I respect the research people on the forum do and have learned a lot from it about how to be safer in my everyday life.   There's no question there are potential hidden dangers for some mast cell patients in vaccines, medicines, cleaning products, etc.  When we take any medicine in any form, it's also important to remember these decisions must be made with risk vs. benefits in mind.  Common sense would be to use all reasonable caution, but not to postpone or refuse a potentially life-saving procedure or medicine because of fear.  The flu shot may not be life-saving for everyone, but it is for some people.  

  Other decisions will need to be made in a variety of situations throughout our lives, including procedures to follow to be safe if a surgery is needed, if radiological studies need to be done, if chemotherapy is necessary.  Unfortunately, we have a disease that can increase our risks to some degree in these and other instances, but it doesn't need to negate the benefits if we're cautious and plan ahead.

  As for the flu, if you've had complications from flu in the past, mast cell-related or not, a shot can be given in a way to minimize risks for many people.  Still, some people may be too reactive to take one.  This should be a decision between doctor and patient.  Your local doctor can contact Dr. Akin, Dr. Castells, or Dr. Afrin for more information specifically related to your case, which is what my doctor did.

  I've posted part of this before, but for those who are concerned about the potential health threat from flu and who want to try a flu shot, here are some suggestions that might help you be safer.  The pre-and post-shot medications also apply to other immunizations, but do double check with your doctor.

• Pre- and post- medicate before and after a flu shot.  The Boston mast cell specialists recommend that MC patients take 25 mg. Benadryl (or equivalent antihistamine), 1 hour before any vaccine and the same dose 6 hours and 12 hours later.  This is in addition to other meds the person normally takes.  If I weren't already taking an H2 antihistamine twice a day, I'd take one of those, too.  (My doctor contacted Dr. Akin and Castells, and this was their pre-medication advice.)

• Talk with your doctor about your vaccine concerns, and find out whether you can have part of a shot on one day and part on another.  For a number of years, my daughter was given half a flu shot one day and the other half a month later, due to a prior reaction.  As it turned out, she now takes the whole shot at once with no problem.  You might be able to take a small part of a shot, wait an hour to see if you react, and then take the rest if all is well.

• Obviously, if there are additives to which you react, ask your doctor whether you should still take the shot or if it can be safely taken with additional pre-meds or if you should skip it entirely.

• There are several versions of the flu vaccine.  It may be safest to take the killed vaccine by injection.  I don't think the inhaled version or other live vaccine would be a good idea for MC people, but an expert (Dr. Akin, Castells, or Afrin, e.g.) can advise on that.  The inhaled one is definitely contraindicated for people with asthma or other lung disease.

• If it's a pneumonia vaccine, have titers checked before having the shot.

• Have the shot on a day when you're doing relatively well.  If you are flaring, wait until a day when you feel better.  Never take a vaccine when you are ill.  Be careful to avoid possible triggers before and the day of your shot.

• If you have had a severe case of the flu in the past, or if you've had severe complications from a mast cell reaction to the flu or vaccine, discuss this with your doctor before you make a decision whether or not to take the vaccination.

• Remember that meds and additives on lists of mast cell degranulators (foods, too) are specific to individual patients.  What might degranulate me, might be just fine for you, and vice versa.

For more information about Guillain-Barre' Syndrome, which Lynn mentioned, here is a link to the CDC website that explains the syndrome, it's causes and effects.  I haven't seen anything in print that would indicate that mast cell patients are more susceptible to Guillain-Barre' than the general population, however, it's a good question for a mast cell expert.  

 [url]http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm/url]

If I understand correctly, one takes the usual long acting h1 antihistamine the day of the procedure/vaccine (in my daughter's case it is claritin) and the h2 inhibitor (my daughter takes Pepcid).  In addition an extra h1 antihistamine that is fast acting--Benadryl 25 mgm is taken 1 hour before the procedure.  Then Benadryl is taken again 6 hrs and 12 hrs after the procedure.  
thank you for the clarification.  madelyn