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Cerebral vasculitis
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Vasculitis (especially CNS/cerebral) and incontinence
I was helping another
cerebral
/CNS
vasculitis
patient tonight about incontinence. Which can be a common symptom of brain
vasculitis
, whether a primary CNS/
cerebral
vasculitis
, or secondary brain involvement from a systemic vasculitis like GPA.
I was helping another
cerebral
/CNS
vasculitis
patient tonight about incontinence. Which can be a common symptom of brain
vasculitis
, whether a primary CNS/
cerebral
vasculitis
, or secondary brain involvement from a systemic vasculitis like GPA.
vivdunstan
Volunteer
in
Vasculitis UK
4 months ago
”Progressive”
I have a progressive form of
cerebral
vasculitis
, though am doing good to still be here after 29 years! It started in 1994 when I was just 22. Hugely neurologically disabling, and progressive, despite masses of treatment thrown at it. So it was a shock last week to get a call for jury duty.
I have a progressive form of
cerebral
vasculitis
, though am doing good to still be here after 29 years! It started in 1994 when I was just 22. Hugely neurologically disabling, and progressive, despite masses of treatment thrown at it. So it was a shock last week to get a call for jury duty.
vivdunstan
Volunteer
in
Vasculitis UK
1 year ago
Does anyone have experience of how Large Vessel Vasculitis (GCA /TA) may be affected by a long haul flight?
I’ve never experienced a long haul flight and, as we prefer to drive when we holiday abroad, I haven’t been on a plane for 15 years but I am booked to go to S Korea next week to visit my granddaughter who is currently teaching in Seoul. In August I was diagnosed with Large Vessel Vasculitis and the consultant
I’ve never experienced a long haul flight and, as we prefer to drive when we holiday abroad, I haven’t been on a plane for 15 years but I am booked to go to S Korea next week to visit my granddaughter who is currently teaching in Seoul. In August I was diagnosed with Large Vessel Vasculitis and the consultant
Obscureclouds
in
Vasculitis UK
19 hours ago
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Biologics - when/did you move up to them?
Trying to get a measure of the stages and various meds that treat lupus, and wondering if/when anyone was moved up to biologics like Belimumab and Rituximab. I understand lupus is treated softly softly, as in mildest immune suppressants first and gradually move up the ladder, and biologics are stronger
Trying to get a measure of the stages and various meds that treat lupus, and wondering if/when anyone was moved up to biologics like Belimumab and Rituximab. I understand lupus is treated softly softly, as in mildest immune suppressants first and gradually move up the ladder, and biologics are stronger
smeackles
in
LUPUS UK
5 days ago
VASCULITIS CLASSIFICATION:
need help here , GCA is a large vessel vasculitis but it shows up on the temporal artery which is not a large vessel. PAN is medium vessel, but cant even find out what constitutes a medium vessel. But skin symptoms are mentioned which are small vessels. I have my carotid external painful, hard and
need help here , GCA is a large vessel vasculitis but it shows up on the temporal artery which is not a large vessel. PAN is medium vessel, but cant even find out what constitutes a medium vessel. But skin symptoms are mentioned which are small vessels. I have my carotid external painful, hard and
Oztrax
in
Vasculitis UK
18 days ago
COGANS SYNDROME
There are around 500 cases of this in the world, so is extremely rare, which means diagnosis becomes even more difficult. CG as its referred to is a form of multi vessel vasculitis so symptons end up pretty broad. Why so few cases is a lot of researchers believe there a lot of undiagnosed cases out
There are around 500 cases of this in the world, so is extremely rare, which means diagnosis becomes even more difficult. CG as its referred to is a form of multi vessel vasculitis so symptons end up pretty broad. Why so few cases is a lot of researchers believe there a lot of undiagnosed cases out
Oztrax
in
Vasculitis UK
19 days ago
ANCA BLOOD TEST
Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist and GP are testing for ANCA vasculitis. How conclusive is a positive ANCA blood test ? they are testing ANCA (doesnt say C or P so assume
Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist and GP are testing for ANCA vasculitis. How conclusive is a positive ANCA blood test ? they are testing ANCA (doesnt say C or P so assume
Oztrax
in
Vasculitis UK
24 days ago
Compression socks for travel
Hello, wondering if anyone has a good experience with compression socks for long haul travel? I do experience some feet swelling these days during the day which usually goes away with elevation for a brief period of time. I have flights coming up in the 7 to 14 hour range so am thinking that apart
Hello, wondering if anyone has a good experience with compression socks for long haul travel? I do experience some feet swelling these days during the day which usually goes away with elevation for a brief period of time. I have flights coming up in the 7 to 14 hour range so am thinking that apart
Support_helps
in
Vasculitis UK
2 months ago
rash vasculitis
I have a diagnosis of
cerebral
vasculitis
from around 16 years ago. Lately I have noticed raised pimples on my legs. Any idea ? Does anyone else have experience of this ? many thanks
I have a diagnosis of
cerebral
vasculitis
from around 16 years ago. Lately I have noticed raised pimples on my legs. Any idea ? Does anyone else have experience of this ? many thanks
blackgolf
in
Vasculitis UK
1 year ago
Erosive Arthritis and Vasculitis
Hi, just wanted to know if anyone out there with vasculitis GPA, is experiencing erosive arthritis in their hands? I have over the last year experienced a lot of pain in my hands and have a growth on one of my fingers, which is apparently a soft tissue swelling. I just wanted to know if this is something
Hi, just wanted to know if anyone out there with vasculitis GPA, is experiencing erosive arthritis in their hands? I have over the last year experienced a lot of pain in my hands and have a growth on one of my fingers, which is apparently a soft tissue swelling. I just wanted to know if this is something
Tbrz
in
Vasculitis UK
2 months ago
Renal Diet Confusion
Hello, apologies if this may be repetitive in the Group but I'm now about 3 months into my renal limited vasculitis diagnosis and one of the areas I find mind boggling is that of proper dieting. There is no shortage of information out there but a lot of it seems to
conflict.
Would be grateful
Hello, apologies if this may be repetitive in the Group but I'm now about 3 months into my renal limited vasculitis diagnosis and one of the areas I find mind boggling is that of proper dieting. There is no shortage of information out there but a lot of it seems to
conflict.
Would be grateful
Support_helps
in
Vasculitis UK
2 months ago
Medication Change mid-Induction
Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR
Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR
Support_helps
in
Vasculitis UK
3 months ago
Anca vasculitis
I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis
I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis
Westley
in
Vasculitis UK
3 months ago
May - Vasculitis Awareness Month
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
zoe69
Vasculitis UK
in
Vasculitis UK
4 months ago
May- Vasculitis Awareness Month
May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening. Now, six years on, I have
May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening. Now, six years on, I have
zoe69
Vasculitis UK
in
Vasculitis UK
4 months ago
Vasculitis in the pancreas?
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Sandalsforever
in
Vasculitis UK
4 months ago
May is Vasculitis Awarenes Month
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
zoe69
Vasculitis UK
in
Vasculitis UK
5 months ago
May - Vasculitis awareness month
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
zoe69
Vasculitis UK
in
Vasculitis UK
5 months ago
Vasculitis Awarenes Month
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
zoe69
Vasculitis UK
in
Vasculitis UK
5 months ago
Hip replacement surgery
Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time. Surgeon has been made aware of Et situation. I just wondered if anyone has encountered any problems or issues, or whether the procedure was straight
Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time. Surgeon has been made aware of Et situation. I just wondered if anyone has encountered any problems or issues, or whether the procedure was straight
Oscarsboy
in
MPN Voice
6 months ago
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