Two more weeks of waiting...

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answerseeker
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/18/2011 12:36 AM (GMT -6)   
Hello...my coworked told me about this place and I hope it's a good place for me too. smilewinkgrin I had pericarditis almost 15 years or so ago...along with an episode of every single thing that bent being incredibly achy and swollen and hot.  Since then, I would have these "episodes" a couple of times a year.  Sometimes they would last a couple of weeks, sometimes over a month with varying degrees of severity.  The sun is my enemy!  I feel so bad after being out and the rash usually shows up.  But the heaviness and shortness of breath and chest pain combined with the extreme fatigue is the worst.  As time has gone by, it's just gotten so much worse.  Now it's more often than not that I feel like poo. 
 
My primary doctor is so wonderful and just kept telling me we'd figure it out and continued to do tests.  She tried to send me to an interventional cardiologist and I finally went.  I gave her my whole history...including the latest which is my oxygen taking a dive with a walk across the room.  She sent me to a rheumatologist and I got in in only three days.  I think it was divine intervention!  She wasn't the first she recommended, but turned out to be a friend and her first choice as a referral, but she didn't originally try to send me to her because it's a farther drive. ANYWAY!  She took all my blood and made a followup in two weeks.  But today I had some cardiac testing and I have some extra fluid around my heart.  cry    But get this!  The cardio doc went out and called the rhematologist to confer right then...on Friday at 5:15!  They decided to start me on Prednisone 40 mg right away.  She told the cardio doc that she has gotten some blood work back already and she feels she knows "what systemic disease you have."  HELLO! 
 
So I'm a little freaked out and a little relieved to finally be on the track of an answer.  They wouldn't start me on that much Prednisone if they didn't have a good idea about something, right?  I'm concerned that whatever is going on has been running through my body untreated for so many years!  So any ideas?  Feedback?  Knowledge?  Please share!  Thanks...I look forward to getting to know some of you.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/18/2011 9:55 AM (GMT -6)   
Welcome to Healing Well.

That's so wonderful that your doctors are communicating like that!

Prednisone is used for any kind of inflammation, so it might have been first choice for the cardio doc -- and she double checked that it wouldn't harm you!

You are where you are -- can't do anything about what's happened in the past, just try not to worry and move forward. It sounds as though the rheumy can help you and feeling better is a marvelous thing!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/18/2011 9:59 AM (GMT -6)   
Oh, yeah -- take the pred early in the AM - it has a tendency to keep us awake if taken near bedtime -- and some people who are sensitive end up taking a OTC or prescription sleeping aid of some sort.

It will give you terrible carb cravings -- try to avoid white carbs & sugar if your diet allows, and it's easy to gain "prednisone weight" (round face, bloated tummy). It's supposed to drop off when you stop prednsione, but my observation is that it takes a LOT of effort for the tummy part to go away.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 6/18/2011 8:11:10 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/18/2011 4:11 PM (GMT -6)   
I know the feeling of the limbo land. I suffered with it from Feburary until two weeks ago. You were fortunate to be able to get in so quickly! I know it's hard to sit there and have all sorts of thoughts running through your head as you wait. But hang in there...At least you're getting medication right away. I had to wait the six weeks it took for my bloodwork to come back before I could take anything for my pains.
It sounds like you're in good hands.
Joy

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 6/19/2011 12:05 PM (GMT -6)   
I think if you have clear cut and serious symptoms, the easier it is to diagnose. Sounds like you had some good medical help along with good Dr. collaboration. I hope you get well soon. I am sure pericarditis is no fun and scary!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, IBS, Colon resection Nov. 2010, now in remission
inflammator arthritis, ??Overlap or mctd, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, prozac, synthroid, cozar, advair, plaquenil
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed rate

answerseeker
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/21/2011 10:11 PM (GMT -6)   
Thanks for the support!  I'll be the first to admit that I'm not very patient about waiting, but I am hopeful that this will tell me what I need to know.  And from what I can see here, I'm lucky to have gotten things going so relatively quickly now that it's started.  I'm hopefully scared.  Does that make sense to anyone?  I'm still not really feeling better, but I guess I really just started the meds.  Soon, right?
 
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/22/2011 10:39 AM (GMT -6)   
Give the medicine time to work.
Somedays I feel better and my pain is very low, other days I'm miserable. Today my hands are achy.:(
Joy
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