(Archived from jysmith - original forum)
jysmith

  Lisa's comments to Brigitte warning her about epi-pens if she has carcinoid syndrome brought up some questions for me.

  Are we going to maintain on this forum that people who are flushing/hiving/swelling, etc. without a firm diagnosis should not use an epi-pen?  That seems to be a sticky problem, making the decision whether or not to use one if you have hives, breathing problems, or throat swelling or ??  Paramedics used epi on me several times before I was accurately diagnosed, and no one ever asked me if I had carcinoid.  I suppose they should have asked.

  Of course in Brigitte's situation, she has a marker for carcinoid, so it's clear that she needs to be cautious.  I'm wondering, though, in the case of someone who hasn't been diagnosed at all, what they should do or allow to be done, besides take oral medicine, if they have a bad episode.  What advice do we give newbies who could be having life-threatening mastocytosis attacks or who could have carcinoid or something unrelated?  Should they refuse epinephrine?  I don't see how anyone can know these things without prior testing.

  The same dilemma has to do with other meds, too.  For example, morphine is allowed in carcinoid patients, but not mast cell disorder patients.  Do we advise to stay away from morphine or not?  Undergoing anesthesia and surgical procedures might be different in masto and other rare disease patients.  What do we advise about those?

  Then there's the problem that there are other disorders/diseases that cause similar symptoms to both carcinoid and mast cell disorders.  Should we recommend an endocrine work-up and a rheumatological work-up as well as checking out the mast cell possibilities?  Heather's flow chart of diagnostics is terrific, but I wonder if there should be some basic newbie information about possible alternate diagnoses and what to be cautious about.

  What do you all think?

 
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Take care, Joan

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"I try to take one day at a time, but sometimes several days attack me at once."
24 November 2010 01:29 AM

(Archived from riverwn2 - original forum)
riverwn2

Thats a great question Joan.. and I was thinking alot about that lately. I think people can try just a few antihistamines OTC safely, just to see if it helps.

As far as the Epi pens... thats very iffy. They cant get one without a Drs prescription, so at least one Dr thinks there is reason for concern--like throat constriction. Throat constriction is such an immediate emergency, if they dont stave it off, they can die before 911 arrives...so I would say, wait to use it IF they havent been diagnosed yet---UNLESS their airway is closing, and/or tongue is swelling (which could block their airway too)  then its the only solution to use it and be alive when helps arrives.

I worry that even people who dont have carcinoids use epi pens then stay home--and they should always go to the ER after using one.

Once they have a diagnosis, then they should know to use it when any symptom of anaphylaxis begins--and go to the ER immediately (I know you know this, this is for the benefit of our newbees reading this)

Just my two cents,
Ramona
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Remember to count your blessings! mastcelldisorders.wallack.us
24 November 2010 11:34 AM