Two more weeks of waiting...

Hello...my coworked told me about this place and I hope it's a good place for me too. 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.     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.

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.

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!!!

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.:(