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Ketotefin in Eye Drop form (for those with MCAS/allergies)

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 :hug:.

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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. :angel: Thank you! I really appreciate it. (And deep appreciation to all you kind, helpful, knowledgeable, and generous people. :hug:)

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 :aghhh:)! (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 :sleep: 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 :ninja:, 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. :eek: I can't proof read it again. :()
 

Gingergrrl

Senior Member
Messages
16,171
@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. :angel: Thank you! I really appreciate it. (And deep appreciation to all you kind, helpful, knowledgeable, and generous people. :hug:)

Jen, I want to reply to this today while I am feeling better and no need to respond, just want to help if I can and thank you for the support and kind words, they mean a lot to me.

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.

My best guess (which of course needs to be verified by a doctor) is that if you have had angiodema since 2001 and an H1 and H2 blocker are stopping (or at least reducing it) is that you do have MCAS. I think you said you also react to many medications, anesthesias, and strong smells? I can't remember if you react to foods or dyes?

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.

Am happy to share anything I know or refer you to links, blogs, dietary info, etc. Do you have specific questions? I think the MCAS doctor at Scripps is probably your best bet (unless you have already seen him or he is full?) I have never seen him and my doc who covers LA and Orange Counties is phenomenal but busy beyond belief and closed to new patients. I do get the burning mouth (upper palate, gums, etc) but this is not one of my main symptoms. Do you prefer to discuss via PM or in this thread or elsewhere? Just let me know.

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 :sleep: 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 have been on Cortef for one year and my attempt to wean off was not successful b/c it triggered the food reactions where I could not eat again. At present, my MCAS and ability to eat food is the best it has ever been so am not messing around with the Cortef or any part of my protocol for now. I also do not tolerate Benadryl well which is why I take Atarax as my rescue med (and now as a pre-med for IVIG).

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.

You are correct that I do not mess around with angiodema or any anaphylaxis reactions and my doctor wants me to take Atarax for this early on. I have never needed to use an EpiPen and my goal is to keep it this way. I think you mentioned being on a very high dose of Atarax (in the past) and wonder if a lower dose might be more tolerable for you (again with doctor's approval of course). Many docs think that MCAS is psychological until you see a true MCAS specialist and then you are finally speaking the same language. It is absolutely a physical illness and your mind cannot create angiodema in your throat b/c you smelled something strong or ate a food which triggered mast cell degranulation. Don't let anyone tell you otherwise.

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*%!)

I had not heard of angiodema for 15 years straight but the ER doctor I saw last night had never heard of headaches from IVIG (and it is the single #1 side effect if he had been bothered to look.) So just b/c something is uncommon or unusual does not make it any less real or any less life threatening. I would keep fighting until you find a doctor who understand how to treat you. I know it is exhausting, and can be all consuming, but if your throat is closing up from angiodema this is hard-core. Do you have an EpiPen?

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 :ninja:, 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.

There are many charts which list the stages of anaphylaxis and most divide it into three or four stages. Beyond four is death. So if I am in stage two, I take the Atarax. I used to try to tell myself that I could "overcome" the reaction on my own but truly this is silly and dangerous. My MCAS doc said if I reach a point in the reaction that I can no longer speak or swallow, then I have to use the EpiPen. So far this has never occurred but I think in those worst reactions, if I had tried to "suck it up" and not use the Atarax, it could have progressed that far. I also have Benadryl in injectable form which I have not needed to use in over one year but this is another interim measure. (ETA: I cannot tolerate Bendaryl as a daily med, but if I needed to take it in an IV or injection to save my life, I would not hesitate.)

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 am at the point that I will share just about anything in the hopes that it will help someone else or that I will learn new info that is helpful to me. There are two Masto groups I belong to on FB and I can give you the info privately. I mostly read them and do not post a lot (maybe once every month?)

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. :)

Thank you and the graduation, move to new unit, etc, all went as well as possible and exceeded my expectations. The IVIG as you know caused a ten day massive headache which finally brought me to the ER last night but is better today. Thanks for always asking and checking on me!

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. :eek: I can't proof read it again. :()

You, too, and I did not notice any typos and even if there were some, I would not care! Your heart and kindness shine through and I could care less about typos!