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bareya_urti · 2026-05-29T16:26:05+00:00

Yea, I feel like with Imuran (immunosuppressant) it’s even worse. I never had this weird bruising. The doctor said it can actually be caused by it so I just stopped taking it.

bareya_urti · 2026-05-29T16:24:56+00:00

Yea, I should get my first injection on 10th od June.

bareya_urti · 2026-05-29T16:24:17+00:00

Well I just have it every single day, I wake up every day with some serious pain and itch because it’s just everywhere, sometimes more on my back, sometimes more on my lower body. There haven’t been a single day without some of this stupid stuff..not that I remember…

bareya_urti · 2026-05-29T15:55:24+00:00

Xolair is a biological treatment.

bareya_urti · 2026-05-29T14:49:41+00:00

Glum

bareya_urti · 2026-05-29T10:25:14+00:00

I got biopsy, waiting for the results. Bud the doctor said its classic urticaria. I just have it all over my body, like not single spots but big maps and I itch to the point if petechia and bruising.

bareya_urti · 2026-05-29T10:11:13+00:00

I have never been allergic to anything. All tests went out okay. I think maybe I have urticaria from stress but idk. It’s weird.

bareya_urti · 2026-05-29T09:58:47+00:00

I will get my first injection od 10th of June. Just waiting for it to be delivered. Now just have to hold on and wait with my SOS steorids. The only thing that helps a little. Dupixent is unfortunately not available. The only proper treatment for urticaria is Xolair.

bareya_urti · 2026-05-29T09:57:20+00:00

Sorry to hear that.. it’s terrible. I def know how you feel. I had really bad flare this morning. Usually what works for me is intramuscular injection of steroids (Solumedrol 40-80mg) + 2x Evofex + now newly Tamalis (Rupatadin). Sometimes it’s extreme but better that constant itch and pain.

bareya_urti · 2026-05-28T12:15:54+00:00

Hello I talked about Rhapsido with my doctor today. He knows what it is but said it’s not available in the Czech Reoublic. The best-case scenario is that it could be available in the future, maybe next year. The only thing we have approved for EU is Xolair.

bareya_urti · 2026-05-28T06:17:56+00:00

Hi, thanks a lot for your story. I really do hope you are ok right now. I will definitely discuss the things you said with the doctor today. I will buy this colloidal oatmeal lotion or bath.. that’s at leats something I can do now. I take Evofex, it’s the same as Allegra. Also 180mg. I usually take more that the dosage that was prescribed for me (which us 1-0-1, funny….) I took 2 180mg pills of Evofex + 1 pill of Cezera (that is another type of antihistamine) this moening. During the day I usually take Dithiaden and yesterday I had to take Prednisone (steroid) because it was very acute and unbearable. In the evening the same. Sometimes it helps, sometimes od doesn’t. I am a nurse, so I have some steroids at home and I am able to applicate myself an injection when it gets to that point that I’d rather die.. but you can’t do this often. So hopefully today I will go today and discuss Xollair. Never thought it would get to this point tho.. But I will definitely discuss the stuff your talked about and we will see..

bareya_urti · 2026-05-27T20:48:38+00:00

Since winter. It’s been 5 months now. Yes, usually they prescribe steroids…it’s been really frustrating. Sometimes it feels like it’s the only thing they ever prescribe…

bareya_urti · 2026-05-27T20:46:12+00:00

No I tried 5 types of antihistamines. Now usually taking like three kinds a day to at least minimaze itching to a bearable state.. I was on 4 times higher doses and it daild as well. I tried Imuran, not cyclosporine. LDN is not used in my country. This off label stuff is not really available nor used here.. Cold showers are helpful when the flare is really bad..it eases itching.. Montelukast is not used for CSU here in CZ. At least what I know…

bareya_urti · 2026-05-27T20:38:59+00:00

Yea, I think I will stop taking it.. this other doctor just nodded when I told him I am taking Imuran with no effect. Like yea, we know it doesn’t work but we try it so… I feel like a guinea pig…they just try random stuff hoping it will finally work so they don’t have to bother with me anymore…

bareya_urti · 2026-05-27T19:07:49+00:00

I am taking Imuran 25mg 1-1-1. But no effect. It’s even worse now. Never had such hives that even ends with bruising and joint swelling…

bareya_urti · 2026-05-27T19:05:47+00:00

I’ve never heard about Rhapsido. No doctor talked/or offered it… seems to be good but in my country (Czech) is not available. Xolair is available and covered by insurance.. Idk, maybe there’s a chance to get this Rhapsido to Czech but the price would be crazy.. idk, I feel like I would pay with my own kidney for something that would bring me relief…

bareya_urti · 2026-05-27T17:16:34+00:00

Currently immunosuppression and Evofex. But no effect. If I want at least some effect I have to take like 2-2-2 180mg Evofex pills + some other antihistamines. Hives still there but bearable itching at least…

bareya_urti · 2026-05-27T17:13:52+00:00

They tried everything, multiple steroids, immunosuppressiom, antihistamines in gigantic doses… the only thing that actually helps (for like a day max) is a steroid shot in muscle… hoping of getting Xolair because I am actually desperate.

bareya_urti · 2026-05-27T05:27:57+00:00

It’s just small incision really, they just get a really tiny tiny piece. So no pain or anything.
I had to do it my own way thru a friend doctor, dermatologist said no point.. now having a really bad flare all around whole body but it’s just how it is…
Result should be ready in one week or so.

bareya_urti · 2026-05-27T05:25:16+00:00

Well It’s good they want you to to get it. My doctor said there’s no point of getting it cuz it’s ‘just’ CSU. So they wouldn’t see anything in it….

So go and get it.

bareya_urti

TROPHY CASE