Spryte Posted April 3 Share Posted April 3 (edited) Especially if you are living with it. I want to know everything you are willing to share. Any experiences would be appreciated. What are your symptoms, if you have it? How do you manage it? And if you’ve had anaphylaxis as a result — how do you manage to eat without constantly looking over your shoulder? Edited April 3 by Spryte Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted April 3 Share Posted April 3 I don't, but my kids all have this, as well as my DIL. They have all used Cromolyn, and have used or tried Xolair shots. All of these have helped to various extents. I'm not sure who's taking what at the moment; they are all well into adulthood. It also didn't present until after adolescence, along with EDS and dysautonomia, and the diagnoses and treatments all came as they were pretty much already launched, so I know some things, but never had to help manage it day to day. My DIL actually seems to have the worst of it. I went with her to the appointment for her to try her first Xolair shot - which she promptly had an anaphylactic reaction to. Fun times, to be allergic to the thing that's supposed to tamp down your overactive allergic responses... 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 4 Author Share Posted April 4 (edited) Wow, so many in your family! Was Xolair helpful for them? Obviously not for DIL, yikes. I’m glad she was in the doc office when that happened! How scary. Edited April 4 by Spryte Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted April 4 Share Posted April 4 9 hours ago, Spryte said: Wow, so many in your family! Was Xolair helpful for them? Obviously not for DIL, yikes. I’m glad she was in the doc office when that happened! How scary. Yes, the Xolair shots were helpful, which is why DIL wanted to give them a go. The reaction isn't unheard of - as you know, folks with MCAS can react to just about anything, and sometimes one day and not another. They have everyone wait in the office for two hours after the shots for just this reason. Two epi shots needed, yikes. DIL has also experienced idiopathic anaphylaxis - which is anaphylaxis for no apparent reason, so there's that. The drs haven't ruled out trying the Xolair again, not sure how DIL feels. Ond of my other dds is currently trying to get approved for Xolair. Dr wants a cromolyn trial first. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 4 Author Share Posted April 4 5 minutes ago, Matryoshka said: Yes, the Xolair shots were helpful, which is why DIL wanted to give them a go. The reaction isn't unheard of - as you know, folks with MCAS can react to just about anything, and sometimes one day and not another. They have everyone wait in the office for two hours after the shots for just this reason. Two epi shots needed, yikes. DIL has also experienced idiopathic anaphylaxis - which is anaphylaxis for no apparent reason, so there's that. The drs haven't ruled out trying the Xolair again, not sure how DIL feels. Ond of my other dds is currently trying to get approved for Xolair. Dr wants a cromolyn trial first. I’m so sorry she had that happen after the Xolair. How does she manage the idiopathic anaphylaxis? I have just learned about idiopathic anaphylaxis, unfortunately. I had it twice in one week about ten days ago. Horrible. They did start me on Xolair, with samples pending approval, but I am constantly wondering if it will happen again. I worry about what to eat, and supplements and meds. It really gets in your head. 1 Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted April 4 Share Posted April 4 (edited) 2 hours ago, Spryte said: I’m so sorry she had that happen after the Xolair. How does she manage the idiopathic anaphylaxis? I have just learned about idiopathic anaphylaxis, unfortunately. I had it twice in one week about ten days ago. Horrible. They did start me on Xolair, with samples pending approval, but I am constantly wondering if it will happen again. I worry about what to eat, and supplements and meds. It really gets in your head. Poor girl took an Uber to the ER. My dd (her wife) was in the hospital recovering from spinal surgery for EDS-related tethered cord (all my kids and DIL have had this surgery as well, which has helped them all very much, but just then dd had aspirated into her lungs after the surgery and had to be on oxygen), but anyway DIL was alone in their apartment and an hour away from us, and decided an Uber was cheaper than an ambulance... I have wondered if stress can bring on anaphylaxis? I think it had happened at least once before that, but I don't think it's happened again since, or at least they haven't told me about it. She keeps epipens on her. Edited April 4 by Matryoshka 4 Quote Link to comment Share on other sites More sharing options...
Irish Posted April 4 Share Posted April 4 Jill Carnahan, MD has a lot of info and resources @ www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/ 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 4 Share Posted April 4 On 4/3/2024 at 1:02 PM, Spryte said: What are your symptoms, if you have it? How do you manage it? And if you’ve had anaphylaxis as a result — how do you manage to eat without constantly looking over your shoulder? Anaphylaxis—my doctor did blood tests to see what I was allergic too. I have pseudo anaphylaxis, but not true anaphylaxis (not sure that’s even a real term!). I don’t have idiopathic anaphylaxis, so once I had a good explanation for how true anaphylaxis is not really possible, I am more at ease. I do avoid handling fresh herbs because the cutting, touching, etc. causes some inexplicable reaction that is horrible. But I can eat the herbs if I wasn’t the one touching them and breathing them in. Ditto for essential oils—can’t be around a diffuser. My MCAS symptoms are itching (with patterns of what is most likely to itch), skin redness that shows up in the mirror but not looking at me directly (sounds bonkers but is true!), hot ears that often itch, itching in my ears and throat, general congestion, parasthesia—feels like a bug is actively biting me in specific places, and sometimes GI stuff, though GI is usually slow burn. I will also get a spike in migraines. Oh, and likely gas. I say likely because since infancy I have been gassy, but 90% of it went away after going gluten free (before I was diagnosed with MCAS). I would bloat up to the point of looking very pregnant every single day, and it was agony. I gave birth twice without drugs, and it hurt less because contractions give you a break, and gas pains don’t come and go. I was a miserable baby. It’s true that the reactions can vary a lot, and something can be fine sometimes and not others. It can also be processing vs. ingredients. It’s nuts! I can eat olives but not olive oil, for instance. Once MCAS is under control, I can eat most things again, but I have to spread out potentially problematic foods. That said, I don’t eat gluten at all. I end up with GI issues. I also pretty much avoid all really green greens (I can eat lettuces). I can tolerate small amounts in soup, and very small spinach salads. I like raw spinach though, and I can’t really eat just a little, so I avoid it. I get major GI issues with leafy greens. Tea is also a big problem. You can react to more than just histamines. I think I react mainly to gluten and oxilates, but once things get going, I can read to anything and everything. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 4 Share Posted April 4 Oh, sometimes heartburn. It comes and goes. I read recently that it’s thought MCAS is quite common but that there are mild presentations. I come from a long line of people on one side of the family that know what they can and can’t eat and when with ever-changing quirks; I think I just have a more robust presentation. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 4 Share Posted April 4 Oh, I think it used to also mess with my BP and heart rate, but the picture on this is not clear—too much family history of weird cardiac stuff. Hormone imbalance definitely exacerbates my MCAS too. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 23 Author Share Posted April 23 I’ve made it another month without anaphylaxis! Second round of Xolair is today. I have been really struggling with staying awake, and in the afternoons I absolutely *must* nap — a long one, sometimes followed by an after dinner nap. It’s ridiculous. I was convinced it was something to discuss with my regular doc, and we went over some things, but ultimately — she thinks it’s the massive doses of antihistamines. I’m on a big dose of morning and evening Zyrtec. Anyone with experience have this happen? Any suggestions for a different option? 2 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted April 23 Share Posted April 23 4 minutes ago, Spryte said: I’ve made it another month without anaphylaxis! Second round of Xolair is today. I have been really struggling with staying awake, and in the afternoons I absolutely *must* nap — a long one, sometimes followed by an after dinner nap. It’s ridiculous. I was convinced it was something to discuss with my regular doc, and we went over some things, but ultimately — she thinks it’s the massive doses of antihistamines. I’m on a big dose of morning and evening Zyrtec. Anyone with experience have this happen? Any suggestions for a different option? Overall high inflammation levels can make you super sleepy too. It was hard for me to sort that out—actually went off zyrtec when I went onto an immunosuppressant and the fatigue remained. But, everyone’s body is different. You could ask to switch to loratadine and see if that helps. 1 Quote Link to comment Share on other sites More sharing options...
KSera Posted April 23 Share Posted April 23 20 minutes ago, Spryte said: I’ve made it another month without anaphylaxis! Second round of Xolair is today. I have been really struggling with staying awake, and in the afternoons I absolutely *must* nap — a long one, sometimes followed by an after dinner nap. It’s ridiculous. I was convinced it was something to discuss with my regular doc, and we went over some things, but ultimately — she thinks it’s the massive doses of antihistamines. I’m on a big dose of morning and evening Zyrtec. Anyone with experience have this happen? Any suggestions for a different option? Can you be active and do your usual level of activity and still feel the same in the next day or two, or is your activity level highly affected? My answer would depend on that. Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 23 Author Share Posted April 23 12 minutes ago, KSera said: Can you be active and do your usual level of activity and still feel the same in the next day or two, or is your activity level highly affected? My answer would depend on that. I can’t manage even close to my pre-event normal level of activity. And exercising is just out of the question, other than a slow walk. 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 23 Author Share Posted April 23 27 minutes ago, prairiewindmomma said: Overall high inflammation levels can make you super sleepy too. It was hard for me to sort that out—actually went off zyrtec when I went onto an immunosuppressant and the fatigue remained. But, everyone’s body is different. You could ask to switch to loratadine and see if that helps. Thanks. I will discuss with the allergy NP today when I see her for the shot. Yes to high inflammation. And my regular doc (an LLMD, functional med doc) suspects viruses have popped back up. Also sending off some tests. Quote Link to comment Share on other sites More sharing options...
KSera Posted April 23 Share Posted April 23 Just now, Spryte said: Yes to high inflammation. And my regular doc (an LLMD, functional med doc) suspects viruses have popped back up. Also sending off some tests. That's good. What you're saying, including the MCAS, sounds post viral to me, and of course it makes my brain go to post covid, but I know you have some other viral history. Whatever the case, I wish it didn't sound post viral to me :(. I hope it all resolves to your previous baseline soon. The lack of further anaphylaxis is a good sign at least. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 23 Author Share Posted April 23 7 minutes ago, KSera said: That's good. What you're saying, including the MCAS, sounds post viral to me, and of course it makes my brain go to post covid, but I know you have some other viral history. Whatever the case, I wish it didn't sound post viral to me :(. I hope it all resolves to your previous baseline soon. The lack of further anaphylaxis is a good sign at least. I wish we could test to see if we’ve had Covid. Other than the round in early 2020 when there was no testing, I’ve tested serially whenever sick and have always come up negative. But asymptomatic is an option. No one in our family has had it either, that we know of. But yes, I have a big, ugly viral history. Doc actually mentioned a Lyme test, too, though we settled on viruses being more likely. I feel pretty rough right now. 2 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 23 Share Posted April 23 I'm glad you've avoided anaphylaxis and sorry for the ongoing exhaustion. I find that Zyrtec makes me pretty sleepy. I am much more alert taking fexofenadine or loratidine. Keep doing all the things--vitamins, rest, medical testing. Warm hugs for you. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 23 Share Posted April 23 Come to think of it, fexofenadine comes in a 180mg dose--it may be just as strong or stronger than two Zyrtec per day. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 23 Share Posted April 23 6 hours ago, Spryte said: I’ve made it another month without anaphylaxis! Second round of Xolair is today. I have been really struggling with staying awake, and in the afternoons I absolutely *must* nap — a long one, sometimes followed by an after dinner nap. It’s ridiculous. I was convinced it was something to discuss with my regular doc, and we went over some things, but ultimately — she thinks it’s the massive doses of antihistamines. I’m on a big dose of morning and evening Zyrtec. Anyone with experience have this happen? Any suggestions for a different option? Most people I know with MCAS are on Allegra 180 (I can take up to four per day). Zyrtec does nothing but make me sleepy. Claritin is not potent enough. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 23 Author Share Posted April 23 33 minutes ago, kbutton said: Most people I know with MCAS are on Allegra 180 (I can take up to four per day). Zyrtec does nothing but make me sleepy. Claritin is not potent enough. Thank you! I feel completely out of it on this much Zyrtec. I will ask about trying Allegra instead. 1 Quote Link to comment Share on other sites More sharing options...
Lawyer&Mom Posted April 24 Share Posted April 24 I take an Allegra in the am and Zyrtec in the pm. Allegra is great, but won’t let me sleep. 1 Quote Link to comment Share on other sites More sharing options...
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