@Galixie i have severe dermatographia and took xyzal as well. I took monteleukast and Zantac as well, all 3 together . I agree , it barely helps and the itching and hives are hell.
I got the same raised X from the scratch test but the hives spread allover , face to feet. The allergist told me then that antihistamines would not help me and she ordered xolair and it was approved and infusion set up within a week.
I was overwhelmed and didn't know the dermatographia was part of MCAS so I decided to wait it out . Wrong choice . Got much worse , very quickly, so you may want to see an allergist who knows about mast cell disorders and get the 24 hr urine done .
Recently, the neuro reiterated my brain symptoms are from MCAS but I don't know , i don't think so. But I understand what you did with the half pill because that's me all the time but I'm not amused by it because it's scary and awful now and I feel I have brain damage . I make very bizarre decisions and am stumped by how to close the fridge . It took me 5 hours to realize I could empty the contents of the fridge drawers and leave the drawers out , then close the fridge . That's pretty low mental function after being very high functioning . It's horrifying .
So it is possible the dermatographia is part of a more involved mast cell disorder . Do you get imprinted by your clothing ? I mean every stitch and detail , anything you touch , and it itches ?
In my experience, the dermatographia just went strong and endless , until this moment . The brain stuff got worse and worse . But I don't know if it's the MCAS
The other thing is , some people can't dampen the MCAS . Nothing has helped me with it at all. Quercetin and vit c and xanax , all useless . Cromolyn , I think made me worse . Antihistamines had a minor effect then became useless
It's possible your hives are unrelated to MCAS . Can you eat ? Use products?
It's best to get the 24 hr urine and then rule it out . If your hives are better , that's a very good sign . I personally wouldn't keep taking antihistamines if you don't need to . Or try Allegra . They simply don't do anything when you have bad dermatographia but you can have them there just as bsck up
It's all very strange, I think we were exposed to a lot of radiation or mold to set this off . It's not some life long thing like some dr's like to say . If you can get away from what is making you sick , maybe it will go away so maybe less is more right now . You will know if you worsen and then can try stronger things if necessary .
The most important thing is the 24 hr urine and thorough blood work . MCAS is being diagnosed a lot by a small number of dr's and specialists are then on edge and sort of upset about it and might not be willing to look further . Your allergist might not want to run all these tests in the abscence of other very bothersome symptoms .
I got the same raised X from the scratch test but the hives spread allover , face to feet. The allergist told me then that antihistamines would not help me and she ordered xolair and it was approved and infusion set up within a week.
I was overwhelmed and didn't know the dermatographia was part of MCAS so I decided to wait it out . Wrong choice . Got much worse , very quickly, so you may want to see an allergist who knows about mast cell disorders and get the 24 hr urine done .
Recently, the neuro reiterated my brain symptoms are from MCAS but I don't know , i don't think so. But I understand what you did with the half pill because that's me all the time but I'm not amused by it because it's scary and awful now and I feel I have brain damage . I make very bizarre decisions and am stumped by how to close the fridge . It took me 5 hours to realize I could empty the contents of the fridge drawers and leave the drawers out , then close the fridge . That's pretty low mental function after being very high functioning . It's horrifying .
So it is possible the dermatographia is part of a more involved mast cell disorder . Do you get imprinted by your clothing ? I mean every stitch and detail , anything you touch , and it itches ?
In my experience, the dermatographia just went strong and endless , until this moment . The brain stuff got worse and worse . But I don't know if it's the MCAS
The other thing is , some people can't dampen the MCAS . Nothing has helped me with it at all. Quercetin and vit c and xanax , all useless . Cromolyn , I think made me worse . Antihistamines had a minor effect then became useless
It's possible your hives are unrelated to MCAS . Can you eat ? Use products?
It's best to get the 24 hr urine and then rule it out . If your hives are better , that's a very good sign . I personally wouldn't keep taking antihistamines if you don't need to . Or try Allegra . They simply don't do anything when you have bad dermatographia but you can have them there just as bsck up
It's all very strange, I think we were exposed to a lot of radiation or mold to set this off . It's not some life long thing like some dr's like to say . If you can get away from what is making you sick , maybe it will go away so maybe less is more right now . You will know if you worsen and then can try stronger things if necessary .
The most important thing is the 24 hr urine and thorough blood work . MCAS is being diagnosed a lot by a small number of dr's and specialists are then on edge and sort of upset about it and might not be willing to look further . Your allergist might not want to run all these tests in the abscence of other very bothersome symptoms .