Jennifer J
Senior Member
- Messages
- 997
- Location
- Southern California
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I have no idea of his availability (and his name escapes me at the moment) but I know there is an MCAS specialist at Scripps in San Diego in case he might be an option for you? Mine is in LA but if I had not been able to become his patient, the doc at Scripps was my next plan. There are very few of them in our state or in the world.
For me, the Atarax is enough and I've never needed the EpiPen. Last summer I was in the hospital on IV Benadryl and had never even heard of Atarax. When I developed a toxicity to Benadryl (after about two weeks of IV, then shots, plus pills) I thought I was out of luck. It took two months to get appt with my MCAS doc last summer after hospital and he immediately suggested Atarax as the rescue med and also added Ketotefin (and recommended a specific compounding pharmacy) and the two have been a miracle. I often wonder if I would still be alive today without those two meds. But I know everyone is different and some do great with Benadryl, just not me.
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It literally works in about 15 minutes. But if someone was in stage four anaphylaxis where they could no longer talk or swallow then it is too late and would require Epi. But when I am in stage 1-2 anaphylaxis or even less than this but having a bad reaction, I take one 25 mg Atarax and it turns it around 100% of the time. This is not a large dose but I have always done well with small doses of meds. My doc said you can build up a tolerance so I cannot take it as a daily maintenance med (like I do with Zyrtec, Ketotefin, etc) and save it for rescue situations which for me are usually 3-4x a month. The pills expire b/c they are compounded with no preservatives so I usually end up with about 6-7 pills that I have to discard from each bottle after they expire but it is worth it IMO to not risk it and be safe.
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My sense is that tolerating the burning, swelling, angiodema, third spacing, throat narrowing, and everything that comes along with it is not good for us and it's better to avoid the triggers when you can.
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Thank you so much and I am pressing forward as I know you are, too. I am on the edge of getting some real treatments and just need to make sure I have a place to live while I am doing them. Luckily the next hoop I have to jump through with insurance for IVIG will take a few more weeks so am hoping our bldg can find us a new unit in the mean time. The timing is horrible with relatives coming in 1-2 wks for my daughter's graduation and we are in chaos as usual once again.
I wish there was some form of housing for people with wheelchairs and MCAS where you could just live in peace with clean air (no mold, no VOC's, etc) but this is just a dream. Please let me know if I missed anything that you asked .
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@Gingergrrl, forgive me for not thanking you for this much, much sooner. I wanted to thank you and respond to more of what you wrote. Thought I'd be able to do so earlier than this. You are always so gracious, kind and helpful. Thank you! I really appreciate it. (And deep appreciation to all you kind, helpful, knowledgeable, and generous people. )
I'm not sure if I've answered you, I'm laughing cause I'm having such a hard time putting sentences together, this ought to say I'm not sure if can ______________ (can't think of the word/s )! (Even if it takes me hours to put this together I need to.)
I'm also not sure if I if it would be best to start a new thread for this with a different title that others may view that wouldn't view this one (let me know). And please bare with me, this may meander a tiny bit to give you some of my angioedema background, I was hoping maybe you and anyone would be able to answer my questions and have any insights to share.
I don't know if I have MCAS. I have had 24/7 angioedema since January 27, 2001. It has never stopped. I've been on Allegra 60 mg twice a day and an H2 blocker 150 mg twice a day for the past 15 years to help with it. Thankfully it's mild most of the time. (There's more I can say, but I'm foggy and I think I'll muddle things by doing so at this time.)
If you are up to it, can you share some of your knowledge with me? I have supplements and medications piling up that I need to try. Seems like I react to almost everything with an angioedema reaction that my 24/7 medications won't keep under control. The burning of my mouth is hard to experience (and can be scary) and the feeling of my back tongue swelling. I have other varying symptoms, too.
I was on Cortef for years, to help with the pain/burning (and more) from reactions because it wouldn't go away or stop sometimes for months. Not sure now about having done that (another story). Now I wait the burning out if I can, I use to take Benadryl but cause of the drowsiness it causes and how long it lasts with other side effects, I don't take it anymore. Now I take over the counter Chlorpheniramine Maleate.
I've been wondering about some things that you have mentioned about your rescue meds. (Please anyone reading this, none of this is medical advice, it's some knowledge being shared.) I've been given the impression that you don't mess around with angioedema reactions cause it can quickly become life threatening. Sometimes it seems some doctors don't think it's a big deal since it's mild yet I have all these things they know nothing about or have seen before going on. (Also, cause so many things set me off I think they question my mental being not my physical.) It gets confusing for me how to interpret what's what and what I should do about it. I have it all the time which is under control with 24/7 meds, and then other things (including scents) bump it up another level, still for the most part mild as far as swelling, pain/burning is not mild at all.
I've been concerned about anaphylaxis from what little I've learned about allergies, angioedema and all my reactions to things. I've tried talking to an allergist about this (another long story)... The ones that I've seen they never have had a patient that has had angioedema go on for 15 years straight without stopping. Except the very first one I saw 15 years ago, he said it would probably last 9 months to 2 years, could last 20 years and just go away. The other allergists seem to have never heard of that. (I was convinced I'd make mine stop within 3 months (ha), 9 months or more I'll be d*%!)
You have written about your rescue meds and stages of anaphylaxis. Can you explain this to me? I never knew that if you were having anaphylaxis that there were stages and you could wait it out with other meds and not use an EpiPen. I thought once it started you needed to take Epi action , that things could change quickly if not. I still don't even know about my angioedema, when I had fish lips, what kind of action that requires? I want to figure out how best to proceed, protect myself and respond as I go about trying new medications and supplements and food.
I feel for you @Gingergrrl , @justy and everyone else dealing with MCAS. When I can I'll have to read more thoroughly some of the posts you all have shared to see what I can learn. Thank you for all you're sharing. I find some times I feel vulnerable sharing things, it makes me even more appreciative of everyone that shares here. Thank you!
I haven't been able to read many posts lately. Ginger, I hope your daughter's graduation went well, you're all settled in your apartment and that's going well, and you have started the IVIG treatment and had a good response, too.
I'm thinking of you all with thankfulness, and hoping for better days for you.
(Please excuse any errors in writing, it did take me hours to write this. I can't proof read it again. )