Can somebody help: Hi everyone I am new and... - Vasculitis UK

Vasculitis UK

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Can somebody help

narz profile image
narz
10 Replies

Hi everyone I am new and also very worried about my life I have being going to the doctor after which they said I have leukocytoclastic vasculitis, which she put me on 5mg predisone. I jus want to learn more about this can someone help me.

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narz profile image
narz
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10 Replies
JontyW profile image
JontyW

Hello,

Here is a useful link which describes this type of vasculitis.......

patient.co.uk/doctor/hypers...

Hope this helps you to understand better.

narz profile image
narz in reply toJontyW

Thank you am only affectrd with itching and some times mi joint pain

Nadine99 profile image
Nadine99

Also go to the vasculitis website where there's a wealth of useful information. I don't know how to put the link on here but it's Vasculitis UK

GT_321 profile image
GT_321

Try this link for more informationvasculitis.org.uk/

Winter64 profile image
Winter64

Hi I have LV, this is what they usually find from the biopsy, for me it was the confirmation vasculitis marker for diagnosis of urticarial vasculitis. Is this what you have? I have had this since 2003ish and got diagnosis 2007. I currently take 100mg Dapsone, 360mg fexofenadine, 1500mg tranexamic acid ( because I have angioedema) and 10mg hydroxyzine. If you can't sleep or have pain you could ask for doxepin for that. There is a Facebook group for leukocytoclastic vasculitis, mainly US people on it, but has useful information and the vasculitis UK website and Facebook page. If you have any questions, I will try and answer them for you xxxx

narz profile image
narz in reply toWinter64

I would jus want to ask if this take a period of time for the medication to start work

Lupylass profile image
Lupylass

Hi I have this as part of urticarial/hypersensitivity vasculitis, SLE and sjogren's. I take hydroxychloriquine and methotrexate and my symptoms are well controlled. In fact I'm really well at the moment and lead a full and active life.

It did take a while to feel better and for my doctors to get the right medications to suit me, plus a few more medical diagnosis (coeliac and pernicious anaemia) along the way, but hopefully I'm stable for a while now.

My advice would be to listen to your body, communicate well with your medical team and don't ignore symptoms unless they are worth ignoring to get on with your life. Your health is in your hands. Be positive and proactive.

lillylangtree profile image
lillylangtree

Please take heart, worry won't make you better, I was diagnosed with Churg-strauss vasculitis in 2007, May and I was on mega doses of drugs, prednisone100 mg in hospital and 80 mg after almost 2 month stay. Also, other drugs, including methotrexate.

I couldnt even walk.

I went to a Naturopathic Doctor and I was able to successfully wean off the prednisone and quit the other drugs. I had to make a complete change in my life by eating healthy, living whole foods, exercise, lots of water, no sugar or even sweets whatsoever. I decided to take the healthy way and restore my broken immune system, rather than destroy or suppress it.

Whatever you do, hang in there, you can get better. First of all, don;t worry. There are also wonderful groups on facebook where you can find kind and loving support from some very amazing folks who have been just where you are. Just take it one day at a time. I did and I now walk, drive, work, and live. It took time and persistence, but it all paid off. Also prayer and meditation help and writing every day. Blessings to you!!!

narz profile image
narz in reply tolillylangtree

Thank u so much for your words of comfort

AndrewT profile image
AndrewT

Dear narz,

I can't really add anything, to what has been said above, except maybe...Welcome to our group! Important to say, easy to forget-rather like 'would you like a cup of tea?'

You will find that we don't bite-except on the first Tuesday, after the equinox- if the month begins with J (or is it D)...No wait it's M, or is it.....!

Anyway welcome indeed narz.

AndrewT

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