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Experiences with
Urticarial vasculitis
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has anyone had a nerve biopsy.I was diagnosed with Leukocytoclastic vasculitis in 2011 from a skin biopsy,as it is mainly a skin vasculitis
I have suffered ever since with severe pain in both my legs. I was sent to have a nerve conduction test and was told the nerves in my legs were damaged from the vasculitis.and I should have had a nerve biopsy at the same time I had the skin biopsy.Although I have had no lesions on my legs for 12 months
I have suffered ever since with severe pain in both my legs. I was sent to have a nerve conduction test and was told the nerves in my legs were damaged from the vasculitis.and I should have had a nerve biopsy at the same time I had the skin biopsy.Although I have had no lesions on my legs for 12 months
Maddy43
in
Vasculitis UK
11 years ago
I have been to see my specialist about my hearing. Last October I completely lost my hearing in my left ear
I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since lost my hearing again in my left ear and been told once again I would have to pay out privately. This I can not afford to do, so I am going to
I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since lost my hearing again in my left ear and been told once again I would have to pay out privately. This I can not afford to do, so I am going to
valwood
in
Vasculitis UK
11 years ago
I have giant cell vasculitis ..on steroids and cyclo for 6 treatments one more to go - anyone suffer dizzyness blurred vision or cramp?
shella
in
Vasculitis UK
11 years ago
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Flare treatment
So after just a 6 month break, and a quick walk across Worcestershire in good company it was back to treatment again today. Chemo session 1 (or 13, depending on how you look at it) done and dusted. Still not enjoying the feeling of speeding from 1g of methyl pred mixed with the yack from the 1g of
So after just a 6 month break, and a quick walk across Worcestershire in good company it was back to treatment again today. Chemo session 1 (or 13, depending on how you look at it) done and dusted. Still not enjoying the feeling of speeding from 1g of methyl pred mixed with the yack from the 1g of
Wellsie
in
Vasculitis UK
11 years ago
has anyone else got large vessel vasculitis , I was told this week I have this .my problem started 12 months ago with cramps and twitching,
pretty much all over my body .I was sent to a nuro who said I had isaacs syndrome .after a long battle with the medical team I was given a chest ct scan to check for tumors as I had a horrid pain in chest , on the scan it showed my large vessel plus some others had large vessel vasculitis . they say
pretty much all over my body .I was sent to a nuro who said I had isaacs syndrome .after a long battle with the medical team I was given a chest ct scan to check for tumors as I had a horrid pain in chest , on the scan it showed my large vessel plus some others had large vessel vasculitis . they say
lisaains
in
Vasculitis UK
11 years ago
Lupus Information Day
Vasculitis UK are delighted to have been invited along to a Lupus Information Day to be held by the East Anglian branch of Lupus UK on Saturday the 12th of October in Hinxton near Cambridge. As you may know, Lupus is an autoimmune disease that has many similarities to Vasculitis. In fact some Lupus
Vasculitis UK are delighted to have been invited along to a Lupus Information Day to be held by the East Anglian branch of Lupus UK on Saturday the 12th of October in Hinxton near Cambridge. As you may know, Lupus is an autoimmune disease that has many similarities to Vasculitis. In fact some Lupus
RichardE
Volunteer
in
Vasculitis UK
11 years ago
Can positive c anca be caused by cholestorol?
The rheumatologist i saw said perhaps my c anca positive could be high cholestorol...mine is 5.6... And that some people just happen to be positive for no good reason. My sinuses were probably the clearest and more pain free than in months with no bleeding in the two days prior...which is typical after
The rheumatologist i saw said perhaps my c anca positive could be high cholestorol...mine is 5.6... And that some people just happen to be positive for no good reason. My sinuses were probably the clearest and more pain free than in months with no bleeding in the two days prior...which is typical after
Tinkytink
in
Vasculitis UK
11 years ago
HUVS
If you have Hypocomplementemic
Urticarial
Vasculitis
Syndrome and you have tried many medications Methatrexate IM and/or PO, immurane, cytoxin, cellcept, Plaquinel, Dapsone without favorable results. Ask your doctor to try Rituxan.
If you have Hypocomplementemic
Urticarial
Vasculitis
Syndrome and you have tried many medications Methatrexate IM and/or PO, immurane, cytoxin, cellcept, Plaquinel, Dapsone without favorable results. Ask your doctor to try Rituxan.
Texas195260
in
Vasculitis UK
11 years ago
Worcs Way - Mission accomplished
After over 200 miles of training walks, many of which involved carry 28 pounds of weights in a rucksack (building up the legs for those hills), the big day finally arrived. Twelve of us set off from Bewdley at 05:50 am hoping to complete the 31 miles and 1560 metres of ascent over the Worcestershire
After over 200 miles of training walks, many of which involved carry 28 pounds of weights in a rucksack (building up the legs for those hills), the big day finally arrived. Twelve of us set off from Bewdley at 05:50 am hoping to complete the 31 miles and 1560 metres of ascent over the Worcestershire
Chris-Bromsgrove
in
Vasculitis UK
11 years ago
Kidney biopsy. l am having a kidney biopsy on the 10th July to get a definite diagnosis of what my consultant believes to be WG. ,,
I am a little nervous and wondered if anyone could Iet me know what it's actually like. This has all happened rather fast for me, 3 weeks ago I hadn't even heard of Vasculitis. Thanks x
I am a little nervous and wondered if anyone could Iet me know what it's actually like. This has all happened rather fast for me, 3 weeks ago I hadn't even heard of Vasculitis. Thanks x
skot
in
Vasculitis UK
11 years ago
First ever post...I have a positive c-anca...is it possible that i have no illness at all?
been unwell for 18 months, sinuses, throat, asthma type symptoms, fatigue...my ENT did a c anca test and it came back positive but didn't let me know till next routine Appt 7 months later.There seems to be no sense of urgency about follow up depsite the fact that i have been to docs a few times this
been unwell for 18 months, sinuses, throat, asthma type symptoms, fatigue...my ENT did a c anca test and it came back positive but didn't let me know till next routine Appt 7 months later.There seems to be no sense of urgency about follow up depsite the fact that i have been to docs a few times this
Tinkytink
in
Vasculitis UK
11 years ago
DILEMMA
I have a very dear friend who is very poorly in hospital with necrossa pancreaitis. I am a WG patient in remission, on 10mg prednisolone and azathioprine, so immunosuppressed. My dilemma is do I go to hsp to visit my very close friend (she isn't alone, she has family ) and therefore put myself at risk
I have a very dear friend who is very poorly in hospital with necrossa pancreaitis. I am a WG patient in remission, on 10mg prednisolone and azathioprine, so immunosuppressed. My dilemma is do I go to hsp to visit my very close friend (she isn't alone, she has family ) and therefore put myself at risk
fillyhome
in
Vasculitis UK
11 years ago
Apprehensive about Rituximab
Well I'm now on course to get Rituximab, since Azathioprine didn't suit me. Just waiting for a date for my first infusion. However, I'm a bit apprehensive in view of the mixed reactions to it. Hope it works for me!
Well I'm now on course to get Rituximab, since Azathioprine didn't suit me. Just waiting for a date for my first infusion. However, I'm a bit apprehensive in view of the mixed reactions to it. Hope it works for me!
suffolkgirl
in
Vasculitis UK
11 years ago
Small World.. you never know who is on your doorstep and has been diagnosed with Vasculitis.
After attending a fundraising event today for a local Children's Hospital, I have realised that, now, in a 14 mile radius of my home, I know, 6 people with Wegeners Granulomatosis (GPA) aged 14, 24, 32, 65, 70 and 75, plus a little girl of 4 and a young man of nearly 20 who both have Henoch Schonlein
After attending a fundraising event today for a local Children's Hospital, I have realised that, now, in a 14 mile radius of my home, I know, 6 people with Wegeners Granulomatosis (GPA) aged 14, 24, 32, 65, 70 and 75, plus a little girl of 4 and a young man of nearly 20 who both have Henoch Schonlein
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
Could this be vasculitis
Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot patches that suddenly appeared on both lower legs. Was given steroids and rash/red patches went after about 7 days. Suddenly reappeared yesterday along
Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot patches that suddenly appeared on both lower legs. Was given steroids and rash/red patches went after about 7 days. Suddenly reappeared yesterday along
Bradleysnan
in
Vasculitis UK
11 years ago
simvastatin
does anybody have to take this in their vasculitis drug regime have started on it of recent,and have gone from generally feeling well to feeling sick all the time are there any alternatives to it ? also im taking it in a small dose alongside amolodopine,which is generally ok,but a bigger dose is not
does anybody have to take this in their vasculitis drug regime have started on it of recent,and have gone from generally feeling well to feeling sick all the time are there any alternatives to it ? also im taking it in a small dose alongside amolodopine,which is generally ok,but a bigger dose is not
quinnster
in
Vasculitis UK
11 years ago
WHY YOU SHOULD HAVE A SCALE DIARY OF YOUR SYMPTOMS
This is not just for those with Sweet's or
Urticarial
Vasculitis
--it is for anyone dealing with daily medications and/or chronic conditions. Download the XLS file here: http://sweetssyndrome.files.wordpress.com/2013/03/daily_diary_scale.xlsx
This is not just for those with Sweet's or
Urticarial
Vasculitis
--it is for anyone dealing with daily medications and/or chronic conditions. Download the XLS file here: http://sweetssyndrome.files.wordpress.com/2013/03/daily_diary_scale.xlsx
notsossweets
in
MY SKIN
11 years ago
Does this sound like vasculitis?
Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be. In early March I went away on holiday and on arrival at the hotel I changed into shorts and noticed a few spots on my legs. Not thinking it was serious I
Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be. In early March I went away on holiday and on arrival at the hotel I changed into shorts and noticed a few spots on my legs. Not thinking it was serious I
italy321
in
Vasculitis UK
11 years ago
Is anyone else taking myfortic or cellcept . I have a very bad case of sle, many organs involved
Lizlauren
in
LUPUS UK
11 years ago
Why You Should Have Your Own Scale Diary
This is not just for those with Sweet's or
Urticarial
Vasculitis
--it is for anyone dealing with daily medications and/or chronic conditions. See the scale diary in action! I've got several months-worth of tables with my numbers filled in.
This is not just for those with Sweet's or
Urticarial
Vasculitis
--it is for anyone dealing with daily medications and/or chronic conditions. See the scale diary in action! I've got several months-worth of tables with my numbers filled in.
notsossweets
in
Vasculitis UK
11 years ago
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