Hello all,
I had a really great visit with Dr. Lawrence Afrin in South Carolina. What an incredible mast cell specialist!!!! I would highly recommend him. He is great at corresponding with you via email and consults with your doctor as well. And to boot he had a 7 page synopsis for me of his thoughts, recommendations, meds to try, etc. within a day of seeing him emailed to me along with a letter stating full disability for me. What a doctor! I have since started singulair 10 mg twice a day and that has helped me tremendously. And he told me if I had a really bad reaction to something I could take up to 100 mg of benadryl every 2-3 hours. I'm only 100 pounds so I was floored when he told me that! I also can't believe the problems mast cells can cause....pots/dysautonomia, healing problems, being prone to infections, rotting teeth, cancer, etc. I was very pleased with him as a doctor and he emailed me a full 7 pages plus a letter for my disability case. He has an incredibly knowledgeable nurse as well....Kathy. She told me to give new mast cell meds a chance for a couple days because new meds aggravate the mast cells and they get stirred up for the first few days and after that they settle down. 1-2 weeks at least to see if a new med is working or not and they are only to be started low dose one at a time.And just to throw this in there, the mast cell specialists in Boston wouldn't help me at all over the phone or by email until they saw me in person first. Dr. Afrin was willing to work with my doctor on multiple occasions plus consult with me by email several times prior to me even coming there. There is not enough good said about this doctor and I want to spread the word.

Are mast cell problems hereditary? Genetic transmission is rare BUT what is inherited is some unknown susceptibility factor. That unknown susceptibility factor is transmitted and that in concert with some exposure or trigger (surgery, medication, exposure to some environmental stimulus, car accident, etc.) results in the development of mutations of mast cells. It is not uncommon for mast cell activation syndrome to be hereditary.

I know it's a bit wordy but it's nice to see the types of meds being used for the mast cell disorders---
Medications recommended for mast cell disorders in his exact words:
"She should immediately escalate antihistamine therapy from her current low-dose scheduled H1 blocker to high-dose scheduled H1 and H2 blockers (e.g., loratadine 10-20 mg bid, as tolerated, and famotidine 40-80 mg bid, as tolerated). If she tolerates another non-sedating H1 blocker better than loratadine, or another H2 blocker better than famotidine, that's fine, though loratadine and famotidine (relative to the other drugs in their classes) are thought to have the fewest
interactions with other drugs. Doxepin, too, can sometimes be helpful in controlling histaminic effects such as pruritus and headache(typically 25-50 mg bid-tid). Other pharmacologic considerations that may need to be entertained over time include NSAIDs (e.g., aspirin(relatively high dose (e.g., 650-1300 mg bid-qid), targeting a plasma salicylate level of 20-30 mg/dl, or as tolerated), or similarly high-dose ibuprofen (up to 3200 mg/d), naproxen, celecoxib (100-300 mg bid)), benzodiazepines (e.g., lorazepam (0.25-1 mg bid-qid), clonazepam,alprazolam), leukotriene antagonists (e.g., montelukast 10 mg bid), oral
cromolyn (100-200 mg bid-qid), nebulized cromolyn (20 mg bid-qid), tyrosine kinase inhibitors (e.g., imatinib 100-400 mg/d, dasatinib 20-70 mg/d, nilotinib 100-200 mg bid), hydroxyurea, azathioprine,cyclosporine, mycophenolate, prednisone and other steroids, PEG-interferon, thalidomide, cladribine, cyclophosphamide, taxanes,daclizumab, or alemtuzumab. Omalizumab, too, has been demonstrated to have some utility in this disease regardless of whether the IgE level is elevated. mTOR inhibitors (e.g., sirolimus, everolimus) in theory might be beneficial, but one small study to date of everolimus showed no benefit. Also, given that activated KIT drives activation of the JAK/STAT pathway which is thought to drive many downstream effects
including assorted constitutional symptoms, the forthcoming JAK inhibitors may eventually prove to have some utility, too."

Hey Jared,

I'm really so glad that you got to see Dr. Afrin!!   That's terrific!!!   I TOLD you that you could handle those higher doses of antihistamines, but don't worry, we ALL end up doing this very same thing cause it's really very mind blowing, even to our doctors as to how much antihistamines we end up taking!!    I had one doctor ask me "DOESN'T ALL THAT ALLEGRA MAKE YOU SLEEPY?? "   NOPE!

But take a really deep breath, Jared, and thank God for seeing an expert, for they know the disease and they make all the difference!!!  I wish more could see experts!!

Hugs to you!!!

Lisa