Mast Cell Activation Syndrome or Histamine Intolerance

I noticed that you stated you won’t take allergy med to help control your hive. Why is that? I have been on allergy meds since the age of 10 and I am now 59. I would not be alive if it wasn’t for Zyrtec, Sudafed or Benadryl, asterpro. Just curious

I always take some kind of allergy medication. Typically Sudafed and Benadryl. Have been prescribed several that didn’t work. Now, I am taking Montelukast which did not work in the past. But I am also taking Xolair now. Since my Xolair treatments started, my hives have diminished. I have only had little hives on my hands, but not the big painful hives I have been used to for years! My new allergist prescribed it. I was actually sent to her by cardiologists who wanted to see if an autoimmune disorder was causing tachycardia, high blood pressure, edema and breathlessness. Those symptoms remain. Now the cardiologists want to see the results of a recent sleep study to figure out if sleep apnea could be causing the heart issues. They are also considering doing a right cath procedure, which frightens me a little.
Thanks to everyone who has responded with ideas! This is a wonderful community of patients and healthcare providers!

I’m so glad you have gotten some answers for your chronic and painful hives! Does allergist think you have an autoimmune disorder?

Yes. My allergist believes I have some type of autoimmune disorder, but she is unsure about which one. Back to the drawing board.

I’m glad you found out that can help you and try to figure outs what’s wrong with your immune system. I’ve been to four allergist immunologist in the last nine years and none of them can figure out why my immune system is so haywire and allergic to almost every food I put in my mouth + severe environmental allergies . But I’m not giving up!

My daughter also takes a xolair shot every 3 weeks for hives. If she is late, they start flaring again. Have any of your doctors tried Cromolyn Sodium for the gut?

I don't think there are labs for mast cell.

Thanks for chiming in. I do feel as though I must get the shots on time or else I get little hives. No, they have not suggested cromolyn sodium. I will definitely look into it. I also wonder if hormones might play a role.

I also take Sodium Cromolyn. It helped with the fatigue somewhat. Also take Famotidine, Claritin/Allegra, and Montelukast. My trigger is wind. Every little bit helps but nothing has given me back my old life.

Thanks for responding. I remember taking cromolyn sodium
decades ago for asthma. Which type of doctor prescribed it for you? I want to suggest it to my medical team. I am so touched by the resilience of the patients responding on this thread. That, alone, gives me hope.