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Experiences with
Urticarial vasculitis
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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
Cerebral vasculitis
The experts think i have this as i have lesions on my brain, but they have done MRI recently and no new damage but i still have lots of neurological symptoms. they have done bloods but they cannot find inflammation at the moment. Virtually every area of my body has some symptom and every year i get
The experts think i have this as i have lesions on my brain, but they have done MRI recently and no new damage but i still have lots of neurological symptoms. they have done bloods but they cannot find inflammation at the moment. Virtually every area of my body has some symptom and every year i get
zeusthegreat
in
Vasculitis UK
11 years ago
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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
Northamptonshire Telegraph yesterday 'A group of friends have pulled together to make a bakery recipe book in memory of their friend'
The group produced the book after they were inspired by their friend Debbie Gregson’s love of home baking. Mrs Gregson died in January, aged 49, after suffering from vasculitis. The group, who all met through their children being friends, are based in Earls Barton, Great Doddington and Wilby, and have
The group produced the book after they were inspired by their friend Debbie Gregson’s love of home baking. Mrs Gregson died in January, aged 49, after suffering from vasculitis. The group, who all met through their children being friends, are based in Earls Barton, Great Doddington and Wilby, and have
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
I am very confused I was diagnosed with vasculitis about 3 years ago after many tests and a nerve and muscle biopsy.
Since then I have been treated for vasculitis. Recently however I was confused as I had a really bad episode where my lower leg and foot went completely numb I saw a dr who sent me to hospital to get this checked I had bloods done and this was sent to my consultant who stated in a letter he is unsure
Since then I have been treated for vasculitis. Recently however I was confused as I had a really bad episode where my lower leg and foot went completely numb I saw a dr who sent me to hospital to get this checked I had bloods done and this was sent to my consultant who stated in a letter he is unsure
Amanda51
in
Vasculitis UK
11 years ago
Another day another dollar
Another day, another dollar. Eh? Today's bonus was an end to end EMG and NVC test in neurophysiology. Good news: no new neuropathy I don't know about already; but lots of weakness in legs is confirmed. Then down to rheumatology for big dose of methyl pred and cyclophosphamide. So now it's 1:30 am and
Another day, another dollar. Eh? Today's bonus was an end to end EMG and NVC test in neurophysiology. Good news: no new neuropathy I don't know about already; but lots of weakness in legs is confirmed. Then down to rheumatology for big dose of methyl pred and cyclophosphamide. So now it's 1:30 am and
Wellsie
in
Vasculitis UK
11 years ago
Can anybody simplify the anca test. ?
My daughter had bloods done today - some of which are for Anca test. - the results will not be available until tomorrow - she had already been confirmed as having wegeners disease & is receiving treatment for this Can anybody explain what the anca test is for in simple terms ?! I am a bit confuse by
My daughter had bloods done today - some of which are for Anca test. - the results will not be available until tomorrow - she had already been confirmed as having wegeners disease & is receiving treatment for this Can anybody explain what the anca test is for in simple terms ?! I am a bit confuse by
Bailey24
in
Vasculitis UK
11 years ago
Sickness following cyclophosphamide
My daughter has just finished her 2nd dose of cyclophos & now 3 days later has been sick & feeling nauseous - is this common ? Anybody else experience this ?
My daughter has just finished her 2nd dose of cyclophos & now 3 days later has been sick & feeling nauseous - is this common ? Anybody else experience this ?
Bailey24
in
Vasculitis UK
11 years ago
Dermatologists and vasculitis
The Dermatologists at the hospital I attend have told me that - although a skin biopsy shows I have vasculitis - I don't have vasculitis. I am confused. They had told me I had lymphocytic vasculitis - but now it's not... I'm seeing a rheumatologist at the end of next month thank goodness, because -
The Dermatologists at the hospital I attend have told me that - although a skin biopsy shows I have vasculitis - I don't have vasculitis. I am confused. They had told me I had lymphocytic vasculitis - but now it's not... I'm seeing a rheumatologist at the end of next month thank goodness, because -
ouscribe
in
Vasculitis UK
11 years ago
Could someone explain what is involved with kidney and Skin biopsy. also red spot update.
Well I saw the vasculitis team last week. The red small spots are vascular so I have to see a dermatologist who will do a biopsy on some. Anyone had this and what do they do, how much do they take? Also having a kidney biopsy can anyone explain what this is and how it is done like? They told me that
Well I saw the vasculitis team last week. The red small spots are vascular so I have to see a dermatologist who will do a biopsy on some. Anyone had this and what do they do, how much do they take? Also having a kidney biopsy can anyone explain what this is and how it is done like? They told me that
CathT
in
Vasculitis UK
11 years ago
Azathioprine, and nausea
Hi have had ten pulses of cyclophosphamide and have now started on azathioprine building up to 150mgs daily. Alls good except really bad feeling of nausea and a distinct lack of appetite. Trying to battle through it, but do you. Can anyone give me any positives that this feeling will pass and it will
Hi have had ten pulses of cyclophosphamide and have now started on azathioprine building up to 150mgs daily. Alls good except really bad feeling of nausea and a distinct lack of appetite. Trying to battle through it, but do you. Can anyone give me any positives that this feeling will pass and it will
cambs13
in
Vasculitis UK
11 years ago
Getting on my bloody nerves (literally)
Went to see the physio today; was told I have very weak legs and hips, and was shown today practically how bad it is getting. No more denial, it's not good. Given that it was only 10 weeks or so ago that I walked 31 miles in a day, is it possible that such rapid weakening is being caused by axonal motor
Went to see the physio today; was told I have very weak legs and hips, and was shown today practically how bad it is getting. No more denial, it's not good. Given that it was only 10 weeks or so ago that I walked 31 miles in a day, is it possible that such rapid weakening is being caused by axonal motor
Wellsie
in
Vasculitis UK
11 years ago
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