Vasculitus

[Wordsley]

Vasculitus of the liver very rare disease I've been told has anyone else got it.

[Hidden]

What are your symptoms? I have autoimmune hepatitis (and GPA/Wegeners) and the liver symptoms include raise liver enzyme values, fatigue, difficulties digesting and itchy skin. It comes and goes.

[Hidden]

Hi Wordsley,

What variant of Vasculitis do you have ( there are over 18 ). It would be unusual for Vasculitis to affect only the liver and not involve other organs.

[Wordsley in reply to Hidden]

It is only the liver the small veins in the liver. The blood doesn't flow properly which makes me very tired sick and the alt fluctuates from 200 to 800 which makes me feel dreadful. I am in constant discomfort as you can feel the blood trying to get through and its struggling also can't digest properly can't sleep apparently their is no one else in the country with the same problem their are people with similar symptoms but been told it's very rare.

[Hidden in reply to Wordsley]

What treatment are you on and do you see a Consultant with experience in Vasculitis as its very rare?

[Wordsley in reply to Hidden]

No treatment there isn't any for my condition only being monitored for bleeding blockages very depressed about it as I feel so uncomfortable and can't enjoy life anymore.

[Wordsley]

Alt is fluctuating stays around 400 but has been as high as 800. Fatigue digesting is awful. Pain and dragging feeling due to the blood trying to get through the small blood vessels.I feel really ill everyday due to the blood not circulating around and the levels being so high. Feel really nausea all the time. Causing problems with my heart and kidneys too.

[AndrewT]

Dear Wordsley,

Dr David Jane, is a Consultant, at Addenbrooke's Hospital, Cambridge. He is also an advisor to Vasculitis UK, our 'sister' organisation. He also happens to be the leading expert, o ALL 'things' Auto-immune. I had a Kidney transplant there, in July 2013, and I do know that they also perform Liver Transplants, though on different wards. So, to answer your question(s), you could do far worse than to get a referral to see him. I do understand that, if you live, many miles away, from Cambridge, this could present a problem.

Please do contact him/get a referral if at all possible. Would you please let us know how you get on? I know that we all send you our very best wishes-and, if it's not too early, a Merry Christmas.

AndrewT

[Wordsley in reply to AndrewT]

Thankyou I appreciate the info I will look into it but I'm in the midlands so see what they say it's really kind of you to tell me. Best wishes.

[AndrewT]

You are very welcome Wordsley, I hope it helps.

Happy New Year

AndrewT

[Ccartz]

Hi Wordsley,

I'm new to this site. I just wondered how you were doing? I was diagnosed with GPA with liver involvement. I'm being treated with pred & cyclophophamide. Still waiting for further biopsy results from the QE to confirm there is not underlying liver disease. I'm also based in the midlands, Halesowen. Where are you being looked after? I'm at Russell's Hall.

[Wordsley]

Yes I have a rare liver disease that can't be treated I'm under the queen eliz hosp being monitored very uncomfortable and very depressed feel very alone awful when there's no treatment very hard to accept.

[Ccartz in reply to Wordsley]

I'm so sorry to hear that, can't imagine how hard it is to deal with. I hope the QE are providing some emotional support for you. Im expecting my results any time soon, I'm so anxious. Sending hope and support. X

[Wordsley]

I hope you get some decent results it's awful what we all have to go through. I have been waiting over twelve months for emotional support that's what's so hard not having the back up take care.