Hi gang,

I just spoke to Dr. Castells by phone as i've been having some bad lip / tongue / mouth swelling and she told me I could use Benadryl up to 200 mg / day if it helped and that there was no issue with that.

I know I read on this board lots of folks mentioning rebound issues and the fact that it can cause further degradation of mast cells, etc.  but she said this wasn't the case. I'm so confused...where did folks who have been told to be wary of too much Benadryl hear it was something to be careful of? I'd love any feedback......

Thx so much!

Well that is interesting news!  If it's really true, then that's awesome!!!  Personally, I was having a really hard time when I was using a lot of Benadryl... but if what Dr. Castells says is true (and I have no reason to doubt her), then I was just in a flare and not making myself worse with too much Benadryl.

Mmmm... the sweet, sweet taste of liquid relief

Heather

I was actually going to pose that question here, I've not come across any information like that in regards to benadryl and I have to take it daily, no way around it. I only take it in the evening, but every evening  and then as needed daily for those "trouble days" or of course I'm fully going down emergency. I was frustratedly just staying quiet on the subject but annoyed because I hadn't come across any info like that! I so far do not tolerate much and I truly am only alive because of it. I take 50 mg a pop and yes it makes me tired! If I have to function I follow it up with a caffeine chaser of my tolerance So her OK when you are a mess is 200 mg in a 24 hr period, not at once! So that's 2 every 6 hours, I've done that a few times after a major attack. I would not operate machinery and def stay home! :
So, as Mike so wonderfully said, I'm not an expert on mastocytosis, but I'm an expert on Sandi with well,,,, I'm not officially diagnosed but I could go stay at a Holiday Inn Express and then maybe diagnose myself. Oh and someone was talking about the 50mg IV drip, kicked me on my keester, I couldn't stand either, Ive mentioned this before but on an older masto conference transcript I read many masto patients have talked about a weird "reaction" to IV benadryl, shivering uncontrollably and total exhaustion/vertigo/almost to immediate pass out but overall it helped with the mast cell emergency. The docs were dumbfounded, and a lot of people in the crowd confirmed it happened to them too.  So did I have a point? Oh yeah, so I was trying like heck to not use benadryl and replace with some of the other tolerated drugs and so far none that I can tolerate along with the allegra, finally I thought to myself Sandi, you know this is helping you, it works for you, take it, and poof ya it works for me. Again I'm not the "old me" but I'm making it. Ok back to your mouth, is it mostly raw foods that are doing this to you? You may be able to cook the foods and tolerate it then, That works for a couple of things for me, petite frozen peas, trader joes, so far I tolerate no other variety that I can find. So possibly you just need to heat something in them that is ticking your mouth off! And again 50 mg of Benadryl orally hits the body way different than 50 mg IV! ooooohh , geeze sorry I'm babbling.... had a lot of iced tea today......  are you using a chapstick/ lipstick type of thing that is "newish" I went full on angelina Jolie lips with different lip salves. They blew up so big once they split open and were oozing nasty stuff all over, it was horribly painful, and took months to heal. My eyes and lips are also very hypersensitive to products, full on severe allergic conjunctivitis from makeups. Hair products will give me allergic conjunctivitis, lame lame lame! How'd I move to eyes from mouth..... ? Too much caffine, go to bed Sandi
Oh another issue, when I have had to massively antihistimine myself with allegra and benadryl sometimes I will be very "twitchy" restless leg/ arms etc. It's awful! I take and thank God tolerate 2 MPA caps by complementary prescriptions and it helps with the irregular heartbeat and the twitchy/ restlessness, it takes about 1 hr to calm it all down.

Hi all ,

This information is very useful to me and a huge relief . It has been a daily med and a mainstay of my emergency plan but I have been holding back on it as I didn't want to make myself iller . i met a lady in clinic here who routinely took 60mg daily .

As for the drowsy H1s and sleepyness

I only get sleepy with ceterizine or piriton if I am not reacting . even 12mg orally piriton / 20mg ceterizine . Otherwise it seems to be too busy working . I can have the IV dose and still not sleep .

Hugs
Josie