Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,759 members6,736 posts

All posts for January 2018

Be Careful Everyone

Many of us, if not all of us, use Google as our Search Engine. I had a VERY stra...
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How to get the best from your GP!

This came up on my twitter feed, an interesting read with some good advice. Tha...
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Latest EULAR guidelines on Imaging for Large Vessel Vasculitis diagnosis.

http://ard.bmj.com/content/early/2018/01/19/annrheumdis-2017-212649
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7 Week Wait for First Rheumatologist Appointment

Hi, I’d like to thank everyone for the tips on referral and especially the guida...

Has anyone with GPA - vasculitis gotten their kidneys back?

Has anyone with GPA - vasculitis gotten their kidneys back? I was diagnosed on...
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Vasculitis – GPA

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I ...
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So my bloods have come back that I have tested positive for Anti-neutrophil cytoplasmic antibody

Could someone tell me what this means, I have ongoing issues with severe pins an...
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new to all of this

My husband has to go for a biopsy next week, as Drs are unsure if he has this co...
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Egpa brain issues

Hi! I was searching the web and found this site. I live in Canada and got super...
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How to access clinic reports?

Many of you seem to have detailed reports on your bloods and clinic findings. I ...
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Diarrhea and mycophenolate

Hi, my son has Mpa from March 2017 and he takes prednisone, mycophenolate (myfor...
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Has my daughter got cerebral vasculitis? Google 'Girl with mystery illness' photos & illness description were in newspapers Nov 2016

Originally thought to have suspected seronegative autoimmune encephalitis, has m...
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Struggling with treatment for my Para neoplastic Encephalitis in the brain

I am being treated with 60mg of presione after three 1000mg infusions. I was to...
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MPA / Rib Cage Pain -- Anyone else??

MPA July 2013 with kidney involvement For a few years now, in addition to the sy...
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Any Similar Experiences?

Hi, I am Alliand. , I sense the anxiety and frustration as well as optimism in m...
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North East Support Group meeting

NORTH EAST SUPPORT GROUP MEETING. The next meeting will take place on Saturday 3...
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What is Going On?

Is there a connection with the microvascular ,the lymph system & the heart ? W...

Biosimilars compared with rituximab

I have MPA. My next infusion will be Truxima, a biosimilar for Rituximab. Has an...
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Swelling around the eyes

Hello For about 2 weeks, I've had swelling and purple discoloration under my eye...
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Cyclophosphamide

Hi all, I wondered whether anyone could help me with a question please? I had ...
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Severe itching and rash with EGPA

Hi I was diagnosed with EGPA in August 2017 after several years of not being lis...
ElaineRH profile image

IgG4

Has anyone been diagnosed with IgG4 Thank you
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Churg Strauss ( EGPA) Personal Experiences wanted

NICE are shortly going to carry out an appraisal of Mepoluzimab for treating EGP...
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Mepoluzimab for EGPA ( Churg Strauss Syndrome )

NICE are shortly going to be carrying out an appraisal to assess if they should ...
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Moderator

Vasculitis Support Newsletters from France and Holland

On Friday, coincidentally, John and I received 2 hardcopy vasculitis support New...
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Possible CNS vasculitis

Dear All, I’m still struggling for a diagnosis. On Friday, Jan 12, I had a lum...

CBD Oil

Just wondered if anyone has tried CBD oil for vasculitis pain ...
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Vasculitis colchicine

I'm new to all this been diagnosed with l v and given colchicine bit apprehensiv...
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Second Rituximab Infusion

Hi, after my last post I was seen by my consultant last Thursday and the second ...

Stopping my MMF?

Hi all. I am a 71 year old who was diagnosed with (wegeners) MPA during Oct. 201...
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