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Cerebral vasculitis
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Very anxious about having IV Cyclophosphamide. need to hear of your experience with this drug.
Hi everyone, I really need your help. I have lung disease caused by lupus. currently my lupus is not under controlled and my lung capacity is diminishing. I am currently on prednisolone and hydroxychloroquine. The docs have advised me to have IV Cyclophosphamide, however I am very anxious about this
Hi everyone, I really need your help. I have lung disease caused by lupus. currently my lupus is not under controlled and my lung capacity is diminishing. I am currently on prednisolone and hydroxychloroquine. The docs have advised me to have IV Cyclophosphamide, however I am very anxious about this
field
in
LUPUS UK
6 years ago
How rare am I?
What club do I belong to? What's lurking?
Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical presentation" when discussing Granulomatosis with Polyangiitis (Wegener's). Possibly Central Nervous System (CNS) vasculitis. "We should consider
What club do I belong to? What's lurking?
Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical presentation" when discussing Granulomatosis with Polyangiitis (Wegener's). Possibly Central Nervous System (CNS) vasculitis. "We should consider
Canygirl61
in
Vasculitis UK
6 years ago
Vasculitis
Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th bday got diagnosed with small and medium cell vasculitis with systematic symptoms this shit disease has effect me badly, had many treatments some
Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th bday got diagnosed with small and medium cell vasculitis with systematic symptoms this shit disease has effect me badly, had many treatments some
tazmoe
in
Vasculitis UK
6 years ago
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Feeling worse with treatment
Recently diagnosed with mpo ANCA +ve Vasculitis and undergoing Aggresive stage of treatment now. Prednisone and cyclo. Trying to work with reasonable adjustments made by employers, mostly at home. Very tired. Consultant tells me I will feel better when aggressive intervention moves to maintenance. Is
Recently diagnosed with mpo ANCA +ve Vasculitis and undergoing Aggresive stage of treatment now. Prednisone and cyclo. Trying to work with reasonable adjustments made by employers, mostly at home. Very tired. Consultant tells me I will feel better when aggressive intervention moves to maintenance. Is
Katiz
in
Vasculitis UK
6 years ago
Heart racing after infusion for Wegeners
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
Balderick
in
Vasculitis UK
6 years ago
Rituximab or Mycophenolate
I've found out today that my lupus/
cerebral
vasculitis
is active again and they're looking to put me on Mycophenolate (again) or Rituximab. Seeing the Consultant again on Tuesday and it would be good to get the advice of lupies using Rituximab. I know lots about Mycophenolate already. Thanks xx
I've found out today that my lupus/
cerebral
vasculitis
is active again and they're looking to put me on Mycophenolate (again) or Rituximab. Seeing the Consultant again on Tuesday and it would be good to get the advice of lupies using Rituximab. I know lots about Mycophenolate already. Thanks xx
Lorska1
in
LUPUS UK
6 years ago
After Three years I am been taken off my medication for my illness Anca vasculitis.
On June 2015 I only had days to live my kidneys where at 6% I was send to hospital in Letterkenny Donegal IRELAND, After blood tests in A&E I was rushed into tensive care I was rushed by ambulance to beaumont hospital Dublin Where the consultant and team was waiting for me coming in the hospital
On June 2015 I only had days to live my kidneys where at 6% I was send to hospital in Letterkenny Donegal IRELAND, After blood tests in A&E I was rushed into tensive care I was rushed by ambulance to beaumont hospital Dublin Where the consultant and team was waiting for me coming in the hospital
Fred27
in
Vasculitis UK
6 years ago
Belimumab and Rituximab combo
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
LydiaG
in
LUPUS UK
6 years ago
Receiving ESA, now due a health assessment by ATOS
Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I am not in remission yet. I still feel unwell most days, fatigue and breathlessness being my primary symptoms just now. I did think that by now
Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I am not in remission yet. I still feel unwell most days, fatigue and breathlessness being my primary symptoms just now. I did think that by now
Suzycat
in
Vasculitis UK
6 years ago
Skin biopsy
Hi has anyone had biopsy and it shows another desese not Lupus ? Thanks in advance
Hi has anyone had biopsy and it shows another desese not Lupus ? Thanks in advance
suzierwp330
in
LUPUS UK
6 years ago
Vasculitis
As I understand it Wengers is the old name for anca vasculitis first thing my consultant did was to biopsy my kidney it was negative but I still have the antibodies for anca so I'm now waiting for another biopsy they're a bit worried though lost one kidney to cancer
As I understand it Wengers is the old name for anca vasculitis first thing my consultant did was to biopsy my kidney it was negative but I still have the antibodies for anca so I'm now waiting for another biopsy they're a bit worried though lost one kidney to cancer
Glenville
in
Vasculitis UK
6 years ago
ANCA negative now!
After just two Rituxan infusions, two weeks apart, my ANCA has gone to negative. It was 1:128 since the first testing January 12 (and my diagnosis of MPA was on January 19), then in early May it went to 1:64 after treatment for a life-threatening attack on my lungs that put me in the hospital 8 days
After just two Rituxan infusions, two weeks apart, my ANCA has gone to negative. It was 1:128 since the first testing January 12 (and my diagnosis of MPA was on January 19), then in early May it went to 1:64 after treatment for a life-threatening attack on my lungs that put me in the hospital 8 days
PattyMPA
in
Vasculitis UK
6 years ago
Lupus, factor 5 lieden, raynauds, multifocal long bone avascular necrosis
Hi, new here and dont normally introduce myself with illness list but am desperate for advice. Have had avascular necrosis in hip joints (now replaced) and distal tibia (bone grafted) and now have it in long bones (joint space preserved so joint replacement futile) its extensive and drs i see at leeds
Hi, new here and dont normally introduce myself with illness list but am desperate for advice. Have had avascular necrosis in hip joints (now replaced) and distal tibia (bone grafted) and now have it in long bones (joint space preserved so joint replacement futile) its extensive and drs i see at leeds
popclarky
in
LUPUS UK
6 years ago
FUNGAL INFECTION RISK FOR PEOPLE ON IMMUNOSUPPRESSANT DRUGS
There have been a number of reports lately regarding the risks of serious and untreatable fungal infections for those on immunosuppressive medication, which is likely to include many people being treated for vasculitis. Garden compost heaps have been mentioned as a particular risk. See link to piece
There have been a number of reports lately regarding the risks of serious and untreatable fungal infections for those on immunosuppressive medication, which is likely to include many people being treated for vasculitis. Garden compost heaps have been mentioned as a particular risk. See link to piece
MAC12
in
Vasculitis UK
6 years ago
Need advice on the disease
Hello it's my 3rd month I'm on immunosuppression drugs ,,I have got red colour marks in stomach n legs ,,is it due to drugs or due to the disease which m having ,,n will these marks LL remain forever m having diffuse avelour heammorage it's a kind of vasculitis the doctor said I have got plasma exchange
Hello it's my 3rd month I'm on immunosuppression drugs ,,I have got red colour marks in stomach n legs ,,is it due to drugs or due to the disease which m having ,,n will these marks LL remain forever m having diffuse avelour heammorage it's a kind of vasculitis the doctor said I have got plasma exchange
Dineshbothra123
in
Vasculitis UK
6 years ago
I'm New Here
I was diagnosed with GPA Vasculitis in May 2017 after suffering from various symptoms for 2 years previously. Had 6 treatments of cyclophosphamide and am now on 125mg daily of Azathioprine and am doing ok. I seem to be suffering from joint pain and what also feels like pain in my muscles in the tops
I was diagnosed with GPA Vasculitis in May 2017 after suffering from various symptoms for 2 years previously. Had 6 treatments of cyclophosphamide and am now on 125mg daily of Azathioprine and am doing ok. I seem to be suffering from joint pain and what also feels like pain in my muscles in the tops
NikkiFlack
in
Vasculitis UK
6 years ago
Relapsing polychondritis
Hello, everyone. I was diagnosed with MPA ten years ago and have recently had a nasty flare which has been treated with Rituximab but this time does not seem to be working too well. I have had a very inflamed outer ear ( the pinna) which has been itchy and developed nodules along the edge of it. Did
Hello, everyone. I was diagnosed with MPA ten years ago and have recently had a nasty flare which has been treated with Rituximab but this time does not seem to be working too well. I have had a very inflamed outer ear ( the pinna) which has been itchy and developed nodules along the edge of it. Did
trebar
in
Vasculitis UK
6 years ago
Seizures
Hi my husband has
Cerebral
Vasculitis
, diagnosed in 2013. He has experienced his second tonic clonic seizure in the last 8 months. He is still on azathioprine due to his seizures, so that will be nearly 5 years in September. Has anyone else experienced seizures who have
cerebral
vasculitis
?
Hi my husband has
Cerebral
Vasculitis
, diagnosed in 2013. He has experienced his second tonic clonic seizure in the last 8 months. He is still on azathioprine due to his seizures, so that will be nearly 5 years in September. Has anyone else experienced seizures who have
cerebral
vasculitis
?
Simmonds797
in
Vasculitis UK
6 years ago
Hello, I am new to the group, and am not even sure I belong...From Parkinsons to possible Cerebral Vasculitis plus MS.?? Let me explain..
So further blood tests, the three Neurologists all seem to think I have
Cerebral
Vasculitis
and /or a rare form of MS. SoI am waiting to go in for my lumbar puncture, have to wait till the cortisone is well and truly out of my system. So May 18th I am set to go back into hospital.
So further blood tests, the three Neurologists all seem to think I have
Cerebral
Vasculitis
and /or a rare form of MS. SoI am waiting to go in for my lumbar puncture, have to wait till the cortisone is well and truly out of my system. So May 18th I am set to go back into hospital.
Bools33
in
Vasculitis UK
6 years ago
vasculitis dilate or contract
I have vasculitis in my lungs i have bled into them needing transfusions one site is telling me my blood vessels dilate and i bleed into my lungs the others tell me my blood vessels get inflamed swell up and stop the flow thats why i cant breath just wondering which is it they swell up contract or dilate
I have vasculitis in my lungs i have bled into them needing transfusions one site is telling me my blood vessels dilate and i bleed into my lungs the others tell me my blood vessels get inflamed swell up and stop the flow thats why i cant breath just wondering which is it they swell up contract or dilate
jackiecambeltown
in
Vasculitis UK
6 years ago
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