Search
Search
About
Log in
Join
Experiences with
Cerebral vasculitis
Posts
Communities
802 public posts
Filter results
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
Lupus choking and feeling like throat goes into a spasm
Once I'm in the heat on the choking/coughing I get tingling over my head which I know is the
cerebral
vasculitis
because my old consultant told me and my hubby this but he's now left and this new consultant looks at me like I've gone mad. I'm really struggling to cope. Any advice please.
Once I'm in the heat on the choking/coughing I get tingling over my head which I know is the
cerebral
vasculitis
because my old consultant told me and my hubby this but he's now left and this new consultant looks at me like I've gone mad. I'm really struggling to cope. Any advice please.
Lorska1
in
LUPUS 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
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
Rash
Anyone have any thoughts on this rash? It's on my arm, but also on my side and my thigh, although a bit less severe. The itch is driving me mad and antihistamines are doing nothing. My skin biopsy suggested possibly Urticarial Vasculitis. I'm awaiting a dermatology review on the 25th and have heard nothing
Anyone have any thoughts on this rash? It's on my arm, but also on my side and my thigh, although a bit less severe. The itch is driving me mad and antihistamines are doing nothing. My skin biopsy suggested possibly Urticarial Vasculitis. I'm awaiting a dermatology review on the 25th and have heard nothing
kazmac45
in
LUPUS UK
7 years ago
Urticarial Vasculitis
Hello. I'm new to this part of the forum, having only been in the Lupus UK part until now. I've had lots of tests for Lupus and despite my CRP and ESR being sky-high with my first symptoms (joint pain, vasculitis rash etc) 2 years ago, my ANA was negative. This time my ANA is positive (even after further
Hello. I'm new to this part of the forum, having only been in the Lupus UK part until now. I've had lots of tests for Lupus and despite my CRP and ESR being sky-high with my first symptoms (joint pain, vasculitis rash etc) 2 years ago, my ANA was negative. This time my ANA is positive (even after further
kazmac45
in
Vasculitis UK
7 years ago
Skin & blood results
So ..... my bloods came back with my Coombes test normal but I have NO Vitamin D!! It was so low it was 'unrecordable'. These go back to the (horrible) rheumatologist and I have no idea what he'll say, given that he dismissed me but asked for these bloods to be done. My GP has given me medication today
So ..... my bloods came back with my Coombes test normal but I have NO Vitamin D!! It was so low it was 'unrecordable'. These go back to the (horrible) rheumatologist and I have no idea what he'll say, given that he dismissed me but asked for these bloods to be done. My GP has given me medication today
kazmac45
in
LUPUS 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
Moving to Durham
that deal with
Vasculitis
PANCA and
Cerebral
? and have heard about Prof John Isaacs, has anyone experience of being treated in this area and any suggestions?
that deal with
Vasculitis
PANCA and
Cerebral
? and have heard about Prof John Isaacs, has anyone experience of being treated in this area and any suggestions?
anthony01
in
Vasculitis UK
7 years ago
Falling down with CV and fibro
I am a 57 year old woman with a long history of
Cerebral
Vasculitis
( primary). I also have fibromyalgia. This morning when I got up, I quickly fell back down onto the bed. No pain. No blackout.
I am a 57 year old woman with a long history of
Cerebral
Vasculitis
( primary). I also have fibromyalgia. This morning when I got up, I quickly fell back down onto the bed. No pain. No blackout.
Kat13
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.
Hello, I have been diagnosed with
cerebral
vasculitis
and I have a massive amount of symptoms, just too many to mention.
Hidden
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
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
1
...
15
16
17
...
41
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
669 results
LUPUS UK
89 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest