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Someone else has to be like me!! Help

Beverley Message
25 Feb 2017, 02:02 PM

I have been told i seem to have capillary leak syndrome but with a twist that my blood pressure plays yoyo, and i keep fluid well after the flareup (dont know what to call it. I had to have a pericardial window put in to stop fluid squashing my heart and my lungs fill with fluid so often i feel like a kettle. I am on diuretics everyday and just started Theophylline and montelukast. Is there anyone like me here??? I also seem to have a lupus type syndrom, or is that a combination of symptoms of this?

AnthonyL Message
8 May 2017, 09:05 AM

I think I may have sent you a pm a few weeks ago. Yes, I do have a chronic form of this condition, although I'm not sure if it's SCLS as I haven't yet experinced a life threatening crisis. I have become increasinlgly disabled from it, however, and hospitalized many times for dehydration/hypovolemia due to fluid loss from the swelling. My docs are positive that I am third spacing fluids from leaky capillaries, but they're entirely perplexed about the underlying cause and how to go about treatning it. They're talking about starting me on Theophylline at the moment. I've been dealing with this for years and it's taken a heavy toll. I haven't ever met anyone with a condtion like this and neither have my doctors (and I've seen many of them at this point). All the common causes of genralzied edema have been ruled out, so I'm sort of left hanging with my life on hold until they can figure out how to diagnose or at least control the swelling.

ValeriaSpain Message
22 May 2017, 07:56 AM


I have been diagnosed with chronic SCLS too.

I did have an acute attack in October 2016.

No organ damage fortunately.

I have been following treatment since Jan 31st, 2017

With no other episode rather than some symptoms and 2-3 lbs up and down every two weeks.

27mg of Terbutaline, 20mg of Bilastine (antihistaminic) and 200mg of spironolactone are currently keeping me safe.

Docs are positive I'll be in remission 14 months following this treatment. Hopefully they are right.

IvIg has been discussed in the event of another episode.  I truly hope I don't get there.