Had anaphylaxis 12 weeks ago (tongue swelling, rash, short of breath) to x-ray dye, biphasic then protracted. On 5 antihistamines, 2 mast cell stabilizers and steroids still with some symptoms.Dont know if this is IA or MCAD. ALso now having trouble getting off steroids--?Adrenal insufficiency? Recently switched from prednisone to hydrocortisone. So afraid, don't know what's going to happen. Has anyone experienced this? Miss my old normal life.

Lisa,

Thank you so much for replying. Did your reaction go on this long? How long did it last? How long did you need steroids?

I live in an area in Canada where no one has ever seen a reaction like this and they kept expecting it to stop or thinking it was in my head. It was a combination of my own research and cries for help via email with a good family doctor that got me on the meds I'm on. I just have no idea what to expect from here on in. I was told the IgE tests could give a false negative while I'm on steroids. As far as I know there's no IgE test for Iodine, but I will have the shellfish done. My tests have been otherwise negative. (Tryptase, urine histamine etc though done long after the reaction). I just feel like no one understands and even my family is starting to think I'm crazy.  I hope the symptoms will stop someday. I'm still getting chest tightness, occasional rash and GI upset. And, now they think  my adrenal glands might've failed because I didn't tolerate the last steroid taper, so I'm getting scary symptoms from that too. I haven't had the carcinoid work-up as I was essentially asymptomatic prior to this, but maybe I should have it done.

It's important to rule out several disorders/diseases with similar symptoms, such as carcinoid syndrome and pheochromocytoma.  Once those are ruled out, I would recommend you find a mast cell disorder specialist and make an appointment.  You can check under the doctors topic and see if there's anyone near you in Canada, but you may need to travel quite a distance to find someone knowledgeable.  It'll be worth it!

I think you might be under-medicated if you're still having so many break-through symptoms.  If you can get Allegra (fexofenadine), you could try that.  Most MC patients take 180 mg. once or twice a day.  Some alternate Zyrtec/Reactine (same thing) with the Allegra.  I take Allegra in the a.m. and Zyrtec at night.  Also, 30 mg. of a steroid/day would be an odd dose in the U.S.  If the symptoms are extremely bad, we would be started on 60 mg. and then taper down over a longer time, such as 60-60-40-40-30-30-20-20-10-10-5-5-off.  50 might be put in between 60 or 40 if the doctor wanted a longer taper.

A very important thing to do is to look up the low histamine diet (at the ICUS website) online, and stick to it religiously.  Foods can be a really serious problem.  Some are high in histamine or can cause direct mast cell degranulation, such as tomatoes, eggplant, fin fish, spinach, pumpkin, pineapple, and many more.

The ICUS list tells you exactly what foods you can eat and what to avoid.  Leftovers are a serious problem, especially meats, as the bacteria in them produce histamine in a very short time.  If you freeze leftovers immediately in portions, you can thaw them out whenever you want them.  Stay on the diet for at least a month and then you can try to add back one food every few days to see what does and doesn't cause you to react.

Joan, I just realized that I called you Lisa, sorry! How long did your reactions last?

Yes I am currently trying a slower taper. But still have occasional flushing, rash, chest tightness...did that ever happen to you this long after your initial reaction (12 weeks). That seems to be the part that's baffling everyone.

I was tested in the past (cats, birch tree, pollen positive) with skin prick. And had blood test and was negative to Latex and food mix but was on steroids and apparently need to repeat that test once off. Can't have any skin testing because I'm sensitized, I have dermatographism and pressure urticaria off and on throughout the day. My tryptase and urine histamine were normal a couple of weeks after the initial reaction. I just hope I can manage to get off the steroids and still manage the symptoms. The symptoms I have now are liveable. More of just a nuisance the level they're at compared to what I've been through.

You might want to tell your doctor that you'd like to taper slower.  With mast cells, sometimes you have to "come in under the radar" in order to keep them calm and quiet.  If they want you to reduce by 10, tell them you'd prefer to reduce by 5. If that doesn't work, try 2 1/2.  Hope that helps.

Susan,

Thanks so much for replying. It is nice to hear that you've been through something similar. How did it all start for you? Do you have a diagnosis? MCAD? Did you ever have any lab abnormalities?


I just hit the three month mark and I am happy that I am still alive and am starting to live a little, but am definitely not myself/can't fully function. One of the biggest issues right now is tachycardia--which I see you mentioned. When I stand up my heart rate goes to 110-120. I can get it to come down if I walk around slowly to 90s, but if it's too hot out I can't get my heart rate down and feel like I'm going to pass out. I don't know if this tachycardia is my lack of adrenal function, persistent allergy or what! But, the good thing is, since I've switched to hydrocortisone I have more energy. I started at 30 mg and yesterday dropped to 25 mg and am still doing well other than the tachycardia. The plan is to try another 5 mg in 5 days if I do well. I REALLY hope I can get off these steroids.

Susan do you have to take medication all of the time or only when you have symptoms?  I'd love to hear more about what you've gone through as no ones seems to know much about this. Did you find doctors who are knowledgable? Did you find you were really scared of everything for awhile? I'm afraid to eat things or go places in case I flare-up.

I get occasional chest tightness and itching right now but much better than it was.

Joan,

thanks for the slow taper advice. I've been okay with this 5 mg drop but if that changes I will go back up and try 2.5 the next time. I  am SO terrified the first day of my taper.

Great to hear from all of you!