 'specialization', too. I have a rheumatologist that specializes in Sjogren's and my primary rheumatologist focuses mostly on lupus. I want to be sure that all the symptoms are looked at without assuming that they're one thing or another. I keep doing my own research (with the help of this great forum!) and ask lots of questions. I hope that's enough.