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Urticarial vasculitis
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New to vasculitis
Hi I recently got DX with vasculitis after suffering a terrible skin rash after my 6th covid jab ,I'm still not sure that's the cause but that's what dermatology are telling me . Anyway 4 months on still got outbreaks mainly face ,chest back spots and dark patches around my groin area. I have lost wieght
Hi I recently got DX with vasculitis after suffering a terrible skin rash after my 6th covid jab ,I'm still not sure that's the cause but that's what dermatology are telling me . Anyway 4 months on still got outbreaks mainly face ,chest back spots and dark patches around my groin area. I have lost wieght
cartwheels
in
Vasculitis UK
1 year ago
Low white cells
Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienced low white blood cell due to azathioprine. I have sle and have been on these for years. Recently I had bloods done as I was feeling so run down my wcc is 1.5 and neut is 0.75. I'm waiting on a call back from rheumatologist
Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienced low white blood cell due to azathioprine. I have sle and have been on these for years. Recently I had bloods done as I was feeling so run down my wcc is 1.5 and neut is 0.75. I'm waiting on a call back from rheumatologist
Lioness42
in
LUPUS UK
1 year ago
Orthodontics Appointment cancelled for the 4th time
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Hidden
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MPN Voice
1 year ago
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Vasculitis and rheumatoid arthritis
Hi,Just a quick question, is anybody seen by vasculitis clinic and rheumatology, or just one or the other. I am only seen by rheumatology but at first diagnosis I was seen in the vasculitis clinic . I have poly granulamotis along with rheumatoid arthritis, but I am getting the feeling when I go to
Hi,Just a quick question, is anybody seen by vasculitis clinic and rheumatology, or just one or the other. I am only seen by rheumatology but at first diagnosis I was seen in the vasculitis clinic . I have poly granulamotis along with rheumatoid arthritis, but I am getting the feeling when I go to
tina73
in
Vasculitis UK
1 year ago
Uveitis treatment opinion please
I have been an intermediate uveitis patient ( vasculitis of the eye) for about 18 months now. Have had several steroid implants in the eye and has been on methotexrate injections for 6 months now. But the oedema due to vasculitis is coming back repeatedly. So seems like I have 2 options now in terms
I have been an intermediate uveitis patient ( vasculitis of the eye) for about 18 months now. Have had several steroid implants in the eye and has been on methotexrate injections for 6 months now. But the oedema due to vasculitis is coming back repeatedly. So seems like I have 2 options now in terms
Udupik
in
Vasculitis UK
1 year ago
tapering off azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
stuc
in
Vasculitis UK
1 year ago
Rituximab
Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and reassurance would be a great help Many thanks in advance. Kind Regards SfS
Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and reassurance would be a great help Many thanks in advance. Kind Regards SfS
sorefeetsoldier
in
Vasculitis UK
1 year ago
stomach
Thankyou for your replies. I have had a camera down into my stomach before I was diagnosed . It showed lesions , which must have been connected with my vasculitis. The only thing to have helped is when I have an infusion of rituximab. Unfortunately it does not last the six months . Most days I can eat
Thankyou for your replies. I have had a camera down into my stomach before I was diagnosed . It showed lesions , which must have been connected with my vasculitis. The only thing to have helped is when I have an infusion of rituximab. Unfortunately it does not last the six months . Most days I can eat
artists
in
Vasculitis UK
2 years ago
Life after Rituximab? What is the next chapter?
Diagnose with GPA in December 2019 and after the usual cocktail of Steroids Cyclophosphamide and an unsuccessful spell with Azathioprine I now approach my next infusion of Rituximab in a couple of weeks. My Consultant is saying because my ANCA marker is so low this should be my last one. So what happens
Diagnose with GPA in December 2019 and after the usual cocktail of Steroids Cyclophosphamide and an unsuccessful spell with Azathioprine I now approach my next infusion of Rituximab in a couple of weeks. My Consultant is saying because my ANCA marker is so low this should be my last one. So what happens
Investigator1
in
Vasculitis UK
2 years ago
Rituximab for Rheumatoid Vasculitis
hi,. I have Rheumatoid Vasculitis (diagnosed April 2022), RA, Peripheral Neuropathy and several lung problems. I had an infusion of Rituximab on June 2022 and have felt no improvement whatsoever. All my illnesses remain as bad as ever. Anyone else have Rheumatoid Vasculitis and had RTX and have noticed
hi,. I have Rheumatoid Vasculitis (diagnosed April 2022), RA, Peripheral Neuropathy and several lung problems. I had an infusion of Rituximab on June 2022 and have felt no improvement whatsoever. All my illnesses remain as bad as ever. Anyone else have Rheumatoid Vasculitis and had RTX and have noticed
sunshineday
in
Vasculitis UK
2 years ago
Sjogrens and
can anyone tell me anything about the links between Sjogrens, vasculitis, and possibly GERD as well?
can anyone tell me anything about the links between Sjogrens, vasculitis, and possibly GERD as well?
Coppernob
in
Vasculitis UK
2 years ago
Evusheld availability in UK
Actually, I did receive a dose of Evusheld back in January 2021 as part of the PROVENT trial when it was called AZD7442. It was a painless intramuscular injection in each buttock. Unfortunately, it only lasts for 6-12 months. I have managed to avoid Covid-19 so I am not sure that I have demonstrated
Actually, I did receive a dose of Evusheld back in January 2021 as part of the PROVENT trial when it was called AZD7442. It was a painless intramuscular injection in each buttock. Unfortunately, it only lasts for 6-12 months. I have managed to avoid Covid-19 so I am not sure that I have demonstrated
RichardGPA65yrs
in
Vasculitis UK
2 years ago
Update on change of meds
Hi all just a little update i saw my consultant yesterday he has now increased my myfenax from 500mg a day to 1500mg a day still on 15mg preds i asked again about having ritiximab he said to much ritiximab is no good i dont know what he meant by that? I have only had 2 100ml infusions of ritiximab that
Hi all just a little update i saw my consultant yesterday he has now increased my myfenax from 500mg a day to 1500mg a day still on 15mg preds i asked again about having ritiximab he said to much ritiximab is no good i dont know what he meant by that? I have only had 2 100ml infusions of ritiximab that
tomo1854
in
Vasculitis UK
2 years ago
Re Scottish autumn 2022 vaccine appointments
For any fellow Scots due an autumn/winter vaccine it’s a good idea to keep an eye on the Scottish appointments website vacs.nhs.scot My autumn/winter vaccines appointment has showed up there but I haven’t had any email this time and haven’t got my letter yet. My husband has been given an appointment
For any fellow Scots due an autumn/winter vaccine it’s a good idea to keep an eye on the Scottish appointments website vacs.nhs.scot My autumn/winter vaccines appointment has showed up there but I haven’t had any email this time and haven’t got my letter yet. My husband has been given an appointment
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
Vasculitis Behcets and Life Insurance
Hi All, I've not been on for a while, diagnosed with Behcets just over a year ago.. My wife and I signed up for life insurwnce recently, hers went through no problems, mine they had to ask GP (even though they know absolutely nothing about Behcets) for more information. I still have some blood
Hi All, I've not been on for a while, diagnosed with Behcets just over a year ago.. My wife and I signed up for life insurwnce recently, hers went through no problems, mine they had to ask GP (even though they know absolutely nothing about Behcets) for more information. I still have some blood
Rusoul
in
Behçet's UK
2 years ago
Ever Elusive Remission
Everyone is so supportive in this group! Thanks! I admit to being jealous every time I read "I am in remission". I myself, am NOT in remission. Meds: Prednisone 5 mg daily (20 mg in Aug 2021 through March 2022 - almost no taper just reduced to 5 due to side effects) Methotrexate 20 mg since Dec 2021
Everyone is so supportive in this group! Thanks! I admit to being jealous every time I read "I am in remission". I myself, am NOT in remission. Meds: Prednisone 5 mg daily (20 mg in Aug 2021 through March 2022 - almost no taper just reduced to 5 due to side effects) Methotrexate 20 mg since Dec 2021
irishponies
in
Vasculitis UK
2 years ago
Has anyone come off prednisolone completely for Vasculitis GPA?
Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the time I was diagnosed with an ANCA count of >177, it has just got down to 0 and I am on many medications including Methotrexate, Micophenolate Mofetil, Co-trimoxazole, 2 lots of blood pressure meds, Prednisolone and others.
Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the time I was diagnosed with an ANCA count of >177, it has just got down to 0 and I am on many medications including Methotrexate, Micophenolate Mofetil, Co-trimoxazole, 2 lots of blood pressure meds, Prednisolone and others.
Wyllow
in
Vasculitis UK
2 years ago
New to vasculitis
Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs young. Lonely journey with little to no direction from doctors as rare. Start 1st cyclophosphamide Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?
Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs young. Lonely journey with little to no direction from doctors as rare. Start 1st cyclophosphamide Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?
Twin7
in
Vasculitis UK
2 years ago
An Update on my previous post. Just started Cyclophosphamide infusions.
Just an update on my previous post. Had my first Cyclophosphamide infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they give you anti sickness pills in case you need them. Metoclopramide. Last couple of days felt very tired and breathless, some stomach ache and acute
Just an update on my previous post. Had my first Cyclophosphamide infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they give you anti sickness pills in case you need them. Metoclopramide. Last couple of days felt very tired and breathless, some stomach ache and acute
HappyLung
in
Vasculitis UK
2 years ago
Blood transfusions causing dramatic reactions
I understand some MPN sufferers have blood transfusions/top-ups from time to time. Do any of you have adverse reactions to having this "new" blood in your body? My wife is back in hospital with another GI bleed and needing blood. In the past when she has blood, normally packed RBC bags. She gets a high
I understand some MPN sufferers have blood transfusions/top-ups from time to time. Do any of you have adverse reactions to having this "new" blood in your body? My wife is back in hospital with another GI bleed and needing blood. In the past when she has blood, normally packed RBC bags. She gets a high
jointpain
in
MPN Voice
2 years ago
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