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Cerebral vasculitis
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Vasculitus
I have just started Myfenax 1000mg with 50g Prednisolone & 600mg Pregabin I have vasculitis and Neuropathy and my skin has become very sensitive very itchy
I have just started Myfenax 1000mg with 50g Prednisolone & 600mg Pregabin I have vasculitis and Neuropathy and my skin has become very sensitive very itchy
Trilliano73
in
Vasculitis UK
5 years ago
MPO with impaired kidneys
Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had a course of cyclophosphomide, steroids and now on azathioprine. I'm on remission and reducing steroid 1 mg every month. Of late I have developed pain on my left arm & shoulder blade. Remember having read some body experiencing
Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had a course of cyclophosphomide, steroids and now on azathioprine. I'm on remission and reducing steroid 1 mg every month. Of late I have developed pain on my left arm & shoulder blade. Remember having read some body experiencing
xz3sgn
in
Vasculitis UK
5 years ago
Shingles mark 2
I’ve got shingles again - last time was in 2010, following chickenpox before in 1998, all when immunosuppressed after my
cerebral
vasculitis
diagnosis in 1997.
I’ve got shingles again - last time was in 2010, following chickenpox before in 1998, all when immunosuppressed after my
cerebral
vasculitis
diagnosis in 1997.
vivdunstan
Volunteer
in
Vasculitis UK
5 years ago
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Is vasculitis life threatening?
My husband suffers with osteoporosis and osteoarthritis and this has got worse over the last 3 years such that he has had 2 spinal operations and now uses a manual wheelchair outside of the home. We went abroad just before Xmas and whilst I was sunbathing he was in thermals so I took him to the Dr when
My husband suffers with osteoporosis and osteoarthritis and this has got worse over the last 3 years such that he has had 2 spinal operations and now uses a manual wheelchair outside of the home. We went abroad just before Xmas and whilst I was sunbathing he was in thermals so I took him to the Dr when
Peep3
in
Vasculitis UK
5 years ago
Strokes Again!! Update on mine and cerebral vasculitis.
I was told I was not a candidate, as have normal BP and low cholesterol ,so after much head scratching the Neuro and Rheumy and cardiologist are now saying
cerebral
vasculitis
.
I was told I was not a candidate, as have normal BP and low cholesterol ,so after much head scratching the Neuro and Rheumy and cardiologist are now saying
cerebral
vasculitis
.
cuttysark
in
LUPUS UK
6 years ago
False High ANCA?!
About 18 months ago I had terrible flu like experience with extreme confusion and blood tests 6 weeks later showed high ANCA p type and has been slightly elevated on a few occasions since. Since then I’ve been having issues with sudden breathlessness, chronic chest pain with cough, and black hands. All
About 18 months ago I had terrible flu like experience with extreme confusion and blood tests 6 weeks later showed high ANCA p type and has been slightly elevated on a few occasions since. Since then I’ve been having issues with sudden breathlessness, chronic chest pain with cough, and black hands. All
LeanneN
in
Vasculitis UK
5 years ago
Can rise of P Anca predict relapse in vasculitis?
Please write if you have same experience with relapse of vaaculitis.Did you have any signs before relapse?Rise of ANCA,clinical evidence,biochemistry,Your observation of changes in Your body condition,blood preassure.
Please write if you have same experience with relapse of vaaculitis.Did you have any signs before relapse?Rise of ANCA,clinical evidence,biochemistry,Your observation of changes in Your body condition,blood preassure.
tamidi
in
Vasculitis UK
5 years ago
Vasculitis in legs
Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!! I was sat in the sun today and my legs became even more red, is this normal ( not sunburn) Also I have been getting a small amount of fluid on my shin, my ankles hurt when I'm walking and the
Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!! I was sat in the sun today and my legs became even more red, is this normal ( not sunburn) Also I have been getting a small amount of fluid on my shin, my ankles hurt when I'm walking and the
2stents
in
Vasculitis UK
5 years ago
Trying another tiny steroid drop soon
That is not normal for
vasculitis
patients, but my
cerebral
vasculitis
disease fights back badly at each drop. But I persevere. Excited to try anyway! I've been on daily steroids for 21 years now, to keep me alive, and particularly high doses long-term since my huge disease relapse in 2004.
That is not normal for
vasculitis
patients, but my
cerebral
vasculitis
disease fights back badly at each drop. But I persevere. Excited to try anyway! I've been on daily steroids for 21 years now, to keep me alive, and particularly high doses long-term since my huge disease relapse in 2004.
vivdunstan
Volunteer
in
Vasculitis UK
6 years ago
Question about nausea and Vasculitis
Hey everyone! so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. He seems to be nauseous A LOT of the time and says he ends up actually throwing up sometimes. He’s had many different kinds of medications so far to see if perhaps the nausea can
Hey everyone! so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. He seems to be nauseous A LOT of the time and says he ends up actually throwing up sometimes. He’s had many different kinds of medications so far to see if perhaps the nausea can
sweettea5
in
Vasculitis UK
5 years ago
Waiting on a diagnosis... Looking for advice please
I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for a bunch of different things. Basically this all started last week when I went to the optometrist and found out I have a hemorrhage in my left eye near my blind
I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for a bunch of different things. Basically this all started last week when I went to the optometrist and found out I have a hemorrhage in my left eye near my blind
bobadee
in
Vasculitis UK
5 years ago
Any thoughts on Rituximab
Hi My husband who has MCTD for 20 years ( recently diagnosed with discoid lupus) has been offered rituximab. At the time it was offered , he had been recovering from acute liver failure ( hospital says cause unknown), this had limited the choice of medication he was offered. Last week we were told that
Hi My husband who has MCTD for 20 years ( recently diagnosed with discoid lupus) has been offered rituximab. At the time it was offered , he had been recovering from acute liver failure ( hospital says cause unknown), this had limited the choice of medication he was offered. Last week we were told that
Pop007
in
LUPUS UK
6 years ago
My story ... journey to a diagnosis
My problems start in January 2008 following the birth of my first child. Over the next 10 years I suffered from pain in joints, pins and needles in my feet and hands and a skin infection every 6 - 9 months. Each time the GP would give me various diagnoses and prescribe me something to get me through
My problems start in January 2008 following the birth of my first child. Over the next 10 years I suffered from pain in joints, pins and needles in my feet and hands and a skin infection every 6 - 9 months. Each time the GP would give me various diagnoses and prescribe me something to get me through
356bubbles
in
Vasculitis UK
6 years ago
Diagnosed with GPA over 2 yrs ago.
Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis. Changed to azathioprine after 8 months and am now medication free. It's a struggle with the usual aches and pains, mainly in the knee joints but I still walk the dog daily for approx. 1 hr per day
Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis. Changed to azathioprine after 8 months and am now medication free. It's a struggle with the usual aches and pains, mainly in the knee joints but I still walk the dog daily for approx. 1 hr per day
Noza456
in
Vasculitis UK
6 years ago
Infusion
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Cool_blue
in
Behçet's UK
6 years ago
Getting a diagnosis
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Milo00
in
Vasculitis UK
6 years ago
1st dose of Rituximab
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Hidden
in
LUPUS UK
6 years ago
cyclophosphamide infusion - side effects / experiences ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hika
in
LUPUS UK
6 years ago
Confused!
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
shanahamza
in
Vasculitis UK
6 years ago
Advice please
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Georgie-girl
in
Vasculitis UK
6 years ago
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