outlaw79
11-08-2006, 10:39 PM
I m looking for anyone that knows anything about this,somebody out there,there isnt much information online,and I feel kinda of alone..
Thanks
Outlaw
Thanks
Outlaw
Sponsor
dutchess99
11-11-2006, 08:19 PM
My neuro thinks I may have vasculitis. She said that it is the inflammation of the blood vessels and it affects the nerves and muscles depending on the severity. I go Tuesday for a repeat of the EMG and nerve conduction tests. I have severe neuropathy in my feet and I am high dose prednisone and cellcept. This combination has made me feel better but the neuropathy is still pretty bad.
outlaw79
11-12-2006, 04:55 AM
i have a rash on my lower legs,with pain in them..
What is the reason your vasculitis came on there is always a secondary reason infection/systemic??
Keep me informed glad to know im not alone here..
What is the reason your vasculitis came on there is always a secondary reason infection/systemic??
Keep me informed glad to know im not alone here..
dutchess99
11-13-2006, 09:21 PM
I was told it was mostly systemic and is a result of another disease. They know mine is autoimmune but do not know which autoimmune disease it stems from. The medicine combo that is working so far (I feel better than I did) is the treatment for lupus vasculitis.
outlaw79
11-14-2006, 02:57 AM
do you have a palapable purpura??Also havent you had a ana test esr etc??
what are your main symptoms?
what are your main symptoms?
dutchess99
11-16-2006, 09:06 PM
I don't have a rash. I do have the spider web pattern in my legs something reticulitis. I went to the neuro again last week and she said my tests came back negative so now she doesn't think i have vasculitis. I thought we were on to something but now....I do have a positive ANA 1:1280 and my anticardiolipin came back positive
outlaw79
11-18-2006, 02:50 PM
The biopsy came back negative?
What does that ana number reflect anything how is your esr,and crp??
What does that ana number reflect anything how is your esr,and crp??
Penguin
11-28-2006, 07:08 PM
Hi,
I have urticarial vasculitis. I had some compllications with it called cranial poly nueritis I am being seen by a rheumetologist and immunologist. I have had chronic urticaria for 11 years.
I am on the drug plaquenil which will stop further damage. At the moment my urticaria is bad, it just burns and keeps me awake at night.
There is some information on urticarial vasculitis but I have never come across anyone else with it. My skin is so weird, like tissue paper some days. I used to get a lot of swelling (angioedema) in the joints but this has improved since I have been on plaquenil.
Anyway, nice to meet you. Good to connect with someone else with this strange affliction.
Penguin
I have urticarial vasculitis. I had some compllications with it called cranial poly nueritis I am being seen by a rheumetologist and immunologist. I have had chronic urticaria for 11 years.
I am on the drug plaquenil which will stop further damage. At the moment my urticaria is bad, it just burns and keeps me awake at night.
There is some information on urticarial vasculitis but I have never come across anyone else with it. My skin is so weird, like tissue paper some days. I used to get a lot of swelling (angioedema) in the joints but this has improved since I have been on plaquenil.
Anyway, nice to meet you. Good to connect with someone else with this strange affliction.
Penguin
autumn2767
12-02-2006, 12:48 AM
Outlaw79,
Hi, I was diagnosed with vasculitis back in 1993. I had a rash on both my lower legs, terrible joint pains in my ankles and knees and i lost about 20lbs in about 2 weeks!! (that was the only good part!!!LOL). My vasculitis also affected my kidneys. There are some people that can have palpable purpura on their legs and it will resolve on its own in a couple of weeks, but when it starts to affect other organs then it is systemic. Have you had any bloodwork yet? I developed some open sores on my ankles from the vasculitis which my doctor biopsied which showed leukocytoclastic vasculitis. The reason i got vasculitis was because it was secondary to rheumatoid arthritis. If you have any questions feel free to ask me.
Autumn2767
Hi, I was diagnosed with vasculitis back in 1993. I had a rash on both my lower legs, terrible joint pains in my ankles and knees and i lost about 20lbs in about 2 weeks!! (that was the only good part!!!LOL). My vasculitis also affected my kidneys. There are some people that can have palpable purpura on their legs and it will resolve on its own in a couple of weeks, but when it starts to affect other organs then it is systemic. Have you had any bloodwork yet? I developed some open sores on my ankles from the vasculitis which my doctor biopsied which showed leukocytoclastic vasculitis. The reason i got vasculitis was because it was secondary to rheumatoid arthritis. If you have any questions feel free to ask me.
Autumn2767
undifferent
12-11-2006, 04:26 PM
Hi all..
I have been sick for about 3 months now.. the first few doctors diagnosed me with RMSF and Erlichiosis and I had a biopsy done on my rash and it came back as early Leukocytoclastic Vasculitis. Turns out its not infectious, rather an auto immune disease and the Vasculitis is probably secondary b/c my ANCA test came back clear. My ANA came back with a low positive, lupus negative, SSB + but SSA -, ESR somewhat elevated.. was in high 50's, went back down to low 40's, back up to 87 and then back down to 57... So here I am three months later, rash still active but much less than before (probably due to Prednisone) and about to start Plaqenil (spelling?) and have decreased my steroid dosage (swelling of joints returning while decreasing dosage). For now, I am diagnosed with undifferentied connective tissue dissease. Anyone familiar with UCTD?
I have been sick for about 3 months now.. the first few doctors diagnosed me with RMSF and Erlichiosis and I had a biopsy done on my rash and it came back as early Leukocytoclastic Vasculitis. Turns out its not infectious, rather an auto immune disease and the Vasculitis is probably secondary b/c my ANCA test came back clear. My ANA came back with a low positive, lupus negative, SSB + but SSA -, ESR somewhat elevated.. was in high 50's, went back down to low 40's, back up to 87 and then back down to 57... So here I am three months later, rash still active but much less than before (probably due to Prednisone) and about to start Plaqenil (spelling?) and have decreased my steroid dosage (swelling of joints returning while decreasing dosage). For now, I am diagnosed with undifferentied connective tissue dissease. Anyone familiar with UCTD?