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Any advice?
Hi all. I’ve just joined here and recently been diagnosed with ANCA vasculitis. I’d never heard of it and had a series of tests. I’d love to hear any stories or advice from any of you.
Hi all. I’ve just joined here and recently been diagnosed with ANCA vasculitis. I’d never heard of it and had a series of tests. I’d love to hear any stories or advice from any of you.
Blueybear
in
Vasculitis UK
3 years ago
I was diagnosed with Wegeners Granulomatosis, now known as Granulomatosis with Polyangiitis, 20 years ago this month.
My wife Susan has written my vasculitis story for the VUK website for those who have an interest. https://www.vasculitis.org.uk/john-mills-story
My wife Susan has written my vasculitis story for the VUK website for those who have an interest. https://www.vasculitis.org.uk/john-mills-story
John_Mills
Vasculitis UK
in
Vasculitis UK
3 years ago
Shielding
Hi I was diagnosed with
cerebral
vasculitis
14 years ago. At that time I became quite poorly and had steroids infused every 12 weeks over 3 days. I do still take medication but have not had to have steroids for a while now. I have been told that I am stable now and I’m doing well.
Hi I was diagnosed with
cerebral
vasculitis
14 years ago. At that time I became quite poorly and had steroids infused every 12 weeks over 3 days. I do still take medication but have not had to have steroids for a while now. I have been told that I am stable now and I’m doing well.
blackgolf
in
Vasculitis UK
4 years ago
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Off meds but anxious 😟
Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on them I feel vulnerable and anxious about relapsing. (I was taken off them due to adverse side effects) At the time my consultant felt that as I was doing well without them there was no need to put me on
Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on them I feel vulnerable and anxious about relapsing. (I was taken off them due to adverse side effects) At the time my consultant felt that as I was doing well without them there was no need to put me on
Webbyj
in
Vasculitis UK
4 years ago
Need help please
Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia. I came out the other side a changed man but I’m struggling to come to terms with what is happening with my body at times!
Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia. I came out the other side a changed man but I’m struggling to come to terms with what is happening with my body at times!
Rarity1
in
Vasculitis UK
4 years ago
Rituximab and vaccine
This is not a question about whether to get the vaccine. I know it’s recommended and I can’t wait to do it. It’s about those of you who are immunosuppressed with Rituximab or something similar that have received a vaccine. Curious if any of you have had your antibodies tested afterward. I am so anxious
This is not a question about whether to get the vaccine. I know it’s recommended and I can’t wait to do it. It’s about those of you who are immunosuppressed with Rituximab or something similar that have received a vaccine. Curious if any of you have had your antibodies tested afterward. I am so anxious
TwoH
in
LUPUS UK
4 years ago
Am I finally being listened to?
I had yet another phone appointment today with Dermatology, strange really as they can't see what's actually happening so they're working blind. Anyway for a years now I've been asking for another skin biopsy as the one done 4 years ago was from a week's old rash, that old it's companion spot's disappeared
I had yet another phone appointment today with Dermatology, strange really as they can't see what's actually happening so they're working blind. Anyway for a years now I've been asking for another skin biopsy as the one done 4 years ago was from a week's old rash, that old it's companion spot's disappeared
Boudica1
in
LUPUS UK
4 years ago
Rituximab after Pfizer
Hi Everybody, hope you are all well! There has been a lot of good advice regarding the safety and time limit guidelines for having the Pfizer vaccine after Rituximab, as I mentioned earlier I had m6 last infusion on 20th November last year and my first Pfizer jab last week. What I haven’t heard much
Hi Everybody, hope you are all well! There has been a lot of good advice regarding the safety and time limit guidelines for having the Pfizer vaccine after Rituximab, as I mentioned earlier I had m6 last infusion on 20th November last year and my first Pfizer jab last week. What I haven’t heard much
Investigator1
in
Vasculitis UK
4 years ago
MHRA latest advice re vaccines
These may include systemic conditions such as
vasculitis
or thrombophilia,
cerebral
or systemic infections, trauma, malignancy, obesity, thyroid disease and inflammatory bowel disease.
These may include systemic conditions such as
vasculitis
or thrombophilia,
cerebral
or systemic infections, trauma, malignancy, obesity, thyroid disease and inflammatory bowel disease.
JaneChapple
in
Thyroid UK
3 years ago
Is Granulomatosis with polyangiitis (GPA) relapse after every 2 years??
I am suffering from Granulomatosis with polyangiitis (GPA) from past 7 years now. It is non curable disease yet controllable from medicines if treated on right time. Symptoms of this disease can vary patient to patient - in 2014 my symptoms was nose blockage, joint pain, blood from month & nose, and
I am suffering from Granulomatosis with polyangiitis (GPA) from past 7 years now. It is non curable disease yet controllable from medicines if treated on right time. Symptoms of this disease can vary patient to patient - in 2014 my symptoms was nose blockage, joint pain, blood from month & nose, and
Mohini25
in
Vasculitis UK
4 years ago
Vasculitis and COVID Vaccine
Hi everybody, we are now further down the road regarding vaccinations from my last post on the subject, however I am still having difficulty finding information regarding if those of us on immune suppressants can have a COVID jab. I say this because I have heard Doctors saying if you are offered the
Hi everybody, we are now further down the road regarding vaccinations from my last post on the subject, however I am still having difficulty finding information regarding if those of us on immune suppressants can have a COVID jab. I say this because I have heard Doctors saying if you are offered the
Investigator1
in
Vasculitis UK
4 years ago
I am new here having finally been diagnosed with Crohn’s Colitis having previously told it was Ulcerated Colitis
A belated Merry Christmas everyone. I have finally had it confirmed that I have Crohn’s Colitis but am struggling with a very bad flare up which, so far, has lasted nine weeks. My GP doubled my medication to 4800 mg of Octasa (Mesalazine) a day but, after two weeks, it doesn’t seem to have had any
A belated Merry Christmas everyone. I have finally had it confirmed that I have Crohn’s Colitis but am struggling with a very bad flare up which, so far, has lasted nine weeks. My GP doubled my medication to 4800 mg of Octasa (Mesalazine) a day but, after two weeks, it doesn’t seem to have had any
gmm55
in
LUPUS UK
4 years ago
Recently Diagnosed with CNS Vasculitis
Hello, Im new to this group and have recently been diagnosed in the last year with various forms of vasculitis, CNS and systemic, I am just learning to accept this and finding it very hard for the whole family if anyone has any advice that would be great especially for my little ones who are 8 & 10
Hello, Im new to this group and have recently been diagnosed in the last year with various forms of vasculitis, CNS and systemic, I am just learning to accept this and finding it very hard for the whole family if anyone has any advice that would be great especially for my little ones who are 8 & 10
NataliePhillips123
in
Vasculitis UK
4 years ago
Rituxuban
Have just had my first infusion 6days ago having been unable to tolerate Azathioprine or MMF. Am currently on Prednisolone 10mgs but am having abdo and back pain. Should I increase my prednisolone until the Ritixuban kicks in. I have PAN vasculitis. Thanks x
Have just had my first infusion 6days ago having been unable to tolerate Azathioprine or MMF. Am currently on Prednisolone 10mgs but am having abdo and back pain. Should I increase my prednisolone until the Ritixuban kicks in. I have PAN vasculitis. Thanks x
Daytek
in
Vasculitis UK
4 years ago
Autoimmune Neutropenia
Please may I ask if anyone has had experience of autoimmune neutropenia as I have developed this secondary to my Behcets. Basically I have developed an antibody which is destroying my own neutrophils. This is following a year of being unwell with several illnesses and being unable to take my immunosuppressants
Please may I ask if anyone has had experience of autoimmune neutropenia as I have developed this secondary to my Behcets. Basically I have developed an antibody which is destroying my own neutrophils. This is following a year of being unwell with several illnesses and being unable to take my immunosuppressants
NikD
in
Behçet's UK
4 years ago
Rituximab and pregnancy
Has anyone had rituximab and tried for a baby? I’m roughly 7 years diagnosed and had only 1 relapse in between. GPA vasculitis
Has anyone had rituximab and tried for a baby? I’m roughly 7 years diagnosed and had only 1 relapse in between. GPA vasculitis
rrahman
in
Vasculitis UK
4 years ago
Does Azathioprine ever fail?
I had got myself into a good position with my ANCA marker after Cyclophosphamide and Prednisolone and after monthly blood tests it’s started to creep up from 40 to 51 to 62. Not a massive increase and no returning symptoms. The last blood test results for ANCA was early August because I had to go local
I had got myself into a good position with my ANCA marker after Cyclophosphamide and Prednisolone and after monthly blood tests it’s started to creep up from 40 to 51 to 62. Not a massive increase and no returning symptoms. The last blood test results for ANCA was early August because I had to go local
Investigator1
in
Vasculitis UK
4 years ago
Medication after Rituximab
Hi My OH is due for his second infusion following a relapse of his GPA. He was diagnosed 3 years ago and went into remission quickly after chemo infusions x 6. My question is does he also have an oral immune suppressant following this infusion. He presently takes 100mgs AZA and is on 30 mgs prednisone
Hi My OH is due for his second infusion following a relapse of his GPA. He was diagnosed 3 years ago and went into remission quickly after chemo infusions x 6. My question is does he also have an oral immune suppressant following this infusion. He presently takes 100mgs AZA and is on 30 mgs prednisone
Main1234
in
Vasculitis UK
4 years ago
Ergonomic computer mice
I’ve got a very multiple sclerosis form of
cerebral
/CNS
vasculitis
in terms of day to day symptoms. Fell ill 1994 aged 22, diagnosed in late 1997. Fortunately progression slowed with ongoing immunosuppression treatment, but it’s never gone fully into remission, especially after a big flare in 2004.
I’ve got a very multiple sclerosis form of
cerebral
/CNS
vasculitis
in terms of day to day symptoms. Fell ill 1994 aged 22, diagnosed in late 1997. Fortunately progression slowed with ongoing immunosuppression treatment, but it’s never gone fully into remission, especially after a big flare in 2004.
vivdunstan
Volunteer
in
Vasculitis UK
4 years ago
Help needed! Possibility of surgery due to avascular necrosis!
Covid has made it difficult to receive adequate care because of social distancing. In June 2020, I received a steroid injection in my left hip. Honestly, I have not seen much improvement. I have increased my fitness by exercising 3 to 4 times a week and hoping it would improve my mobility. I was using
Covid has made it difficult to receive adequate care because of social distancing. In June 2020, I received a steroid injection in my left hip. Honestly, I have not seen much improvement. I have increased my fitness by exercising 3 to 4 times a week and hoping it would improve my mobility. I was using
SLE-Warrior
in
LUPUS UK
4 years ago
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