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Experiences with
Urticarial vasculitis
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Tested Positive - while on Rituximab - Seriously worried
Tested Positive - Got up yesterday felt a bit heady, ran my normal test and OMG - Positive. Rang my consultants admin they completed form and contacted yesterday by a snotty woman from NHS who didn’t have a clue about Vasculitis or GPA and the potential of getting seriously ill while on Rituximab. Finally
Tested Positive - Got up yesterday felt a bit heady, ran my normal test and OMG - Positive. Rang my consultants admin they completed form and contacted yesterday by a snotty woman from NHS who didn’t have a clue about Vasculitis or GPA and the potential of getting seriously ill while on Rituximab. Finally
Investigator1
in
Vasculitis UK
2 years ago
Anyone familiar with DNMT3A?
Hi everyone, hope all is well with everyone! Btw some updates about my mpn, I’ve just got my results from NGS test recently, as a result got my jak2 and DNMT3A positive, so now I’m confirmed primary myelofibrosis and 5 days ago I’ve gone through routine endoscopy (as a result ligation in several spots
Hi everyone, hope all is well with everyone! Btw some updates about my mpn, I’ve just got my results from NGS test recently, as a result got my jak2 and DNMT3A positive, so now I’m confirmed primary myelofibrosis and 5 days ago I’ve gone through routine endoscopy (as a result ligation in several spots
Dan39
in
MPN Voice
2 years ago
Case Review at Major Teaching Hospital Part 2
To the 3 people that responded to my original post, thank you. The case review was at best a complete failure and waste of my time and gas money. Never mind the stress before, during, and after. I had emailed the 8 sets of lab work & tests including the two done last month. I called June 3 to ensure
To the 3 people that responded to my original post, thank you. The case review was at best a complete failure and waste of my time and gas money. Never mind the stress before, during, and after. I had emailed the 8 sets of lab work & tests including the two done last month. I called June 3 to ensure
irishponies
in
Vasculitis UK
2 years ago
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Experiences with Cyclophosphamide
My Consultant is considering adding a course of cyclophosphamide to my treatment plan. I am reading as much as I can about it but am keen to know how people felt if they have had the drug. - how did you feel after each infusion, how long did it take after each infusion to feel better - did you find
My Consultant is considering adding a course of cyclophosphamide to my treatment plan. I am reading as much as I can about it but am keen to know how people felt if they have had the drug. - how did you feel after each infusion, how long did it take after each infusion to feel better - did you find
SnowSeeker19
in
LUPUS UK
2 years ago
Diagnosed with MPO ANCA August 2021, following 1st Covid vaccine. Started on 25mg Prednisolone and had 3 doses of Rituximab, last one 1/3/22
I have been following this forum for a little while and I have found it very informative and helpfull so much so, that I thought I might put my case out there to help guide me on this journey. In Marchy 2022, was also diagnosed with Pulmonary fibrosis as a result of the vasculities , now 75% lung capacity
I have been following this forum for a little while and I have found it very informative and helpfull so much so, that I thought I might put my case out there to help guide me on this journey. In Marchy 2022, was also diagnosed with Pulmonary fibrosis as a result of the vasculities , now 75% lung capacity
HappyLung
in
Vasculitis UK
2 years ago
New to ANCA Vasculitis
I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate
I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate
GinnyMa
in
Vasculitis UK
2 years ago
Curcumin Real Clinical Study, Anti Inflam
Came across this one. I think it's a rare Curc study using real people, vs animal or lab tests. It's looking for benefits in kidney disease. I was looking to find whether Curc might be a negative for kidney but positive implications come up for reasonable doses. https://clinicaltrials.gov/ct2/show
Came across this one. I think it's a rare Curc study using real people, vs animal or lab tests. It's looking for benefits in kidney disease. I was looking to find whether Curc might be a negative for kidney but positive implications come up for reasonable doses. https://clinicaltrials.gov/ct2/show
EPguy
in
MPN Voice
2 years ago
Evusheld not ordered yet by the UK government
The Guardian has run a story today about this, quoting the Astra Zeneca boss, saying that “The UK is probably one of the rare developed countries in the world that has not ordered Evusheld. It’s a sad situation, quite frankly, because people who are immune-compromised are really suffering from the Covid
The Guardian has run a story today about this, quoting the Astra Zeneca boss, saying that “The UK is probably one of the rare developed countries in the world that has not ordered Evusheld. It’s a sad situation, quite frankly, because people who are immune-compromised are really suffering from the Covid
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
Chest infection
My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control. He’s currently in hospital with a chest infection, They stopped his Azathioprine while he was on antibiotics which has now cleared up but his infection markers
My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control. He’s currently in hospital with a chest infection, They stopped his Azathioprine while he was on antibiotics which has now cleared up but his infection markers
Louloulou40
in
Vasculitis UK
2 years ago
PR3 Anca Vasculitis diagnosed 2020, Had last I fusion until needed November 2021, lung and bowel issues plus rash
Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head, Blood test came back weak positive C Anca and 4.9 pr3 anca positive has this got anything to do with how I'm feeling.
Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head, Blood test came back weak positive C Anca and 4.9 pr3 anca positive has this got anything to do with how I'm feeling.
Cookyboy1
in
Vasculitis UK
2 years ago
Tingling feet and ANCA
Had GCA in 2015 and on prednisone for 4 years…then no relapse but diagnosed with PMR in Dec. 2021. And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease
Had GCA in 2015 and on prednisone for 4 years…then no relapse but diagnosed with PMR in Dec. 2021. And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease
GinnyMa
in
Vasculitis UK
2 years ago
Granulomatosis with polyangiitis and nose bleeds
Hi everyone, I am new to the site so please forgive me if this question has already been asked and answered. I have been suffering from various symptoms for just over a year and was diagnosed with Vasculitis - Granulomatosis with polyangiitis in mid 2021. I am still finding it very hard to come to terms
Hi everyone, I am new to the site so please forgive me if this question has already been asked and answered. I have been suffering from various symptoms for just over a year and was diagnosed with Vasculitis - Granulomatosis with polyangiitis in mid 2021. I am still finding it very hard to come to terms
Wyllow
in
Vasculitis UK
2 years ago
Anyone else stopping RITUXIMAB
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Maverick77
in
LUPUS UK
3 years ago
Heavy legs
I have
Urticarial
Vasculitis
(around 28years) and have for around 6 months have been having cramps in my calves ankles and feet ( and occasionally in other parts of my body ,although they seem to have stopped ) now my legs are feeling heavy and I do get pins and needles in my feet , The cramps do go
I have
Urticarial
Vasculitis
(around 28years) and have for around 6 months have been having cramps in my calves ankles and feet ( and occasionally in other parts of my body ,although they seem to have stopped ) now my legs are feeling heavy and I do get pins and needles in my feet , The cramps do go
jackrussell
in
Vasculitis UK
3 years ago
My journey
Hello there, my name is Simon, I had stroke last February, spent a lot of time in hospital for the next few months, having multiple CT scans, a brain biopsy,, which didn't show anything, my consultant originally diagnosed me with SUSAC syndrome, and after hiccup in September whilst on holiday down Cornwell
Hello there, my name is Simon, I had stroke last February, spent a lot of time in hospital for the next few months, having multiple CT scans, a brain biopsy,, which didn't show anything, my consultant originally diagnosed me with SUSAC syndrome, and after hiccup in September whilst on holiday down Cornwell
PhoenixJ75
in
Vasculitis UK
3 years ago
Rituximab
After the awful problems I had when switched to Azathioprine, which obvs was stopped, today I go for my first Ritubimax infusion. Apparently it takes 6 hours, and a second infusion to be given a fortnight later which will take about 4 hours. Do any of you have any experience of this? What to expect
After the awful problems I had when switched to Azathioprine, which obvs was stopped, today I go for my first Ritubimax infusion. Apparently it takes 6 hours, and a second infusion to be given a fortnight later which will take about 4 hours. Do any of you have any experience of this? What to expect
joanneM200
in
LUPUS UK
3 years ago
Diagnoses
I have been unwell for the last 18 months on and off, I have had 3 blood tests that have come back with a positive ANCA result, my GP didn’t tell me for the first 3 months until my second result come back, now I am on a waiting list of approximately 34 weeks to speak to the rheumatology department, any
I have been unwell for the last 18 months on and off, I have had 3 blood tests that have come back with a positive ANCA result, my GP didn’t tell me for the first 3 months until my second result come back, now I am on a waiting list of approximately 34 weeks to speak to the rheumatology department, any
Hazbaz57
in
Vasculitis UK
3 years ago
Is leflunomide causing my chest/heart 'flutters' or might it be a build up of inflammation?
I was diagnosed with PMR in February 2018 and until now my posts have been confined to the PMRGCA forum. I now need advice from Vasculitis UK. I was diagnosed with asymptomatic large vessel vasculitis in September 2020. An ultrasound scan of axillary arteries showed right axillary 1MT 1.8mm and left
I was diagnosed with PMR in February 2018 and until now my posts have been confined to the PMRGCA forum. I now need advice from Vasculitis UK. I was diagnosed with asymptomatic large vessel vasculitis in September 2020. An ultrasound scan of axillary arteries showed right axillary 1MT 1.8mm and left
123-go
in
Vasculitis UK
3 years ago
Working in schools with Vasculitis
Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit I am really worried about returning to school in September, especially how the COVID infections were increasing before the summer. Are there any other teachers out there with the condition and how are you coping with working
Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit I am really worried about returning to school in September, especially how the COVID infections were increasing before the summer. Are there any other teachers out there with the condition and how are you coping with working
Dave34
in
Vasculitis UK
3 years ago
Chronic Urticaria or Urticarial Vasculitis
These have happened with every flare but I had no idea about
urticarial
vasculitis
until having a desperate research last night about the bruising I’m getting. So long story short, can anyone give me any advise on here? Have you been misdiagnosed before?
These have happened with every flare but I had no idea about
urticarial
vasculitis
until having a desperate research last night about the bruising I’m getting. So long story short, can anyone give me any advise on here? Have you been misdiagnosed before?
Shannonkate93
in
Vasculitis UK
3 years ago
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