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Cerebral vasculitis
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Ongoing Treatment
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Wellsie
in
Vasculitis UK
11 years ago
What next - Cerebral Vasculitis
Just an update on my dad (previous post of 71 and just diagnosed with possible
cerebral
vasculitis
) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks.
Just an update on my dad (previous post of 71 and just diagnosed with possible
cerebral
vasculitis
) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks.
SteveJarvis
in
Vasculitis UK
11 years ago
My Father of 71 just been advised he may have cerebral vasculitis. Shell shocked and unsure what to expect
Finally saw Dr Lloyd yesterday, who said it was possible
Cerebral
Vasculitis
and he should be in Kings.. At last some action and sense of urgency. But family distraught and yet to understand prognosis, outcomes and potential impact ..good or bad... If this condition isn't curable...
Finally saw Dr Lloyd yesterday, who said it was possible
Cerebral
Vasculitis
and he should be in Kings.. At last some action and sense of urgency. But family distraught and yet to understand prognosis, outcomes and potential impact ..good or bad... If this condition isn't curable...
SteveJarvis
in
Vasculitis UK
11 years ago
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Cerebral vasculitis
Virtually every area of my body has some symptom and every year i get more Inclu: Rashes , itchy areas of my skin that sometimes drive me to disspear Various areas of stabbing pain, headaches confusion, back pain etc.... could go on for about two a4 pages Anyway if i have had a primary
cerebral
vasculitis
Virtually every area of my body has some symptom and every year i get more Inclu: Rashes , itchy areas of my skin that sometimes drive me to disspear Various areas of stabbing pain, headaches confusion, back pain etc.... could go on for about two a4 pages Anyway if i have had a primary
cerebral
vasculitis
zeusthegreat
in
Vasculitis UK
11 years ago
negative results for inflammation on blood tests
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
braincurdle
in
Vasculitis UK
11 years ago
"Together we are stronger" Please consider becoming a member of Vasculitis UK
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Recently diagnosed with Leukocytoclastic vasculitis via skin biopsy had 1st meeting with dermatologist who has now taken bloods to see if i
am ANCA positive or negative, then will use those results to determine any treatment i might have, also commented my R factor was raised from other bloods, am i right in thinking if it's positive it means i have something else going on too & if negative it's just skin affected?
am ANCA positive or negative, then will use those results to determine any treatment i might have, also commented my R factor was raised from other bloods, am i right in thinking if it's positive it means i have something else going on too & if negative it's just skin affected?
nesbitt
in
Vasculitis UK
11 years ago
Coffee and Cake Morning and a Raffle for Vasculitis UK The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle
The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle to be drawn before Christmas. It is also a chance to win a Winston the Vasculitis bear. They are also holding a Coffee and Cake Morning on the 13th December and all proceeds will be added to the raffle total. All proceeds
The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle to be drawn before Christmas. It is also a chance to win a Winston the Vasculitis bear. They are also holding a Coffee and Cake Morning on the 13th December and all proceeds will be added to the raffle total. All proceeds
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
Does anybody follow a healthy eating plan or know of diets which can help this condition. I have been diagnosed and being treated for WG.
I am taking 75mg of prednisone daily and have had my first cyclophosphamide a week ago. I have noticed some foods are not so appetising any more and wondered if there is a tried and tested diet. I have no allergies or diet requirements. Thanks.
I am taking 75mg of prednisone daily and have had my first cyclophosphamide a week ago. I have noticed some foods are not so appetising any more and wondered if there is a tried and tested diet. I have no allergies or diet requirements. Thanks.
Hidden
in
Vasculitis UK
11 years ago
Kidneys leaking protein
My daughter was diagnosed with wegeners granulomatosis in August has just 5 out of to be 9 doses of cyclophosphamide along with steroids. Her kidneys are leaking protein due to the damage done to them from disease - docs have prescribed ramipril to reduce leak of protein to urine. Can somebody help
My daughter was diagnosed with wegeners granulomatosis in August has just 5 out of to be 9 doses of cyclophosphamide along with steroids. Her kidneys are leaking protein due to the damage done to them from disease - docs have prescribed ramipril to reduce leak of protein to urine. Can somebody help
Bailey24
in
Vasculitis UK
11 years ago
Returning symptoms
My initial dx was GCA. The it was unspecified vasculitis, then it was more likely a lupus/ vasculitis overlap. Last was it is autoimmune but don't know what! So they took me off Methotrixate to see who I faired. My eyes sight is worse and had this confirmed with eye test, my temple pain along with jaw
My initial dx was GCA. The it was unspecified vasculitis, then it was more likely a lupus/ vasculitis overlap. Last was it is autoimmune but don't know what! So they took me off Methotrixate to see who I faired. My eyes sight is worse and had this confirmed with eye test, my temple pain along with jaw
CathT
in
Vasculitis UK
11 years ago
Back on MMF 500 mg
After my 8th relapse of Wegeners, my Doctor put me on Ristova again for 6th time, 500 mg, four infusions. And with that he started MMF 500, initially twice daily. When from 1st Nov 2013 he started four daily, I was in terribly state. So he asked me to stop. Later from last five days he asked me to take
After my 8th relapse of Wegeners, my Doctor put me on Ristova again for 6th time, 500 mg, four infusions. And with that he started MMF 500, initially twice daily. When from 1st Nov 2013 he started four daily, I was in terribly state. So he asked me to stop. Later from last five days he asked me to take
amita_valmiki
in
LUPUS UK
11 years ago
Flares & Relapses
Do flares. & relapses almost always occur? My 13 year old daughter has wegeners granulomatosis - diagnosed august this year. Does anybody out there have WG & not suffered either - I worry so much for the future & would love some reassurance.
Do flares. & relapses almost always occur? My 13 year old daughter has wegeners granulomatosis - diagnosed august this year. Does anybody out there have WG & not suffered either - I worry so much for the future & would love some reassurance.
Bailey24
in
Vasculitis UK
11 years ago
More cyclops
Mixed news today from my visit to the hospital. Positive news: signs are good for my recovery. Nerve damage has now bottomed out and she is hopeful. Bloods and urine all good. Now to keep the PAN at bay I have been told I will have to face 6 months more of chemotherapy. Because I am "off plan" for Rituximab
Mixed news today from my visit to the hospital. Positive news: signs are good for my recovery. Nerve damage has now bottomed out and she is hopeful. Bloods and urine all good. Now to keep the PAN at bay I have been told I will have to face 6 months more of chemotherapy. Because I am "off plan" for Rituximab
Wellsie
in
Vasculitis UK
11 years ago
What diet changes could you suggest, I have Vasculitis SLE
I was diagnosed with Vasculitis SLE in July of this year, and I was put on Cyclophosphamine and I am presently taking 100 mg with Dapsone. I began Prednisone at 60 mg and I am presently down to 25 mg, I have changed my diet, eliminated most sugars and processed foods. My Rheumy didn't think I needed
I was diagnosed with Vasculitis SLE in July of this year, and I was put on Cyclophosphamine and I am presently taking 100 mg with Dapsone. I began Prednisone at 60 mg and I am presently down to 25 mg, I have changed my diet, eliminated most sugars and processed foods. My Rheumy didn't think I needed
tonympb
in
Vasculitis UK
11 years ago
Russ Runs the Stevenage Half Marathon for Vasculitis UK
On 3rd November, Russ Wingfield will proudly wear his Vasculitis UK t-shirt as he takes part in the Stevenage Half Marathon. Russ will be raising awareness of vasculitis and funds for Vasculitis UK because his Dad was diagnosed with Churg Strauss Syndrome earlier this year. http://www.vasculitis.org.uk
On 3rd November, Russ Wingfield will proudly wear his Vasculitis UK t-shirt as he takes part in the Stevenage Half Marathon. Russ will be raising awareness of vasculitis and funds for Vasculitis UK because his Dad was diagnosed with Churg Strauss Syndrome earlier this year. http://www.vasculitis.org.uk
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
My husband has small round white patches on his hands and also some pink patches - is this anything to do with his WG?
I have looked at images of vasculitis on the internet and it doesnt really resemble his hands. They are definitely white and round. Not blistered. Have never seen anything like it. He is reluctant to ring his specialist and believes it is nothing to do with his WG but I am not so sure. I worry if
I have looked at images of vasculitis on the internet and it doesnt really resemble his hands. They are definitely white and round. Not blistered. Have never seen anything like it. He is reluctant to ring his specialist and believes it is nothing to do with his WG but I am not so sure. I worry if
maira
in
Vasculitis UK
11 years ago
Can anyone explain to me about Vasculitis.
I have to go for a blood test this week for an Anca test. Legs have come up in big red splodges. My rheumy consultant took one look at my legs and said I had to go for this test, no explanation what Vasculitis is so would be grateful for some help please !!! Xxx
I have to go for a blood test this week for an Anca test. Legs have come up in big red splodges. My rheumy consultant took one look at my legs and said I had to go for this test, no explanation what Vasculitis is so would be grateful for some help please !!! Xxx
Poppymichael7
in
Vasculitis UK
11 years ago
Returning to school
My daughter is being treated for wegeners & has so far had 2 treatments of cyclophosphamide. Her rheumatology nurse is talking of returning to school before October half term break all be it for a couple of short days but I am already worried about risk of infection. Is this to soon ?
My daughter is being treated for wegeners & has so far had 2 treatments of cyclophosphamide. Her rheumatology nurse is talking of returning to school before October half term break all be it for a couple of short days but I am already worried about risk of infection. Is this to soon ?
Bailey24
in
Vasculitis UK
11 years ago
Do I have it or not? This is the question.
Been searching this site and found tons of help. One on line person led me to john Hopkins site and this was interesting. I hope I am being proactive and not reacting out of fear. Elevated ANCA score, with symptoms that could be vasculitis or old age! When do you stop searching for an answer? This is
Been searching this site and found tons of help. One on line person led me to john Hopkins site and this was interesting. I hope I am being proactive and not reacting out of fear. Elevated ANCA score, with symptoms that could be vasculitis or old age! When do you stop searching for an answer? This is
dskizs
in
Vasculitis UK
11 years ago
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