MCAD/MCAS Peas

Delta Dawn, thanks for remembering me!

pants on fire, you need a doctor that will diagnose and treat you CLINICALLY, not based on tests. About 80% of us with MCAS I think it is don't have positive tryptase or genetic tests. But we absolutely have the symptoms and the history.  Usual treatment is  high dose H1 antihistamine, high dose h2 antihistamine, at absolute minimum, then add on antihistamines and other mast cell blockers as needed. I, for instance,  am on cetirizine (zyrtec), omeprazole (was on zantac until it was pulled off market), valium (small dose, mast cell blocker), montelukast, ketotifen (compounded antihistamine drug). This is when I am basically in remission. When I get worse I might add any or all of the following: phenergan and zofran (for nausea, and I take them IV), hydroxizine, benadryl. My dr tried me on methtrexate when I was very ill, and was looking at other drugs, luckily I improved. My daughter's regimen is similar. I hope this shows you how aggressive you need your doctor to be. Without this level of treatment, I believe I would have died from malnutrition. 

Please join the Mast Cell Activation Disorder Forum on Facebook. Hopefully this link will work: FB group. The leader of the group is working tirelessly to prevent those of us without positive tests from being ignored by the medical community. You'll find doctor lists and tons of info, and message me if I can answer any questions for you. I've been dealing with MCAS for about 10 years, and for many years it was hell. No one should go through that.

I have dysautonomia, POTS, inappropriate sinus tachycardia, dermatographia, and MCAS. My 14 year old has slowly displayed symptoms of most of the above and is being monitored/worked up as needed for diagnosis, as well. For symptom control of my dermatographia and MCAS, I was on Allegra, Zyrtec, Singulair, and Benadryl daily. I began to have breakthrough hives and my doctor wanted me off of Benadryl so we trialed Xolair. I am now off of all oral allergy medications and receive two injections (one in each arm) once a month. I’ve been on Xolair for two years and have been thrilled with the benefits and symptom relief. However, it’s not a great permanent solution and I’ve failed attempts at spacing out my injections. Within 6 weeks, I’m back to daily hives. I was diagnosed by clinical presentation over time. I’m so sorry you’re facing potential diagnosis as well. I’ve found my hives to be progressive when untreated and the discomfort would keep me awake at night. Miserable is an understatement. Sending positive energy your way for symptom control and answers ASAP!