Leukocytoclastic Vasculitis

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Hello everyone. In September I broke out in hives, really bad ones for the first time ever. Long story short, after going to the doctor, then the allergist, then the dermatologist. I got a skin biopsy and it confirmed Leukocytoclastic Vasculitis. I am being referred to Hematology. The doctor talked about all these scary underlying diseases that can cause this such as leukemia, colon canceretc. 

my first break out with hives was sever and chronic lasting for 8 weeks. 

I noticed earlier that I started breaking out in hives again after they had been gone for a month. I am terrified, new to this. No information other than what I have read on the internet. The internet hasn’t done me any favors. Can anyone who has Leukocytoclastic vasculitis pleas give me any in site on their experience. I have read so much about organ damage other scary things that can happen. I am sure it will still be awhile before I get to a doctor to get the ins and outs. 

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  • Posted

    Samantha sorry I can't add much here except to say I have Behcet's disease which is a form of vasculitis. When you look online the scariest stuff comes up and, while I have felt ill and awful at times, there have been no major problems with internal organs and none of the scariest aspects of the disease have been a problem for me.

    Feel very positive about the fact that your disorder has been diagnosed hopefully early in the process. Frotline medicine in the UK and US is so good and there are currently so many treatment options that you should try not to worry about all the extreme cases you read about online. It would be worth joini ng a help group on Facebook where you can talk to others who have vasculitis who would share experiences and information with you. There are several groups and people are generally friendly, supportive and well informed. Best of luck.

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  • Posted

    Hi Samantha,

    So sorry to hear about what you are going through. I battled with Urticarial Vasculitis and CLL all last year. It was a hell of a year with itching, rashing and trying to find what works. That’s good you were diagnosed. I can tell you this; try to stay positive, keep a diary about what you eat, write down your symptoms and be careful of what you find on the internet because some of it will scare you to death. There are many treatment options available for you, so it’s not as hopeless as it used to be. Work with your doctors by keeping them informed (that’s where your diary will help). This is a good forum for support and ideas another is PatientsLikeMe. You hang in there Samantha. Wishing the best for you!

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  • Posted

    Hello Samantha,

    My mom was diagnosed with mpa vasculitis may2017. She had sever kidney damage and lungs. Never really had any skin rashes with it so far. I will tell you she has come along way since then. Lungs are good and kidneys are slowly improving. I believe as long as your seeing a rheumatologist he or she should be able to manage it. I don't wanna bore you with my mom's treatment plan because I'm sure it will be different from yours beings that you have a different form of vasculitis. However I do believe you should be on prednisone if your not maybe ask your doctor

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  • Posted

    Samantha, I am sorry that you are going through this. I don't have a lot to add as far as advise. I just wanted to let you know that you are not alone. I recently had a biopsy come back showing leukocytocolasic vasculitis. I too had "hives". My hives would come out mostly on my hands and they would hurt not itch and each hive would last for a few days. I am currently on steroids and colcrys. This has worked at keeping the hives away. I am currently being tested to check to see if my organs have been affected. Everything that I read seems to not be what I'm not dealing with. Hope you find some answers. Sorry I am not much help.

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