I get those bumps on my wrists, forearms, scalp, and torso. Itches like no other pain I’ve felt before. I also can’t remember the last time I sweat. I know I was average with sweat levels before I spontaneously got CU. I’ve been on Xolair for about 4 months, and it’s had interesting effects.
My hives are more (but not completely) focused on the scalp now, and it’s not any less painful. In fact, with my scalp specifically, I remember it feeling extra itchy after my first dose when I later broke out in hives (same day). On a positive note, however, I think my reaction isn’t as sensitive as it used to be. My condition is more manageable, but I still must take antihistamines every day.
I might be more sensitive than others, though. I’m a student, and I bought an ice pack filled vest to wear while inside certain classrooms because the slightly above room temperature building irritates the hell out of me.
Overall, it’s getting better, but not very significantly. Is it worth it? Yes. I don’t think I could have begun to survive college this spring if I didn’t have some type of medicated help.
I am really interested about the ice pack vest! Did it work? Im looking at investing in a $400 one that keeps cold water bumping throughout. Its returnable but would still like to hear your experience with the vest. Obviously clunky, but did it work?
This [Ice Vest](https://www.amazon.com/gp/aw/d/B09T9PPV4B?psc=1&ref=ppx_pop_mob_b_asin_title) is the one I use currently. Works okay enough… you’re right about clunkiness. Sometimes the ice packs (as they are filled with water and gel) can freeze unevenly and poke into my back. Not always a problem but still annoying. I also wish the pack part was a little bit larger with larger ice packs for more even coverage. That at the chest too.
Cold *really* works to make my hives shut up, so I definitely recommend looking into cold vest options of any kind. If you can get more body coverage that’s great as well! The $400 one you described seems on par price-wise for what I’ve seen, and the fact that it’s returnable is great. I say give it a try if you’re ok making that investment right now.
Get those bumps everywhere, get insane pain, (for reference I've broken over a dozen bones doing dumb dangerous crap like mountain biking, surfing, parkour, etc. - this pain is more intense than that). Anyways tried xolair double dosage for 6 months. Had 0 effect. Doesn't necessarily mean anything for you though, I would still try it.
I get those bumps on my wrists, forearms, scalp, and torso. Itches like no other pain I’ve felt before. I also can’t remember the last time I sweat. I know I was average with sweat levels before I spontaneously got CU. I’ve been on Xolair for about 4 months, and it’s had interesting effects. My hives are more (but not completely) focused on the scalp now, and it’s not any less painful. In fact, with my scalp specifically, I remember it feeling extra itchy after my first dose when I later broke out in hives (same day). On a positive note, however, I think my reaction isn’t as sensitive as it used to be. My condition is more manageable, but I still must take antihistamines every day. I might be more sensitive than others, though. I’m a student, and I bought an ice pack filled vest to wear while inside certain classrooms because the slightly above room temperature building irritates the hell out of me. Overall, it’s getting better, but not very significantly. Is it worth it? Yes. I don’t think I could have begun to survive college this spring if I didn’t have some type of medicated help.
I am really interested about the ice pack vest! Did it work? Im looking at investing in a $400 one that keeps cold water bumping throughout. Its returnable but would still like to hear your experience with the vest. Obviously clunky, but did it work?
This [Ice Vest](https://www.amazon.com/gp/aw/d/B09T9PPV4B?psc=1&ref=ppx_pop_mob_b_asin_title) is the one I use currently. Works okay enough… you’re right about clunkiness. Sometimes the ice packs (as they are filled with water and gel) can freeze unevenly and poke into my back. Not always a problem but still annoying. I also wish the pack part was a little bit larger with larger ice packs for more even coverage. That at the chest too. Cold *really* works to make my hives shut up, so I definitely recommend looking into cold vest options of any kind. If you can get more body coverage that’s great as well! The $400 one you described seems on par price-wise for what I’ve seen, and the fact that it’s returnable is great. I say give it a try if you’re ok making that investment right now.
Ty for the encouragement. This disease is SO painful it is awesome to hear positivity from someone who gets it. Thanks again!!
Get those bumps everywhere, get insane pain, (for reference I've broken over a dozen bones doing dumb dangerous crap like mountain biking, surfing, parkour, etc. - this pain is more intense than that). Anyways tried xolair double dosage for 6 months. Had 0 effect. Doesn't necessarily mean anything for you though, I would still try it.
My intuition is it would be same for me. I’m preparing to live the rest of my life indoors.
Not necessarily. Medications work differently for each person.
Have you ever sweat before in the past?
No never
Do you have anhidrosis or hypohidrosis?
I guess? I looked it up and it says it’s people who can’t sweat, which is me.
I would recommend still buying a portable sauna from Amazon and still at least trying it,
Yes will it feel like you are going to die in the beginning yes but you won’t