Experiences with

Vasculitis

Vasculitis means inflammation of the blood vessels.

Inflammation is your immune system's natural response to injury or infection. It causes swelling and can help the body deal with invading germs.

But in vasculitis, for some reason the immune system attacks healthy blood vessels, causing them to become swollen and narrow.

This may be triggered by an infection or a medicine, although often the cause is unknown.

Vasculitis can range from a minor problem that just affects the skin, to a more serious illness that causes problems with organs like the heart or kidneys.

There are many types of vasculitis. The rest of this page discusses a range of potential causes.

Eosinophilic granulomatosis with polyangiitis (Churg-Strauss syndrome)

Eosinophilic granulomatosis with polyangiitis, also called Churg-Strauss syndrome, is a type of vasculitis that mainly affects adults aged 30 to 45.

It can cause:

It can also affect the nerves, causing weakness, pins and needles or numbness, and sometimes damages the kidneys or heart muscle.

It's usually treated with steroid medicine.

The Vasculitis UK website has more information about eosinophilic granulomatosis with polyangiitis.

Giant cell arteritis (temporal arteritis)

Giant cell arteritis is a type of vasculitis that often affects the arteries in the head and neck. 

It mostly occurs in adults over the age of 50.

It's sometimes called temporal arteritis because the arteries around the temples are often affected.

It can cause:

It also commonly occurs alongside polymyalgia rheumatica.

The main treatment is steroid medicine. 

Find out more about giant cell arteritis

Granulomatosis with polyangiitis (Wegener's granulomatosis) 

Granulomatosis with polyangiitis, also called Wegener's granulomatosis, is a type of vasculitis that mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys.

It mainly affects middle-aged or elderly people.

It can cause:

It's a serious condition that can be fatal if left untreated, as it can lead to organ failure.

It's usually treated with steroid medicine or other medicines that reduce the activity of the immune system.

Find out more about granulomatosis with polyangiitis

Henoch-Schönlein purpura

Henoch-Schönlein purpura is a rare type of vasculitis that usually occurs in children and can affect the skin, kidneys or bowel.

It's thought to be triggered by the body reacting to an infection.

It can cause:

It's not usually serious and tends to get better without treatment.

Find out more about Henoch-Schönlein purpura

Kawasaki disease

Kawasaki disease is a condition that mainly affects children under the age of 5.

The characteristic symptoms are a high temperature that lasts for 5 days or more, with:

  • a rash
  • swollen glands in the neck
  • dry, cracked lips
  • red fingers or toes
  • red eyes

Intravenous immunoglobulin (IVIG), a solution of antibodies, and aspirin are the 2 main medicines used to treat Kawasaki disease.

Aspirin is not usually recommended for children under 16, so do not give aspirin to your child unless advised to by their doctor.

Find out more about Kawasaki disease

Microscopic polyangiitis

Microscopic polyangiitis is a rare and potentially serious long-term type of vasculitis that most often develops in middle-aged people.

It can affect any organ, but particularly affects the lungs, kidneys and nerves.

It can cause:

It's usually treated with steroid medicine or other medicines that reduce the activity of the immune system.

The Vasculitis UK website has more information about microscopic polyangiitis.

Polyarteritis nodosa

Polyarteritis nodosa is a rare type of vasculitis that particularly affects the arteries supplying the gut, kidneys and nerves.

It tends to develop in childhood or in middle-aged people.

It can sometimes be triggered by an infection, such as hepatitis B, but the exact cause is uncertain.

It can cause:

It can be very serious if not treated. The main treatment is steroid medicine, and sometimes other medicines that reduce the activity of the immune system.

The Vasculitis UK website has more information about polyarteritis nodosa.

Polymyalgia rheumatica 

Polymyalgia rheumatica is a type of vasculitis that's closely related to giant cell arteritis. 

It mostly occurs in adults over 50 and is more common in women than men.

It can cause:

  • pain and stiffness in the shoulders, neck and hips, which is often worse after waking up
  • a high temperature
  • extreme tiredness
  • loss of appetite and weight loss
  • depression

The main treatment is steroid medicine, which is usually used in lower doses than for giant cell arteritis. 

Find out more about polymyalgia rheumatica

Takayasu arteritis

Takayasu arteritis is a type of vasculitis that mainly affects young women. It's very rare in the UK.

It affects the main artery from the heart, as well as the major arteries branching off it.

It can cause:

Treatment is usually with steroid medicine.

The Vasculitis UK website has more information about Takayasu arteritis.

Other types of vasculitis 

Behçet's disease

Behçet's disease typically causes mouth ulcers and genital ulcers, and is more common in people from Greece, Turkey, the Middle East, China and Japan.

Buerger's disease

Buerger's disease affects blood vessels in the legs and arms, leading to reduced blood flow to the hands and feet. It's closely linked to smoking.

Cogan's syndrome

Cogan's syndrome is inflammation of the blood vessels in the inner ears and eyes.

Cryoglobulin-associated vasculitis

Cryoglobulin-associated vasculitis is associated with proteins in the blood called cryoglobulins and can occur after a hepatitis C infection.

It causes a rash on the lower limbs, joint pain, nerve damage, tummy (abdominal) pain and kidney problems.

Hypersensitivity vasculitis

Hypersensitivity vasculitis is usually caused by a reaction to a medicine, such as non-steroidal anti-inflammatory drugs (NSAIDs) or certain antibiotics, and results in a temporary rash.

Primary angiitis of the central nervous system

Primary angiitis of the central nervous system is inflammation of the blood vessels in the brain.

Rheumatoid vasculitis

Rheumatoid vasculitis is vasculitis associated with rheumatoid arthritis.

2,858 public posts

Corona virus

I have Vasculitis GPA I am on methotrexate I have high blood pressure. On Vasculitis site it says for having GPA I should be high risk and looked on NHS site its not clear that I am. I also suffer with my nerves and i am very concerned about my position. Thank you in advance
buster1502
buster1502in Vasculitis UK

Anca vasculitis

Hi, I have anca vasculitis which started with a rash on my legs and arms in 2018 and now it has progressed and now have it in my lungs, on a high dosage of prednisone, 2 weeks of 60mg and now reduced to 40mg, until the doctors start me on other meds, Have been offered to do a trial if I qualify using
Cookyboy1
Cookyboy1in Vasculitis UK

Mpa vasculitis

Hi all. I’ve recently been diagnosed with mpa after months of ilness and testing. Has anyone had eye problems and what other symptoms have you experienced? I currently have terrible trembling which is driving me mad. Is this down to steroids or cyclophosphamide? Thanks
Johnnyboy66
Johnnyboy66in Vasculitis UK
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Advice needed

I have had 2 flare ups of Urticarial vasculitis but haven't had one for nearly a year. Saw my dermatologist on Tuesday and she signed my off as I'm am not suffering at all and on no meds related to vasculitis. Should I be worried or not?
amywools26
amywools26in Vasculitis UK

Vasculitis and immunosuppressants

I imagine a lot of people with vasculitis will be asking the same question. I wonder if anyone else has asked their supervising doctors this question and if so what their response has been?
MAC12
MAC12in Vasculitis UK

Vasculitis chest probs

Hi had my first infusion of rituximab days ago, not expecting miricles but was wondering why I still have a husky voice and feel as though when I get like that (which is quite often) there's a need to clear flem from my throat, can anyone explain this please, lve done a peek test and am reaching 450,
Cookyboy1
Cookyboy1in Vasculitis UK

Cutaneous Vasculitis (legs)

I was diagnosed with vasculitis leukocytoclastic in the beginning of november. I'm doing prednisolona since that time and I cant do other medication because I have Crohn disease (right now Im not doing any medication for crohn disease).
Carina03
Carina03in Vasculitis UK

High risk or not with cerebral vasculitis and the virus

Hi my husband had cerebral vasculitis nearly 7 years ago. He has not been on any drugs for a few years now, but did start getting seizures about 2 years ago. He is on meds for high blood pressure and seizures. Would he be in the high risk category now?
Simmonds797
Simmonds797in Vasculitis UK

Anyone know about CIPD

I was diagnosed with mononeuritis multiplex, secondary to vasculitis in 2015. I was on long term steroids followed by two years on mmf.
linjoyfrench
linjoyfrenchin Vasculitis UK

Cerebral Vasculitis to Vasculitis Dementia

I’ve become depressed and anxious so could the Cerebral Vasculitis now be Cerebral Dementia.
phil3
phil3in Vasculitis UK

Help

Our doctor has told my husband not to come to the examination about vasculitis because the other checks are much more important. I am afraid that they don´t see the vasculitis.. Any help from anybody?
Lima51
Lima51in Vasculitis UK

Bladder irritation after cyclophosphamide.

I was diagnosed with GPA vasculitis in 2016 and given two doses of cyclophosphamide.I was given Mesna tablets at the same time to protect the bladder as this was a known side effect of the treatment.
pigeon12
pigeon12in Vasculitis UK

Central lines?

What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?
samakaaaa
samakaaaain Vasculitis UK

Continue PIP FORM

It’s stressing me out which is not good as stress and Vasculitis do not mix. I am also on tons of medication which makes me forgetful, confused, unable to concentrate..... the list goes on.
Reggie1411
Reggie1411in Vasculitis UK

Chronic fatigue

I was diagnosed with anca vasculitis MPA in May of 2017 it had a terrible effect on my eyes and my kidneys before I realized what I had. It now seems to be in remission(not getting any worse) but the fatigue is terrible. Exercise seems to make it even worse.
Retire3603
Retire3603in Vasculitis UK

Vasculitis & heart problems

I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy 43 year old. My question is does anyone on here also have heart issues on top of their vasculitis?
Mish-da
Mish-dain Vasculitis UK

Can Prolia trigger vasculitis

I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
Corcaigh
Corcaighin Vasculitis UK

Incontinence and cerebral/CNS vasculitis

Anyway if you have brain vasculitis and incontinence it might be your vasculitis, it needs to be investigated properly (including by an urologist), and there may be things the medics can do to help you.
vivdunstan
vivdunstanVolunteerin Vasculitis UK

Vasculitis, Renal and Respiratory Training Day - Imperial College London

There will be a feedback report in the next Vasculitis UK newsletter in the Autumn.
Suzym2u
Suzym2uVasculitis UKin Vasculitis UK

In May 2019 volunteers from Vasculitis UK took part in two separate Vasculitis Medical Education Workshops in Manchester.

Vifor Pharma along with Shanali Perera held an ANCA Vasculitis Resource Evaluation Workshop in Manchester. It was attended by 4 patient volunteers and 1 carer. All aspects of raising awareness of vasculitis were discussed including raising awareness through Art.
Suzym2u
Suzym2uVasculitis UKin Vasculitis UK
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