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Urticarial vasculitis
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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
4 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
4 years ago
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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
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
4 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
4 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
4 years ago
Anyone know about CIPD
Change of diagnosis. I was diagnosed with mononeuritis multiplex, secondary to vasculitis in 2015. I was on long term steroids followed by two years on mmf. With some symptoms still remaining I have been referred to another hospital where they are discussing whether I have CIPD, but am a bit of an enigma
Change of diagnosis. I was diagnosed with mononeuritis multiplex, secondary to vasculitis in 2015. I was on long term steroids followed by two years on mmf. With some symptoms still remaining I have been referred to another hospital where they are discussing whether I have CIPD, but am a bit of an enigma
linjoyfrench
in
Vasculitis UK
4 years ago
Anca vasculitis
Hi, I have anca vasculitis which started with a rash on my legs and arms in 2018 and now it has progressed and now have it in my lungs, on a high dosage of prednisone, 2 weeks of 60mg and now reduced to 40mg, until the doctors start me on other meds, Have been offered to do a trial if I qualify using
Hi, I have anca vasculitis which started with a rash on my legs and arms in 2018 and now it has progressed and now have it in my lungs, on a high dosage of prednisone, 2 weeks of 60mg and now reduced to 40mg, until the doctors start me on other meds, Have been offered to do a trial if I qualify using
Cookyboy1
in
Vasculitis UK
4 years ago
Mpa vasculitis
Hi all. I’ve recently been diagnosed with mpa after months of ilness and testing. Has anyone had eye problems and what other symptoms have you experienced? I currently have terrible trembling which is driving me mad. Is this down to steroids or cyclophosphamide? Thanks
Hi all. I’ve recently been diagnosed with mpa after months of ilness and testing. Has anyone had eye problems and what other symptoms have you experienced? I currently have terrible trembling which is driving me mad. Is this down to steroids or cyclophosphamide? Thanks
Hidden
in
Vasculitis UK
4 years ago
Still ANCA positive
Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!
Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!
kitkatmum
in
Vasculitis UK
4 years ago
Cutaneous Vasculitis (legs)
Hey! I was diagnosed with vasculitis leukocytoclastic in the beginning of november. I'm doing prednisolona since that time and I cant do other medication because I have Crohn disease (right now Im not doing any medication for crohn disease). I cant stand or walk for a long time because new marks appear
Hey! I was diagnosed with vasculitis leukocytoclastic in the beginning of november. I'm doing prednisolona since that time and I cant do other medication because I have Crohn disease (right now Im not doing any medication for crohn disease). I cant stand or walk for a long time because new marks appear
Carina03
in
Vasculitis UK
4 years ago
Bladder irritation after cyclophosphamide.
I was diagnosed with GPA vasculitis in 2016 and given two doses of cyclophosphamide.I was given Mesna tablets at the same time to protect the bladder as this was a known side effect of the treatment. Unfortunately after the second dose I became extremely ill very quickly and suffered vomiting which probably
I was diagnosed with GPA vasculitis in 2016 and given two doses of cyclophosphamide.I was given Mesna tablets at the same time to protect the bladder as this was a known side effect of the treatment. Unfortunately after the second dose I became extremely ill very quickly and suffered vomiting which probably
pigeon12
in
Vasculitis UK
4 years ago
New Mattress
Dear Vasculitis Friends, I haven't 'Posted', on here, for a while...So, first of all Happy New Year 2020. Secondly, how are you all? 'Well'?, well as well as possible, I hope. I'm still here, 'Lumbering' along...Still fat (now have 'Type 2' Diabetes), still get Joint Pain, Tummy Aches (and Constipation
Dear Vasculitis Friends, I haven't 'Posted', on here, for a while...So, first of all Happy New Year 2020. Secondly, how are you all? 'Well'?, well as well as possible, I hope. I'm still here, 'Lumbering' along...Still fat (now have 'Type 2' Diabetes), still get Joint Pain, Tummy Aches (and Constipation
AndrewT
in
Vasculitis UK
4 years ago
Is this coincidence or is there a connection
Hi all. I was diagnosed with GPA in 2017. Initial 6 month treatment of cyclophosphamide and prednisolone. I have had 2 relapses which were treated with courses of rutixumab. I have been on azathioprine now for 15 months and after a phased reduction of preds, I have been steroid free for 5 months. I
Hi all. I was diagnosed with GPA in 2017. Initial 6 month treatment of cyclophosphamide and prednisolone. I have had 2 relapses which were treated with courses of rutixumab. I have been on azathioprine now for 15 months and after a phased reduction of preds, I have been steroid free for 5 months. I
stuc
in
Vasculitis UK
5 years ago
Chronic fatigue
I was diagnosed with anca vasculitis MPA in May of 2017 it had a terrible effect on my eyes and my kidneys before I realized what I had. It now seems to be in remission(not getting any worse) but the fatigue is terrible. Exercise seems to make it even worse. Grocery shopping has become a real chore,
I was diagnosed with anca vasculitis MPA in May of 2017 it had a terrible effect on my eyes and my kidneys before I realized what I had. It now seems to be in remission(not getting any worse) but the fatigue is terrible. Exercise seems to make it even worse. Grocery shopping has become a real chore,
Retire3603
in
Vasculitis UK
5 years ago
Azathioprine and Mesalazine
The saga continues... I started taking azathioprine a week ago despite speaking to a pharmacist that my mesalazine was mentioned in the aza leaflet. He told me not to worry. It was fine. Today I was picking up my repeat prescriptions and saw that my more regular pharmacist was in and So I decided
The saga continues... I started taking azathioprine a week ago despite speaking to a pharmacist that my mesalazine was mentioned in the aza leaflet. He told me not to worry. It was fine. Today I was picking up my repeat prescriptions and saw that my more regular pharmacist was in and So I decided
DaftCat
in
LUPUS UK
5 years ago
Help
My husband has microscopic polyangiitis - was diagnosed in sept 16 - and is in remission or? He has the lasts months had BP going higher - some stomach pain - rashes on his arms and should go to control next week. For two weeks ago he got a flu and went to see our familidoctor. He sent him to gastroscopi
My husband has microscopic polyangiitis - was diagnosed in sept 16 - and is in remission or? He has the lasts months had BP going higher - some stomach pain - rashes on his arms and should go to control next week. For two weeks ago he got a flu and went to see our familidoctor. He sent him to gastroscopi
Lima51
in
Vasculitis UK
5 years ago
Left Rheumatologist appointment in floods of tears! Support needed :(
Hi there, in December last year my Dermatologist diagnosed me with
urticarial
vasculitis
and clinical subacute cutaneous lupus and I started on Hydroxychloroquine.
Hi there, in December last year my Dermatologist diagnosed me with
urticarial
vasculitis
and clinical subacute cutaneous lupus and I started on Hydroxychloroquine.
Apple86
in
LUPUS UK
5 years ago
Flu jab
I have GPA and just finished my course of cyclophosphamide. Feeling a lot better now. Just started Azathioprine which is being increased. I would like to know if it is recommended to have the dead flu virus injection? Thank you
I have GPA and just finished my course of cyclophosphamide. Feeling a lot better now. Just started Azathioprine which is being increased. I would like to know if it is recommended to have the dead flu virus injection? Thank you
brown136
in
Vasculitis UK
5 years ago
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