Before you became ill with Vasculitis or wer... - Vasculitis UK
Before you became ill with Vasculitis or were initially diagnosed with Vasculitis did you experience :-
John_MillsVolunteer143 Voters
I had problems with my ears, infections but also loss of hearing.
had an abcess and surgery to remove it, also had lots of stress
I was diagnosed with pneumonia
Where do I start?!
Bereavement (I took this VERY badly), repeated "pneumonia", ear infection (complete hearing loss in right ear for 3 weeks), severe asthma, personal stress (family member RTA).
I could go on.... In my mind the overriding factor was emotional stress.
Definitely for me the major factor was several years of high emotional stress. Just before the vasculitis symptoms showed themselves, I had a viral infection (head cold and cough) that lasted for weeks.
Ayla
Another one who blames extreme stress, in my case a parental divorce that became very nasty, and prolonged, and I was trapped as the (albeit young adult) child in that situation.
Neck surgery as I have a Degenerative spinal PROBLEM (no name - could be linked and Neurology sent me to Rheumatology when blood blisters got worse.
Psychological stress and repeated infections, plus exhaustion
Bad chest infection, and virus, post viral fatigure, pnuemonia jab and PTSD first started all within 12 months before vasculitis and urticaria first started
had a cyst under my arm which became infected and an ear infection which required antibiotic after antibiotic, left me totally deaf in right ear,this all happened over a 5 month period, count myself lucky that my GP had just finished training and had trained with a consultant who had experience of WG.
Had pneumonia undiagnosed for a month then a week in HDU in hospital.
I had miscarriage and in particular a cough for the previous year which I still have now after diagnosis 4.5 years ago?
Stress from divorce and then taking on high stress job. Had colds that wouldn't go away and immense tiredness long (years) before the disease was diagnosed.
I suffered from a really stressful period at work as I was in danger of losing my job and a flu type virus that kept coming back
I had problems with sinus and nose for years prior to diagnosis then it migrated to my lungs which is when got diagnosed.
A period of emotional stress two years before diagnosis.
Can't think of anything the first time , but the second time I flared after falling on the stairs and badly hurting my arm and shoulder
I was having a hysterectomy and typhoid salmonella hit me during surgery. Obtained from Ham eaten a day before. Very ill at that time.
No real cause that I can recall, initially I was told that I had picked up a virus which were causing symptoms but vasculitis was not diagnosed for 18 months by which time I was very ill with lots of different symptoms, ulcerated legs, arthritic symptoms, swellings, rashes etc etc.
My illness started some 4 to 5 weeks after having returned from Sub Saharan Africa where I had taken Malarone tablets, an anti-malarial drug. Subsequently, I took the opportunity to read through the instructions which are enclosed with these tablets and state that, in extremely isolated cases (1 in 10,000), taking Malarone may give rise to the onset of Vasculitis.
Interesting! I once came acrosss a person in a coma after having one dose of Lariam that he'd taken in preparation for a trip to Kenya! As far as I know, he's sadly, still in a coma.
I had had a number of illnesses, but nothing that could be connected with Vasculitis. Unfortunately there was no box I could tick for 'NO'.
Had chronic sinusitis given and op which worked for a short time experiencing it again as reduced steroids. Also had brittle asthma all of which is typical of Churg Strauss syndrome but it took the hospital medics only two emergency admissions to hospital to make a tentative diagnosis.
I'd had 2 to 3 years of chest infections and "intermittent asthma", plus I'd been told by a NHS Homeopath that I had bronchiectasis (disputed by my GP, but later confirmed!) Immediately before my hospitalisation and subsequent diagnosis I had severe bowel problems and weight loss (put down to "all in my mind" by my GP !!)
I had constant throat infections, kidney infections and went through a very stressful situation.
2 to 3 years of chest infections & the year before a period of intense emotional stress
Thought I had the cold and treated myself as didn't want to annoy Doctors. This was months before I started getting real achy joints and mobility problems. After 2 weeks of painkillers I had to get my mum to phone the dr's for a home visit as I couldn't breathe or move. This was when I got sent to hospital and finallly after 3 wks they found out I had vasculitis. So basically I was told that because I self diagnosed the cold/flu, it didn't clear up and that's what caused my vasculitis!?
2007 Was widowed then had major spinal surgery which became infected and 6 mths later blood test picked up failing kidneys and mpa diagnosed.
My initial symptoms were slight (just some weight loss and slight fatigue). I hadn't even visited a doctor at that point but after I contacted a cold virus I went rapidly down hill from there on.
I believe the ophthalmologist at Addenbrookes suspects a streptococcal infection in my right sinus was the initial cause of the WG.
Firstly I had very sore dry eyes for several years and had lots of treatment from the Ophthalmology dept of the local hospital for that. Next I had a very stuffy, dry nose for approx a year.
Following that I had very severe pain in my right side of my face which was initially diagnosed as sinusitis.
Treatment for the sinusitis by the GP didn't work so I was sent to an ENT consultant who diagnosed WG after a scan and later biopsy.
Stressful job & bereavement
I had a car accident which psychologically was very stressful shortly afterwards started with cold/flu like symptoms which turned to pneumonia and pleurisy within a couple of days, very scary never previously even had a chest infection. Was very ill for weeks and pneumonia two more times in following months before diagnosis.
Financial stress from my divorce and in danger of losing my job, I had persistent ear throat and chest infections for a couple of years before being admitted critically ill to hospital and diagnosed.
I had a period of several months with tiredness and weak legs. GP had my blood tested and thought I might have a blood clot in my left leg. No suggestion of Vasculitis though I subsequently discovered I had low platelet levels.
Finally diagnosed after a further three weeks in hospital, by which time my limbs had become useless. Later regained arm and leg use but never hands and feet.
Weeping sores on my legs - diagnosed as an allergy to our cat, Persistent cough, breathing problems and chest infections and finally, severe hearing problems.
Eventually taken into A & E with severe wieght loss and halucinations!
For about three years prior to being diagnosed with WG suffered with hearing loss and was treated for ear infections, and had grommits inserted, which were ineffective. Rhinnitiis and tinnitus, I still suffer with tinnitus.After looking back over letters from consultant which treated me for rhiniitius he did suggest further investigation for Sjogrens Syndrome.
I had what I thought was a viral infection, with lung complications, when the fibrosis showed up. Totally lost my voice for 6 weeks. The other symptoms started to show up about 6 months later. Diagnosed 1 year from start.
I had had a thing where I totally lost my voice for 2 weeks about 2 years previously.
So when did the vasculitis start? Your guess is as good as mine.
I was diagnosed with chest infection leading to pneumonia and eye infection.
I had severe joint pain at first, then flu like symptoms and exhaustion. I was also very stressed and cried quite a lot but haven't talked about it much!
I believe my condition (WG)was caused by the inluenza vaccine..I was in good health before this.The Patient Information Leaflet on the Vaccine (Sanofi Manufacturers of the Vaccine)states vasculitis can occur as e side effect to the injection...what more is there to say...I completed a Yellow Card,which was acknowledged by Sanofi....but nothing further has been heard
Like many have said, I think stress was a big contributing factor for me. A number of issues at work and in my personal life lead to a very stressful time and coincided with the worst of the Vasculitis. However I don't think it was the only factor as I know I had slightly reduced kidney function for a year or so before the Vasculitis really became apparent.
Originally an episode of very severe conjunctivitis and flu lke illness some months later loss of hearing in one ear and visual problems. What a horrible illness this is such terrible nocturnal headaches ,imsomnia with extreme exhaustion and recurrent eye problems.
I had radio active iodine for Graves disease, an overactive thyroid autoimmune disease & there were complications which could have triggered off CSS possibily.
Had pain in joints My 2008, was diagnosed with Rheumatoid arthritis June 2008, became ill with flu like symptoms early Oct 2008 and blisters on face and chest area. Was diagnosed with WG late Oct 2008. All suffered from emotional stress.
I am awaiting results from a biopsy...they think I may have Vasculitis...I have had Ulcerative Colitis for ten years...maybe a link?
I had been SCUBA diving in Port Talbot bay in Swansea and thought I'd picked up a bug/germ in the dirty black water, before then I was not aware of any problems with my health. WG 13yrs
Pathologically I traced it back to a viral infection that i couldn't shake off in July 200. In September of that year I travelled to Australia for a family visit. It was during that visit that my knees felt weak after a long walk. I found that I couldn't walk more than 200 yards without my knees being affected. On return to the UK I saw my GP who referred me to physiotherapy. That didn't work and over the next four years I developed a distinctive limp.
In 2012 the pain in my knees became worse and another GP referred me to Rheumatology. Here I was diagnosed with Rheumatoid arthritis and treated with Methotrixate and Naproxen. within two weeks of starting that treatment I developed ulceration on my lower legs and upon biopsy was diagnosed with Vasculitis. The rest is, as we say, history.
I had a consistent cough for over 9 weeks before GP did a blood test and was admitted to hospital in for 6 weeks !!!
I had repeated conjunctivitis( which I now know was episcleritis) in the two months before I develpoed the aching joints , skin rash ( erythema multiforma) and kidney symptoms that led to hospital admission. . Then diagnosed with vasculitis MPA
I had an influenza injection
My illnesses started with following a period of unbelievable stress and long hours at work. I was initially diagnosed with Lupus and then Raynauds.
It stepped up a gear and following a series of hospitalisations I had various additional diagnoses. I was then referred to St Thomas hospital who added a few more things. But vasculitis was first mentioned following a kidney biopsy following a scleroderma renal crisis. I didnt even pick up on it at the time as I have so many other labels thats its easy to overlook additional ones.
Vasculitis was mentioned again after I lost my hearing. Even then I wasnt aware it had been mentioned previously until I reread old medical notes.
I have never received any detailed information with regards to vasculitis so this forum is useful. As I have so many labels its hard to know what one to give attention to.
I had a nasty chest infection and flu that had me bedridden and I ached all over. The rest of the family also had flu and my youngest son had pneumonia. They all recovered but I just couldn't shake off the residual cough and recurring chest infection even with several courses of antibiotics.
Hi. I was diagnosed with GPA formerly known as WG 4 months ago now. Although looking back symptoms of eyes red and misdiagnosis of some form of itis of the eye started when. I was really stressed in 2011 but than it went. I than went on to have a miscarriage and several nose bleeds...(first ever one was 30min) emotionally stressed at this point. After this my eyes went red again january and since October had flu like symptoms. But everything just got really worse come January when my ears were aching n eyes red again and bleeding nose and joints aching all over....was on n off work for 4 months! Until I literally took myself to the hospital because GP SAID to take ibuprofen. Which just made me feel like my heart was going to jump out of my chest at such a high rate. Couldn't breathe after taking it for 2 weeks straight as directed.
No symptoms I just collapsed, and was taken to UCH, in London. Although I had had a sore eye no-one made any connection, until afterwards.
