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Cerebral vasculitis
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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
5 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
5 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
5 years ago
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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
5 years ago
Advice needed
Hi. So I woke up with a red bruise like Mark under my left eye this morning, no pain or loss of vision. I went to my GP and he did my blood pressure, temp and pulse and all seems normal. I have had 2 flare ups of Urticarial vasculitis but haven't had one for nearly a year. Saw my dermatologist on
Hi. So I woke up with a red bruise like Mark under my left eye this morning, no pain or loss of vision. I went to my GP and he did my blood pressure, temp and pulse and all seems normal. I have had 2 flare ups of Urticarial vasculitis but haven't had one for nearly a year. Saw my dermatologist on
amywools26
in
Vasculitis UK
5 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
5 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
5 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
5 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
Cerebral Vasculitis to Vasculitis Dementia
I’ve become depressed and anxious so could the
Cerebral
Vasculitis
now be
Cerebral
Dementia.
I’ve become depressed and anxious so could the
Cerebral
Vasculitis
now be
Cerebral
Dementia.
phil3
in
Vasculitis 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
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
Cerebral Vasculitis - Cerebral Dementia
I’ve become depressed and anxious so could this
Cerebral
Vasculitis
now could be
Cerebral
Dementia. Just interested if anyone has Cerebral Dementia
I’ve become depressed and anxious so could this
Cerebral
Vasculitis
now could be
Cerebral
Dementia. Just interested if anyone has Cerebral Dementia
phil3
in
Anxiety Support
5 years ago
Anyone on Otezla?
I recently went to Mayo for a 3rd opinion. I was diagnosed with BD about 5 years ago and have been on 1G Cellcept for about 4 years now. I have very low symptoms. The one that has been the most annoying has been in my legs. I have knots that come up like they are going to turn into erythema nodosum then
I recently went to Mayo for a 3rd opinion. I was diagnosed with BD about 5 years ago and have been on 1G Cellcept for about 4 years now. I have very low symptoms. The one that has been the most annoying has been in my legs. I have knots that come up like they are going to turn into erythema nodosum then
Miataman
in
Behçet's UK
5 years ago
Help needed new here
been suffering with strange symptoms for 16 months. It all started with a buzzing in my feet which quickly travelled up my legs as akind of parasthesia. Shortly after fasiculations started initially in my legs but now all over. My worst problem is muscle cramping almost like a spasticity in my upper
been suffering with strange symptoms for 16 months. It all started with a buzzing in my feet which quickly travelled up my legs as akind of parasthesia. Shortly after fasiculations started initially in my legs but now all over. My worst problem is muscle cramping almost like a spasticity in my upper
audreypamela
in
LUPUS UK
5 years ago
Can Prolia trigger vasculitis
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
Corcaigh
in
Vasculitis UK
5 years ago
Azathioprine
Can I have your experiences of this drug please? My rheumy wants me to start this (as soon as my blood tests come back to show I’m healthy enough 😳) and I just don’t know...The side effects look daunting and it’s a carcinogen too? I feel like I’m damned if I do, damned if I don’t.
Can I have your experiences of this drug please? My rheumy wants me to start this (as soon as my blood tests come back to show I’m healthy enough 😳) and I just don’t know...The side effects look daunting and it’s a carcinogen too? I feel like I’m damned if I do, damned if I don’t.
DaftCat
in
LUPUS UK
5 years ago
Central lines?
What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?
What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?
samakaaaa
in
Vasculitis UK
5 years ago
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