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Cerebral vasculitis
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Has anyone been increased on Azathioprine? Did it help?
Hi all, i have been on Azathioprine 100mg for about a year now and I have been told that it doesn’t seem to be suppressing my neutrophil count. They have been hesitant to increase me as they said my weight 100mg is good for (i weigh 70kg due to high steroids but lets say im usually 60-65kg marker) but
Hi all, i have been on Azathioprine 100mg for about a year now and I have been told that it doesn’t seem to be suppressing my neutrophil count. They have been hesitant to increase me as they said my weight 100mg is good for (i weigh 70kg due to high steroids but lets say im usually 60-65kg marker) but
Sandy1212
in
LUPUS UK
4 years ago
Help develop a testing tool
EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis. They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis. https://www.vasculitis.org.uk/news/help-develop-a-testing-tool
EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis. They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis. https://www.vasculitis.org.uk/news/help-develop-a-testing-tool
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
Help with exercising with GPA.
Hi, I don’t normally post as feel a bit shy about asking for advice, but I am just interested in knowing anyone else’s experience. I have since my diagnosis, tried to do some exercise each day, however little. I thought, and I have seen on this site, that there are advocates for exercise as reducing
Hi, I don’t normally post as feel a bit shy about asking for advice, but I am just interested in knowing anyone else’s experience. I have since my diagnosis, tried to do some exercise each day, however little. I thought, and I have seen on this site, that there are advocates for exercise as reducing
Tbrz
in
Vasculitis UK
4 years ago
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ANCA PR3 Rising after finishing Cyclophosphamide and transferring to Azathioprine.
Hi Anybody out there, I have been doing really well reducing my ANCA PR3 Levels since diagnosis of GPO in December, they were off the scale but after 4 treatments of Cyclophosphamide it had a marker reading of 56, I then was transferred to Azathioprine and after 6 weeks of it my marker reduced to 40
Hi Anybody out there, I have been doing really well reducing my ANCA PR3 Levels since diagnosis of GPO in December, they were off the scale but after 4 treatments of Cyclophosphamide it had a marker reading of 56, I then was transferred to Azathioprine and after 6 weeks of it my marker reduced to 40
Investigator1
in
Vasculitis UK
4 years ago
Azathioprine
I am mid flare and feeling dreadful I failed on plaquinin due to a skin reaction 😓 so much treatment was stopped in early March . I was due to be seen to discuss my next options but that didn’t happen because of covid 19 . So Iv gone three months without any treatment and boy I’m feeling it . Rheumatologist
I am mid flare and feeling dreadful I failed on plaquinin due to a skin reaction 😓 so much treatment was stopped in early March . I was due to be seen to discuss my next options but that didn’t happen because of covid 19 . So Iv gone three months without any treatment and boy I’m feeling it . Rheumatologist
Harry19
in
LUPUS UK
4 years ago
Wegeners Granulamatosis - looking for tips
I am looking to find others with Wegeners Granulamatosis who are currently working as I am keen to understand what support is out there for someone desperately trying to hold down a full time highly stressful shift work job (in Services) whilst battling the fatigue and headaches that are common to this
I am looking to find others with Wegeners Granulamatosis who are currently working as I am keen to understand what support is out there for someone desperately trying to hold down a full time highly stressful shift work job (in Services) whilst battling the fatigue and headaches that are common to this
M25M
in
Vasculitis UK
4 years ago
High risk or not with cerebral vasculitis and the virus
Hi my husband had
cerebral
vasculitis
nearly 7 years ago. He has not been on any drugs for a few years now, but did start getting seizures about 2 years ago. He is on meds for high blood pressure and seizures. Would he be in the high risk category now?
Hi my husband had
cerebral
vasculitis
nearly 7 years ago. He has not been on any drugs for a few years now, but did start getting seizures about 2 years ago. He is on meds for high blood pressure and seizures. Would he be in the high risk category now?
Simmonds797
in
Vasculitis UK
5 years ago
Vasculitis lesions
I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but not has much has I have now . Does this mean lupus is effecting my kidneys ? Can anyone answer this , or have experience with this problem ,
I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but not has much has I have now . Does this mean lupus is effecting my kidneys ? Can anyone answer this , or have experience with this problem ,
Willow1414
in
LUPUS UK
4 years ago
It was the very first World Vasculitis Day, today, 15th May 2020
World Vasculitis Day Friday 15th May 2020 is the first ever WORLD VASCULITIS DAY. Today marks the first World Vasculitis Day, launched with a special edition of Rare Revolution magazine, dedicated to promoting the voice of the ANCA-associated vasculitis (AAV) global community. The article includes
World Vasculitis Day Friday 15th May 2020 is the first ever WORLD VASCULITIS DAY. Today marks the first World Vasculitis Day, launched with a special edition of Rare Revolution magazine, dedicated to promoting the voice of the ANCA-associated vasculitis (AAV) global community. The article includes
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
COVID19 Saved Angela’s Life - BBC News
COVID19 Saved My Life Angela was transferred to the Royal Brompton Hospital and was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) https://www.bbc.co.uk/news/uk-england-london-52527736
COVID19 Saved My Life Angela was transferred to the Royal Brompton Hospital and was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) https://www.bbc.co.uk/news/uk-england-london-52527736
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
Cyclophosphamide
Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immunologist and Neurologist put me on Cyclophosphamide for two years and without this I wouldn’t be here as well as I am today. It can be tablet or via infusion. I had both as didn’t live in the same city as my medical team
Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immunologist and Neurologist put me on Cyclophosphamide for two years and without this I wouldn’t be here as well as I am today. It can be tablet or via infusion. I had both as didn’t live in the same city as my medical team
Vrainbird
in
Vasculitis UK
4 years ago
Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
azaelea
in
MPN Voice
4 years ago
Immune system
I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on any vasculitis meds now and was wondering if my immune system is still compromised. In other words does vasculitis permanently damage your immune
I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on any vasculitis meds now and was wondering if my immune system is still compromised. In other words does vasculitis permanently damage your immune
Retire3603
in
Vasculitis UK
4 years ago
Your help is needed
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
John_Mills
Vasculitis UK
in
Vasculitis UK
4 years ago
Continue PIP FORM
Anyway I rang PIP information and spoke to someone about my difficulty in writing and having no one to do this for me as I’m in isolation. The extended 3 month period does not help me either as my Cyclophosphamide treatment will last longer than that. They do not have online forms to download ( my sister
Anyway I rang PIP information and spoke to someone about my difficulty in writing and having no one to do this for me as I’m in isolation. The extended 3 month period does not help me either as my Cyclophosphamide treatment will last longer than that. They do not have online forms to download ( my sister
Reggie1411
in
Vasculitis UK
4 years ago
Corona virus
Morning all I am trying to clarify if I should have recieved a letter or text. I have Vasculitis GPA I am on methotrexate I have high blood pressure. On Vasculitis site it says for having GPA I should be high risk and looked on NHS site its not clear that I am. I also suffer with my nerves and
Morning all I am trying to clarify if I should have recieved a letter or text. I have Vasculitis GPA I am on methotrexate I have high blood pressure. On Vasculitis site it says for having GPA I should be high risk and looked on NHS site its not clear that I am. I also suffer with my nerves and
buster1502
in
Vasculitis UK
5 years ago
Cyclophosphamide infusion but self isolating
Hey guys, So I have a few appointment this week at kings college hospital but I’ve been self isolating to obviously keep the risk of infection low for me and my mum. I’ve got my weekly renal appointment for bloods on Thursday(I’ve missed them the past 2 weeks because I’ve been scared to go out) and
Hey guys, So I have a few appointment this week at kings college hospital but I’ve been self isolating to obviously keep the risk of infection low for me and my mum. I’ve got my weekly renal appointment for bloods on Thursday(I’ve missed them the past 2 weeks because I’ve been scared to go out) and
GraceXNichole
in
LUPUS UK
5 years ago
Vasculitis and immunosuppressants
I have GPA, diagnosed 7 years ago and currently kept under control with azathioprine. I am now on a very low dose and my consultant has occasionally considered taking me off it altogether. I intend to ask him whether I should stop taking the medication for the time being until the Corvid-19 virus eases
I have GPA, diagnosed 7 years ago and currently kept under control with azathioprine. I am now on a very low dose and my consultant has occasionally considered taking me off it altogether. I intend to ask him whether I should stop taking the medication for the time being until the Corvid-19 virus eases
MAC12
in
Vasculitis UK
5 years ago
Vasculitis chest probs
Hi had my first infusion of rituximab days ago, not expecting miricles but was wondering why I still have a husky voice and feel as though when I get like that (which is quite often) there's a need to clear flem from my throat, can anyone explain this please, lve done a peek test and am reaching 450,
Hi had my first infusion of rituximab days ago, not expecting miricles but was wondering why I still have a husky voice and feel as though when I get like that (which is quite often) there's a need to clear flem from my throat, can anyone explain this please, lve done a peek test and am reaching 450,
Cookyboy1
in
Vasculitis UK
5 years ago
Thank You
Hi All I just want to say thank you for the information and support you gave to my mum when she posted on here about my daughter (her user name is Forgot2mention). When my 15 year old daughter first got diagnosed with Lupus in December it was a worrying time for us all and we knew very little about the
Hi All I just want to say thank you for the information and support you gave to my mum when she posted on here about my daughter (her user name is Forgot2mention). When my 15 year old daughter first got diagnosed with Lupus in December it was a worrying time for us all and we knew very little about the
chezevo
in
LUPUS UK
5 years ago
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