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Experiences with
Cerebral vasculitis
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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
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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
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
Pachimeningitis, Are you out there?
Is
cerebral
vasculitis
the same as pachimeningitis?
Is
cerebral
vasculitis
the same as pachimeningitis?
Packie
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
Trying my new anti tremor spoon
I have very shaky hands from
cerebral
vasculitis
. It beeps when you plug it in! Going well so far. It’s sometimes called the Google Spoon. Eating Singapore Fried Rice tonight. It has little sensors and motors in it to adjust to reduce the effects of shaking, and to keep the spoon level.
I have very shaky hands from
cerebral
vasculitis
. It beeps when you plug it in! Going well so far. It’s sometimes called the Google Spoon. Eating Singapore Fried Rice tonight. It has little sensors and motors in it to adjust to reduce the effects of shaking, and to keep the spoon level.
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
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
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
Pain and stiffness - menopause or something else?
I was put on pred, mycophenolate and alendronic acid for 2 years in 2008 after several strokes and many tests which concluded in a diagnosis of primary (
cerebral
)
vasculitis
. I recovered exceptionally well and still take blood thinners now.
I was put on pred, mycophenolate and alendronic acid for 2 years in 2008 after several strokes and many tests which concluded in a diagnosis of primary (
cerebral
)
vasculitis
. I recovered exceptionally well and still take blood thinners now.
U06334
in
PMRGCAuk
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
Two blog posts on “Living with Covid”
He has zero antibodies from the Covid vaccine, because of treatment for arthritis and
cerebral
vasculitis
. He’s understandably concerned about current English Covid policy. Anyway I thought his post was a really good public awareness one.
He has zero antibodies from the Covid vaccine, because of treatment for arthritis and
cerebral
vasculitis
. He’s understandably concerned about current English Covid policy. Anyway I thought his post was a really good public awareness one.
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
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