Leukoclastic Vasculitis

[Fortis]

I live in Perth Australia and 2 years ago was diagnosed with Leukoclastic Vasculitis I feel alone and isolated without much support and information. Fortis.

[Debba]

Hi, I live in central QLD and was recently diagnosed. Here to chat if you wish. What symptoms are you having?

[Fortis in reply to Debba]

Hi I get rashes on both lower legs mainly. At times on my arms ,buttocks, thighs and stomach. Then at times welts on my legs and body. Usually takes a few days for them to settle down. I've identified alcohol which seems to excasebate the problem. Not sure what else to avoide.

Thank you

Fortis.

[Debba in reply to Fortis]

I find keeping a diary of what you gave eaten and your symptoms on a daily basis helps. Are you on any medication? Do you see a specialist? I am still very new and learning, there is a Facebook page for LCV which I find helpful.

[Fortis in reply to Debba]

Yes that's a good idea. I do have a specialist two actually. A dermatologist and a haematologist. I'm in the early stages of Myeloid Leukaemia also not sure if they are associated both are immune deficiency issues. Thank you for your reply.

Fortis.

[Debba in reply to Fortis]

I get the rash mainly on my arms, back, stomach and face. I am currently on prednisone and dapsone. Have had reactions to both Plaquenil and Imuran. I am under an immunologist. Have been trying to reduce the pred but flared at 5mg so put up to 50mg. My white cell count is high and always has been at 25000 but esr and Crp have never been high. It's do frustrating not knowing what each day will bring

[Fortis in reply to Debba]

Can I ask what sort of reaction you have had to the pred? As that had been suggested to me from my Dr. He is cautious as I have had bowel cancer.

Fortis.

[Debba in reply to Fortis]

In the beginning I had nausea which has eased a little but have had the puffy face, eyelids, and neck all along. I don't think it controls anything except the rash. I have been trying to get off it for a month now but when I get down to 5mg I flare up again. I still get the aches and pains that I was having prior to the pred. I see my specialist on Tuesday so hopefully medication will be reviewed

[Fortis in reply to Debba]

Thank you for that. I was told it makes you gain weight also?

[Debba in reply to Fortis]

I haven't gained a lot of weight, a couple of kilos but definitely redistributed my weight to my stomach area. It hasn't increased my appetite. Think everyone's body reacts differently

[Fortis in reply to Debba]

Thank you so much for your information it's been very useful.

Regards

Fortis

[Debba in reply to Fortis]

Anytime

[Cathomp]

For support you could join some of the Facebook pages, i have a couple of online friends in who live in Australia from thoughs sites. I know one had struggled to get help initially too.

[Fortis]

Thank you will do.

Regards

Fortis

[Fortis]

Can I ask has your condition got worse over the 9 years.

Regards

Fortis.

[amms43 in reply to Fortis]

I had similar leukocytoclastic vasculitis undiagnosed for 9 years by which time I had a lot of joint pain (which moved from place to place), the rash, mainly lower legs but upper legs and forearms less severely, arrhythmia, bleeding in the whites of my eyes (usually the first thing to appear if I was starting a flare). I think the worst part has been feeling really unwell and the utter exhaustion of fatigue. I go to a specialist clinic where my heart, joint pain, rashes and fatigue are pretty well controlled with a cocktail of drugs. I have not been able to get rid of the prednisolone and find the appetite and weight gain difficult to control. Three years ago I had a 12 month course of Cyclophosphamide. It works for some but not at all for me so now I am on my second year of Rituximab which has been really great and changed my life.

Have you found the Vasculitis Route Map from Vasculitis UK? It is very helpful and will give you a much better understanding of what ails you. Some people prefer not to know but I have found it much more helpful to be informed.

Good luck.

[Fortis in reply to amms43]

Thank you for all that there is a lot of useful information there. Good luck with your condition.

Regards

Fortis.

[AndrewT]

Dear Fortis

I can't offer you much specific advice, regarding Perth, but I can suggest that you look up the information on 'Vasculitis UK'. You can contact John, the Chairman, at '[e-mail]' I'm sure that he will be able to help.

Please do stay 'in touch'

Best wishes AndrewT

[Fortis]

Thank you so much for your reply.

Regards

Fortis