ANOTHER long story I will try to shorten. So the allergist who requested I go off my meds ended up being an already canceled appt which I had confused with the one I DID have coming up. So, the appt that I was supposed to have was today but they called me first thing this morning to tell me that I was scheduled with the WRONG doctor!!! Can you believe this? So they offered to set up the correct appt with the doctor I do need to see who is (can you guess?) an allergist! Oh geez! Yesterday I saw the rheumatologist because, as Dr Afrin suggested, with my symptoms and issues it would be a good idea to rule out other auto immune disorders that may go hand in hand with a mast cell disorder. Well the Rheumatologist agreed to run some blood work but felt I needed to see an allergist/immunologist. They made the appointment for me. I got THAT call too this morning and they want me off my meds for testing!
Thankfully I obtained Dr. Castels email and JUST NOW sent her an email requesting a confirmation and explanation for me to share with the allergist why it is NOT a good idea to go off antihistamines.
I got SO frustrated this morning that I was building up a good cry. However, I pulled my big girl britches up and kept repeating to myself "It's my health and I am in control." It helped me in that I didn't cry. Not sure I'm 100% convinced   I'm in control but I'm trying to learn more so I can make better decisions.
Thanks to everyone here for all the advice and help!
Wish me luck!

  Thanks for posting that.  I'd wondered why he starts with Claritin, and I can see what he's thinking.  Some doctors are minimalists about meds, while some prefer to start with a stronger dose and then back off when possible, in order to get things quickly under control.  

   This is a good thing for patients to know.  Be sure to let your doctor know if you don't have an acceptable response to the doses or meds you're taking!  There's a lot of leeway in dosing antihistamines, so ask for what you need!

Hi ladies,

I wanted to find the answer Dr. Afrin gave to me about the reason he selects the Pepcid and Claritan over the other meds.  This is the way his email was worded, "I usually recommend famotidine and loratadine because pharmacologists have figured out it has fewer risks for unwanted interactions with other drugs".

I am not sure if he suggests this for all of his patients (or just patients like myself who happen to be on 11 other medications besides meds for mast cell).  

Any one else have any other thoughts about this?

I agree with hb36, if the Claritan and Pepcid don't work, he is very open to trying ANY other mast cell meds that could help.   

It is interesting what you said Joan....about Pepcid not being as "strong" as other H2 blockers.  ???Maybe that's why I am not getting better...I keep thinking it's because of not having an H1 blocker.  


Thanks girls....good discussion.  Welcome back Kim.  We missed you!

Hugs, Lynda

Hi Lynda,

Not having an H1 blocker could be one reason.  Are there any you haven't tried yet?  

Normal strength famotidine (10-20 mg.) might not be enough for some people.  I think most MC people would say that Zantac works better.  

I've personally gone back to 20 mg. famotidine, twice/day, to see if the Zantac was causing some other problems, and I feel better now doing that, although there were a few days of adjustment.  My goal is to heal my GI enough so I can just take H1s.  Is that possible?  Don't know yet!  I do know that I've gone through periods when it was better and some when it was worse, so there must be a way to keep it in the "better" category.  I'm re-evaluating my diet, too.  Have been thinking about doing some sensitivity testing, but insurance won't pay and it's expensive.

I wonder if what Dr. Castells meant was that skin testing alone won't cause masto reactions.  Still, I know if I go off H1s and H2s for more than a day, I'll start the downward spiral.  I can't imagine she would think it would be okay to put oneself at risk by going off meds.