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ValeriaSpain Message
13 Jun 2017, 12:38 PM

Dear All,

Is anyone currently following treatment with Terbutaline?

And did any of you start T&T or Terbutaline only and did not succeed?

Thank you very much!


aporzeca Message
13 Jun 2017, 04:24 PM


For your information, until a decade ago, terbutaline and theophylline were thought to be sometimes effective for the prevention of episodes of SCLS -- for example, I was on them for 4 years, but they had terrible side effects and did not prevent my having more, and more frequent, episodes of SCLS -- but they have since been abandoned by most doctors and patients in favor of IVIG infusions.  A study just published of the experiece of sixty-nine patients included in the European Clarkson disease registry, who were followed during two decades (between January 1997 and March 2016) concludes this: "Five- and 10-year survival rates in patients treated with IVIg were 91% and 77%, respectively, compared to 47% and 37% in patients not treated with IVIg. Patients treated with IVIg were more likely to be free of recurrence, severe recurrence, and alive at the end of follow-up. Furthermore, all but one patient who did not experience a severe relapse were treated with IVIg. Since preventive treatment with IVIg was the strongest factor associated with survival, the use of IVIg is suggested as the first line in prevention therapy. ... Results regarding the efficacy of terbutaline [are mixed and thus] should be considered carefully, and terbutaline could be considered in cases of IVIg failure." Let me know if you'd like to receive a copy, and the summary, which I'm attempting to include in the Disorder Resources section of this website, appears here:

Kimmieroumayah Message
14 Jun 2017, 02:37 AM

Hi Valeria,

     I was diagnosed  01/2012  strictly T&T until  09/2013.  It never really worked. My Immunologist was hesitant to place me on IVIG therapy.   I consulted with a top Hematologist at the MN Mayo Clinic 06/2013. After a three week stay and a trip to the hospital the Expert Hematologist who led my team of doctors during my visit, wrote a letter confirming my diagnosis and recommending monthly IVIG as the best form of treatment.  It took a lot all of work on my part to convince my Dr. to start the IVIG process. Once he decided to begin IVIG, I started on a monthly regiment the equivalent to 1/2 of the recommended amount prescribed. It required loads of hard work and a little push, but I now receive the recommended amount of IVIG.  I also continue to take the T&T Singular and Medrol.

   If I am not mistaken a patient who chronically leaks, differs from a patient who may have suffered a severe episode.  

My frequent ER visits during 2015, combined with all of my blood test results during 2016 show elevated hemoglobin, decreased albumin and a host of other results that indicate I am in a constant state of Capillary Leak.   

 Unfortunately as Arturo mentioned in his podcast, I am being treated by many different specialists and my Immunologist isn't always kept in the loop.  All of my doctors are affiliated with the same hospital, however not all of my specialists use the same lab.  This makes the coordination of my care difficult.      

 I am still my best advocate and will have to do most of the digging before my Immunologist and I get out of this information rut.  This illness is highly uncommon.   New information concerning preferred medical treatment and protocol for ER visits is moving at an accelerated rate.  That is the reason I usually end up behind the wheel.

 If you discover a magic wand that has the ability to turn  Doctors into a teenager excited by massive amounts of extra homework crossed with an adult who loves living on the edge taking risks like a teenager please let me know - and may I please borrow it when you are finished?


ValeriaSpain Message
14 Jun 2017, 11:08 PM

Dear Arturo, 

Thank you very much for your kind response.

I did read the article and shared with both doctors who are currently overseeing my treatment (one of them diagnosed me.)

I mentioned IVIG to them and they said if Terbutaline is working perfectly, why change? There haven't been side effects (only up until the firsts 1,5 months.)

They also said that if I have an attack , IVIg would be started.

As a chronic leaker in result of my first severe attack back in October, 2016, I really wouldn't like to "wait" for another life threatening episode tin order to get an effective treatment.

Do you remember how long did it take to attacks reappear whilst on T & T?

Thank you very much.



pd.- Are you able to sweat? I can't sweat anymore.

ValeriaSpain Message
14 Jun 2017, 11:17 PM

Dear Kim,

Im sorry to know you are going through all this. It's frustrating.

Have you contacted Dr. Druey and told your doc about him? 

Big hug



Kimmieroumayah Message
18 Jun 2017, 08:54 AM


Thank you for your kindness.  I attempt to use humor when I write about my situation.  Please do not think I was being rude, condescending or a whiny complainer when I posted my reply.  

Yes my doctor is aware of Dr. Druey and the NIH, he just isn't interested in consulting them.

Yes I perspire heavily during episodes and I am unable to tolerate heat well. I also stop urinating completely whenever I am having an episode.  

Did your doctor give a valid medical reason for sticking with TNT?  Are you well?  Have you experienced any minor symptoms following the episode in 2016?  

I honestly believe that our best chance to survive this disorder can be achieved when we are fortunate enough to have a competent, committed, open minded Dr. who is willing to correspond with the experts at the NIH.

There is a definite learning curve in the beginning.  I believe it is important to research and learn the medical terminology associated with SCLS.  This will allow you to read and comprehend any lab results performed by your physician and improve your ability to communicate properly with members on this website and medical professionals.  

We all suffer difficulties with our condition.  Some of the members share similar issues while others may experience new or different issues.  That is why this site is so important.  This is a place where we can share information and tell our stories.   

Once again I offer my sincere apology if I offended you in my previous post.  Best Wishes 


Kimmieroumayah Message
18 Jun 2017, 09:05 AM