Search
Search
About
Log in
Join
Experiences with
Urticarial vasculitis
Posts
Communities
760 public posts
Filter results
Young children with Wegners / Vasculitis
Hi, I am looking to find anyone who has experience with young children affected by WGPA or vasculitis especially around airways, nose lungs etc. My daughter first became ill at two years old and was given a diagnosis of WG a year later after some very serious hospital admissions. She is currently six
Hi, I am looking to find anyone who has experience with young children affected by WGPA or vasculitis especially around airways, nose lungs etc. My daughter first became ill at two years old and was given a diagnosis of WG a year later after some very serious hospital admissions. She is currently six
Matnkay
in
Vasculitis UK
7 years ago
Mononuritus multiplix enquiries
Hi every one; Im new here . I was diagnosed with "immune-mediated neuropathy" and some doctors mononuritus multiplix . Until now they are not sure about the cause . Some of them advice to do the biobsy to exclude vasculitis. Im using many medications but i dont see any change in my numbness fingers
Hi every one; Im new here . I was diagnosed with "immune-mediated neuropathy" and some doctors mononuritus multiplix . Until now they are not sure about the cause . Some of them advice to do the biobsy to exclude vasculitis. Im using many medications but i dont see any change in my numbness fingers
Ghayah
in
Vasculitis UK
7 years ago
Study into ANCA associated Vasculitis and fatigue
Came across this whilst searching for something else. It's a PhD thesis on Vasculitis and fatigue. It's on my " to read " list. Vasculitis U.K. memebers took part in the original research. Hopefully it contains some good tips to help combat the fatigue that is a problem for so many of us. http://etheses.bham.ac.uk
Came across this whilst searching for something else. It's a PhD thesis on Vasculitis and fatigue. It's on my " to read " list. Vasculitis U.K. memebers took part in the original research. Hopefully it contains some good tips to help combat the fatigue that is a problem for so many of us. http://etheses.bham.ac.uk
Hidden
in
Vasculitis UK
7 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Skin & blood results
My skin biopsy has also come back showing
Urticarial
Vasculitis
- the dermatologist said that's what they were looking for in relation to the Lupus stuff. My GP said he wouldn't even attempt to interpret all the other clinical, technical jargon on my biopsy report.
My skin biopsy has also come back showing
Urticarial
Vasculitis
- the dermatologist said that's what they were looking for in relation to the Lupus stuff. My GP said he wouldn't even attempt to interpret all the other clinical, technical jargon on my biopsy report.
kazmac45
in
LUPUS UK
7 years ago
Azathioprine! Hints and tips!
Hi everyone! I'm about to be put on azathioprine after being diagnosed with lupus (7+ years). I have resisted so far but failed to keep my flares and symptoms under control. Does anyone have any advice or warnings about azathioprine. Many thanks! Keli x
Hi everyone! I'm about to be put on azathioprine after being diagnosed with lupus (7+ years). I have resisted so far but failed to keep my flares and symptoms under control. Does anyone have any advice or warnings about azathioprine. Many thanks! Keli x
Kelihunt41
in
LUPUS UK
7 years ago
Still waiting for vasculitis diagnosis - now liver issues
A month ago I posted that my husband has tested positive for p-anca as well as PR3 and MPO after a long struggle with pneumonia like symptoms. He has had ulcerative colitis for 25 years well controlled. We are waiting to see the Rheumatologist (still another week away) but now we are searching out
A month ago I posted that my husband has tested positive for p-anca as well as PR3 and MPO after a long struggle with pneumonia like symptoms. He has had ulcerative colitis for 25 years well controlled. We are waiting to see the Rheumatologist (still another week away) but now we are searching out
hines97
in
Vasculitis UK
7 years ago
Weak Positive C-ANCA (A) ?
Hello everyone, i hope you're all feeling well :) this is new to me so bare with me lol. I had loads of blood tests done at addenbrookes hospital recently because iv had extreme fatigue, dizziness, light-headedness, nausea etc plus being upright makes my symptoms 100 times worse and laying down makes
Hello everyone, i hope you're all feeling well :) this is new to me so bare with me lol. I had loads of blood tests done at addenbrookes hospital recently because iv had extreme fatigue, dizziness, light-headedness, nausea etc plus being upright makes my symptoms 100 times worse and laying down makes
leahcim
in
Vasculitis UK
7 years ago
ANCA-positive and MPO - OR???
I am new here and sorry for my English I am from Denmark. This month one year ago my husband get ill. He had it like af flu for perhaps almost two weeks and went to the doctor. She found out that his CRP was 165 and sent him to hospital. After five weeks they at last found out that he was ANCA-P positive
I am new here and sorry for my English I am from Denmark. This month one year ago my husband get ill. He had it like af flu for perhaps almost two weeks and went to the doctor. She found out that his CRP was 165 and sent him to hospital. After five weeks they at last found out that he was ANCA-P positive
Lima51
in
Vasculitis UK
7 years ago
Wegener's Granulomatosis with polyanginitis
Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lot of destruction to my sinus cavity, my nose and my eyes have scarred to the point that my tear ducts don't work. As of last year, all of the above issues were controlled by tubes in my eyes, nose reconstruction surgery X3
Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lot of destruction to my sinus cavity, my nose and my eyes have scarred to the point that my tear ducts don't work. As of last year, all of the above issues were controlled by tubes in my eyes, nose reconstruction surgery X3
Lillybweggie
in
Vasculitis UK
7 years ago
VASCULITIS MANAGEMENT
Hello, With reference to John Mills's article in the AGM magazine regarding how poor Wales NHS actually were in treating Vasculitis patients and signs of progress with the Welsh Assembly involvement on the issue. By default, the issues raised by John, may be common to other rare deceases and other NHS
Hello, With reference to John Mills's article in the AGM magazine regarding how poor Wales NHS actually were in treating Vasculitis patients and signs of progress with the Welsh Assembly involvement on the issue. By default, the issues raised by John, may be common to other rare deceases and other NHS
Yeprat
in
Vasculitis UK
7 years ago
Can't get a diagnosis
Hi everyone I've not been dx with vasculitis but everything is pointing to it apart from my crp and esr level. I was in A&E last Saturday and again on Thursday but they couldn't find anything wrong. I asked about vasculitis but they said it was unlikely because of my normal bloods. I'm in so much pain
Hi everyone I've not been dx with vasculitis but everything is pointing to it apart from my crp and esr level. I was in A&E last Saturday and again on Thursday but they couldn't find anything wrong. I asked about vasculitis but they said it was unlikely because of my normal bloods. I'm in so much pain
Johnbrooks1973
in
Vasculitis UK
7 years ago
Cerebral vasculitis.
Hello, I have been diagnosed with cerebral vasculitis and I have a massive amount of symptoms, just too many to mention. On my first attack of cerebral vasculitis it left me with a lot of damage to various areas of my brain and although I New I was very different I carried on with my life, which now
Hello, I have been diagnosed with cerebral vasculitis and I have a massive amount of symptoms, just too many to mention. On my first attack of cerebral vasculitis it left me with a lot of damage to various areas of my brain and although I New I was very different I carried on with my life, which now
Hidden
in
Vasculitis UK
7 years ago
steroid dependant
Good morning. I have been on steroids for approx. 14years straight. I have MPA and Anca Pos (now in remission). However I don't feel well and l cant put my finger on what it is! I have been told my body has become Steroid Dependant (Prednisolone) so now they are thinking of putting me on a different
Good morning. I have been on steroids for approx. 14years straight. I have MPA and Anca Pos (now in remission). However I don't feel well and l cant put my finger on what it is! I have been told my body has become Steroid Dependant (Prednisolone) so now they are thinking of putting me on a different
chubb
in
Vasculitis UK
7 years ago
Answers please!!!!
Can someone give me an idea of a typical cycle of prednisone and cytoxan for a person with wegeners? Like how long they should be taken and how many milligrams. I know it is different depending on the person and condition but are there some guidelines to follow? I would appreciate any help or feedback
Can someone give me an idea of a typical cycle of prednisone and cytoxan for a person with wegeners? Like how long they should be taken and how many milligrams. I know it is different depending on the person and condition but are there some guidelines to follow? I would appreciate any help or feedback
Deedrah
in
Vasculitis UK
7 years ago
Hi all UK vasculitis sufferers/ Rituximab
If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a fortnight apart last year, but am now on 1 infusion every 6 months and they are calling it 'maintenance' RTX therapy. I am with David Jayne at Addenbrooke's
If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a fortnight apart last year, but am now on 1 infusion every 6 months and they are calling it 'maintenance' RTX therapy. I am with David Jayne at Addenbrooke's
2534
in
Vasculitis UK
7 years ago
Vasculitis UK AGM May 2017 - Reflective View in Photos
The AGM was held on the 14th May in Derby and was well attended by 70 people. Dr Jackie Andrews from Leeds Teaching Hospitals NHS Trust gave a presentation discussing ERNs (European Reference Networks), Vasculitis Research at Leeds University Hospital and the AVACOPAN trial. Dr Jeremy Royle, Nottingham
The AGM was held on the 14th May in Derby and was well attended by 70 people. Dr Jackie Andrews from Leeds Teaching Hospitals NHS Trust gave a presentation discussing ERNs (European Reference Networks), Vasculitis Research at Leeds University Hospital and the AVACOPAN trial. Dr Jeremy Royle, Nottingham
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Leg lesion biopsy result
Evening/morning all Letter from dermatologist 8th June Received today Dear Laura, This is to confirm your biopsy showed very little, although there was possibly a late stage of vasculitis. There was certainly no way of making a diagnosis from this & if matters are not improved then it is important
Evening/morning all Letter from dermatologist 8th June Received today Dear Laura, This is to confirm your biopsy showed very little, although there was possibly a late stage of vasculitis. There was certainly no way of making a diagnosis from this & if matters are not improved then it is important
LauraMk30
in
Vasculitis UK
7 years ago
secondary cns vasculitis
I just started prednisone and am wondering how long before my tingling in arms in legs will subside.. Has anyone else had this?
I just started prednisone and am wondering how long before my tingling in arms in legs will subside.. Has anyone else had this?
judyann
in
Vasculitis UK
7 years ago
Anca vasculitis and diet
Hi everyone, my husband has anca vasculitis and I've been trying out Holistic approaches with him. Trying to use food as medicine Since it's well known that sugar and carbs are inflammatory foods, do you watch how much you consume? And if you do, does it seem to be helping? Do you have a certain
Hi everyone, my husband has anca vasculitis and I've been trying out Holistic approaches with him. Trying to use food as medicine Since it's well known that sugar and carbs are inflammatory foods, do you watch how much you consume? And if you do, does it seem to be helping? Do you have a certain
Christina1960
in
Vasculitis UK
7 years ago
Son with Vasculiti Anca Associata with renal involvement
Hi I write from north of Italy. In March of this year the doctor told us that my son, who is 11 years old and 1/2, has an aggressive form of Vasculiti Anca Associata with renal involvement. At first they saw a Rapidly progressive glomerulonephritis that now after due mounths of cyclophosphamide, Prednisone
Hi I write from north of Italy. In March of this year the doctor told us that my son, who is 11 years old and 1/2, has an aggressive form of Vasculiti Anca Associata with renal involvement. At first they saw a Rapidly progressive glomerulonephritis that now after due mounths of cyclophosphamide, Prednisone
Wizzi
in
Vasculitis UK
7 years ago
1
...
14
15
16
...
38
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
636 results
LUPUS UK
87 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest