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Experiences with
Urticarial vasculitis
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A Thank You
A great thanks for all the support from you when I asked my question about often feeling with this disease medical professionals sometimes dont believe your symptoms. I got proof of this today when I went for a routine blood test. My practice nurse told me that the neurologist I had seen had written
A great thanks for all the support from you when I asked my question about often feeling with this disease medical professionals sometimes dont believe your symptoms. I got proof of this today when I went for a routine blood test. My practice nurse told me that the neurologist I had seen had written
Jazzy21
in
Behçet's UK
12 years ago
Anybody with urticarial vasculitis help answer a few questions :)
My son who is 9 has
urticarial
vasculitis
only diagnosed last year after biopsy and still waiting the results of specialist bloods taken weeks ago, I wanted to ask if anybody with uv suffers from stomach pain and headaches, he is more frequently seems to complain of a soar tummy and soar head feels unwell
My son who is 9 has
urticarial
vasculitis
only diagnosed last year after biopsy and still waiting the results of specialist bloods taken weeks ago, I wanted to ask if anybody with uv suffers from stomach pain and headaches, he is more frequently seems to complain of a soar tummy and soar head feels unwell
Betty4
in
Vasculitis UK
12 years ago
LDN
Has anyone with
urticarial
vasculitis
tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest unbiased opinion.
Has anyone with
urticarial
vasculitis
tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest unbiased opinion.
jackrussell
in
Vasculitis UK
12 years ago
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Depressed After Losing Peripheral Vision Loss
I am feeling so low after 10 days and no ideas as to why i have lost my peripheral vision and my normal vision is reduced. All MRIs, CT scans and angiograms proved to be normal. I am now trying to get to see my rheumy to ask what is happening to me. My question is this how do you stay positive with
I am feeling so low after 10 days and no ideas as to why i have lost my peripheral vision and my normal vision is reduced. All MRIs, CT scans and angiograms proved to be normal. I am now trying to get to see my rheumy to ask what is happening to me. My question is this how do you stay positive with
Jazzy21
in
Behçet's UK
12 years ago
Any Benefits available while diagnosed with Anca Vasculitis
I have been diagnosed with Anca vasculitis since last Christmas,had chemo, prednisalone etc... cant seem to get any benefits, been unable to work, but my wife works 20 hours a week, she is now suffering with ill health & still trying to work, because of this it seems we cant get any benefits & our savings
I have been diagnosed with Anca vasculitis since last Christmas,had chemo, prednisalone etc... cant seem to get any benefits, been unable to work, but my wife works 20 hours a week, she is now suffering with ill health & still trying to work, because of this it seems we cant get any benefits & our savings
longbank123
in
Vasculitis UK
12 years ago
Can you tell me your experiences of small/medium cell vasculitis?please
My daughter has been told today that she appears to have vasculitis,which has damaged her heart valves,skin,had affected her vision,severe fatigue and much much more.she is on lots of meds for supposed systemic lupus,so she feels much better than she has done for a few years.she was told today it isn't
My daughter has been told today that she appears to have vasculitis,which has damaged her heart valves,skin,had affected her vision,severe fatigue and much much more.she is on lots of meds for supposed systemic lupus,so she feels much better than she has done for a few years.she was told today it isn't
nanny4
in
Vasculitis UK
12 years ago
Daughter diagnosed with Wegeners Granulamotosis
My 14 year old daughter was diagnosed with Wegeners in January of this year after being hospitalized with what was first diagnosed as pneumonia. She went into renal failure and was on a ventilator for 2 weeks before she started responding to medications. She is doing fairly well right now and is finishing
My 14 year old daughter was diagnosed with Wegeners in January of this year after being hospitalized with what was first diagnosed as pneumonia. She went into renal failure and was on a ventilator for 2 weeks before she started responding to medications. She is doing fairly well right now and is finishing
runtim
in
Vasculitis UK
12 years ago
Do many people suffer with food allergy with Vasculitis?
Hi all, just wondered if any of you suffer with food allergy/anaphalaxis? My daughter is at the moment going through the is it or isn't stage of diagnosis,she has in the last year had a few episodes of anaphalaxis, due to what she though was food related, but she can't be sure, when she saw a renal
Hi all, just wondered if any of you suffer with food allergy/anaphalaxis? My daughter is at the moment going through the is it or isn't stage of diagnosis,she has in the last year had a few episodes of anaphalaxis, due to what she though was food related, but she can't be sure, when she saw a renal
nanny4
in
Vasculitis UK
12 years ago
Do you feel better after completing cyclophosphide treatment?
Hello - does everyone feel better when they have completed their cyclophosphamide treatment? I finished mine two weeks ago and dont feel any better than I did before I started. Before starting the treatment I was on hydroxychloriquine and the weakness in my legs had gone. This has come back since
Hello - does everyone feel better when they have completed their cyclophosphamide treatment? I finished mine two weeks ago and dont feel any better than I did before I started. Before starting the treatment I was on hydroxychloriquine and the weakness in my legs had gone. This has come back since
Mooka
in
Vasculitis UK
12 years ago
The Southern General Fiasco!
After CT scans, MRI scans, Angiograms the lot, I was told today that I am imagining my peripheral vision loss, vision loss, and that my memory loss is due to my pain levels. Finally my balance is off because I am over weight. He spoke to me sitting on my bed with 4 of his underlings around my bed all
After CT scans, MRI scans, Angiograms the lot, I was told today that I am imagining my peripheral vision loss, vision loss, and that my memory loss is due to my pain levels. Finally my balance is off because I am over weight. He spoke to me sitting on my bed with 4 of his underlings around my bed all
Jazzy21
in
Behçet's UK
12 years ago
In Southern Generals still? Peripheral vision loss
Still in hospital still have peripheral vision loss and soon other symptoms low vision balance problem memory loss. MRI clear lots of scratching out heads. Any advice wisdom.
Still in hospital still have peripheral vision loss and soon other symptoms low vision balance problem memory loss. MRI clear lots of scratching out heads. Any advice wisdom.
Jazzy21
in
Behçet's UK
12 years ago
Hia, I'm new to site and Behcet's. Been reading blogs. As it's been helpful I'm venturing a question! Anyone taken CellCept (Mycophenolate)?
I've been taking for months now but it doesn't feel like it's making a difference. Consultant says to give it time, but not giving an indication of how long. I was diagnosed in Sep 2011 and steroids made a quick improvement. I then went on azathioprine and was able to reduce steroids. I really felt a
I've been taking for months now but it doesn't feel like it's making a difference. Consultant says to give it time, but not giving an indication of how long. I was diagnosed in Sep 2011 and steroids made a quick improvement. I then went on azathioprine and was able to reduce steroids. I really felt a
Godles
in
Behçet's UK
12 years ago
Some Good News at Last!
I attended my appointment yesterday with My Rheum Consultant and after he increased my CellCept or MMF wef 17th May, ( I am now on 2000mg per day), my Lupus levels and immune system is now back in the black. In laymans terms they are keeping the Lupus and it's actions at bay from doing any serious damage
I attended my appointment yesterday with My Rheum Consultant and after he increased my CellCept or MMF wef 17th May, ( I am now on 2000mg per day), my Lupus levels and immune system is now back in the black. In laymans terms they are keeping the Lupus and it's actions at bay from doing any serious damage
Lulabelle
in
LUPUS UK
12 years ago
Lower Intestinal Bleed
Had a lower intestinal bleed Sunday; as a consequence now back in hospital on copious amounts of morphine and gabapentin while they figure if my PAN is responsible for the ulcerative colitis symptoms I currently have. Neutrophil levels are ok... It's a big setback, as I'm in my local hospital which
Had a lower intestinal bleed Sunday; as a consequence now back in hospital on copious amounts of morphine and gabapentin while they figure if my PAN is responsible for the ulcerative colitis symptoms I currently have. Neutrophil levels are ok... It's a big setback, as I'm in my local hospital which
Wellsie
in
Vasculitis UK
12 years ago
Anxious about Rituximab
My first Rituximab is scheduled for 8th August. In clinic my consultant was busy so did not have time to ask questions and GP cannot answer either as she has no experience of it. Could anyone with experience tell me: on the day of the infusion should I take usual meds (Pred, Azathiorpine, BP tablet
My first Rituximab is scheduled for 8th August. In clinic my consultant was busy so did not have time to ask questions and GP cannot answer either as she has no experience of it. Could anyone with experience tell me: on the day of the infusion should I take usual meds (Pred, Azathiorpine, BP tablet
assumpta
in
Vasculitis UK
12 years ago
Wegeners
Hi i was very ill 4 years ago but recovered after being on a high dose of pred after about 8 months, at that time no-one could be sure if it had been Wegeners, i would say i was then 70% back to feeling my normal self. then 3 weeks ago i had another flare up this time its positive Wegeners Gran, im now
Hi i was very ill 4 years ago but recovered after being on a high dose of pred after about 8 months, at that time no-one could be sure if it had been Wegeners, i would say i was then 70% back to feeling my normal self. then 3 weeks ago i had another flare up this time its positive Wegeners Gran, im now
prudence
in
Vasculitis UK
12 years ago
Dad diagnosed with Wegener's Granulomatosis
Some 20 days ago my father was diagnosed with Wegener's, but no kidneys affected, at least not yet. We are Greek, living in Greece and first time even heard of the disease. It is too rare in Greece. Now on therapy with prednisone (50mg per day and cutting down 5 mg every week) and a monthly dose of cyclophosphamide
Some 20 days ago my father was diagnosed with Wegener's, but no kidneys affected, at least not yet. We are Greek, living in Greece and first time even heard of the disease. It is too rare in Greece. Now on therapy with prednisone (50mg per day and cutting down 5 mg every week) and a monthly dose of cyclophosphamide
zmajevi
in
Vasculitis UK
12 years ago
Hi I'm new here and my son has been diagnosed with urticarial vasculitis, I just wondered if anybody else has a child with it thanks
Betty4
in
Vasculitis UK
12 years ago
What's the difference between HUV and HUVS ?
I'm not sure if anyone else on here is diagnosed with Hypocomplementemic
Urticarial
Vasculitis
but having just discovered this link : http://www.flashcardmachine.com/jjsa-vasculitis.html I see that there's a distinction between HUV and HUV Syndrome so I wondered if anyone else knew this or had any more
I'm not sure if anyone else on here is diagnosed with Hypocomplementemic
Urticarial
Vasculitis
but having just discovered this link : http://www.flashcardmachine.com/jjsa-vasculitis.html I see that there's a distinction between HUV and HUV Syndrome so I wondered if anyone else knew this or had any more
RichardE
Volunteer
in
Vasculitis UK
12 years ago
How high is high with an ANCA result?
i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results. At worst, during a bad flare, my P ANCA was at 45 (1 year ago), at best 5 (6 weeks ago) when my consultant said I was ANCA negative and I was feeling great. Now it is 22 with no
i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results. At worst, during a bad flare, my P ANCA was at 45 (1 year ago), at best 5 (6 weeks ago) when my consultant said I was ANCA negative and I was feeling great. Now it is 22 with no
Ayla
Volunteer
in
Vasculitis UK
12 years ago
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