What do YOU think was the trigger for your p... - Vasculitis UK
What do YOU think was the trigger for your particular type of Vasculitis? "Multiple Choice" Please leave any "appropriate" comments.
I really don't know. I was very happy with my life and none of the above were relevant.
I have C.I.D.P so have No clue as to what triggered mine.
I could not link it to any of the mentioned causes that you stated
Just my 'dear' immune system deciding it wanted to 'play' I guess
I honestly have no idea. I felt unwell for over a year before I was diagnosed. Feeling so grotty probably caused me some stress but I think the illness came before the stress (if that makes sense?).
The death of my father 😒
I was in building trade as was my uncle he had GPA I have MPA I believe dust etc is a trigger also doctors said 2 people in same family having a rare disease virtually identical was 14 million to 1 only connection was dust cement etc ?
What you say is very interesting Jase222. We know quite a few families with more than one case of Vasculitis in the family. Including two sets of sisters, cousins, mother and daughter, mother and son. ..... We also know others diagnosed with Vasculitis also have relatives diagnosed with other autoimmune diseases such as Rheumatoid Arthritis or Lupus. I believe there is research taking place in Cambridge regarding families who have more than one case of ANCA Vasculitis will try and find out if the research is still ongoing.
I had a form of vasculutis when I was 5 and was very ill for about a year in my mid 40 s with liver probs etc and things got worse and I developed wg
Hi Suzy. I too would be interested in an update on the Addenbrooks research please. My mother and maternal uncle both died of wg (which I have). Addenbrooks have my family details but I would be interested to know how the research is getting on. Thanks
We don't know but I am sure if you got in touch with Dr Lisa Willcocks at Addenbrookes she may just let you know what stage they are at with the research. Sadly, but understandably, these research studies can take few years to come up with any results or conclusions.
BW Susan
A European study report will hopefully be published later this year; it's not yet in pre-publication phase. I know it covers CSS, I'll try to find out some more. That will be interesting reading!
Does the European study cover any other types like GPA or MPA? I am interested to find out why U.K. has an incidence of Vasculitis of around 5.8, per million ,Germany and Norway a lot lower, but Spain , where I live has about 11.5 per million and my local hospital in Valencia province diagnoses about 6 patients per year for a population of only 100, 000. It all seems a bit bizarre that an area reputed to be one of the healthiest places in Europe to live, has such a high incidence of this rare disease. Anyone know of any published research or any thing else in the pipeline. Thanks for reading.
Rod_g in Spain
Apparently there are significant variations in the incidence of GPA in different parts of the world. In Northern Europe Including the UK the incidence is about 10 patients per million per year. GPA is much rarer in Southern Europe and also in Japan. The latest data suggests that there are about 130 patients per million here in the UK. The UK has a population of 65 million. That would suggest there about 7500 patients diagnosed with GPA here in the UK.
(Just out of interest, the population of Spain is just under 48 million. There are just under 1 million people from the UK who live in Spain.)
There are many research studies, here in the UK and world wide collecting data about patients diagnosed with Vasculitis. The UKIVAS Registry and the DCVAS Study. The links below explain both.
vasculitis.org.uk/professio...
vasculitis.org.uk/research/...
I think it was caused by long term family stress but also suspect that breathing in a ddt spray in Egypt whilst on holiday causing an illness that lasted a month - the only time I had ever had a sick note for my job was the initial cause. I never had any checks on my health following it, just told to take time off work till I felt better. I wish I had insisted on an X-ray and blood test at the time.
I think the trigger was long term (decades) high stress. Work/lifestyle/family. Living life in the fast lane for too long.
Both my parents died within a few months of each other. We had been an extremely close family. I had months off work with depression. Later stress and pressure levels at work became very hard to cope with and I never felt completely well again. I have had arthritis for a long time and had developed stress related asthma but the diagnosis of Wegeners came out of the blue for me.
I really have no idea I was fit and healthy before I got poorly. However I had had an ongoing cough but nothing that I thought would lead to this.
Dental work
I had insect bites to my legs that wouldn't heal, then my Mum died suddenly and on the day of her funeral my joints seized up, I rem not being able to bend my knees when getting out of the funeral car.
Continued from then, 1987.
I've ticked both infection and physical stress, but also have SLE. I severely injured my leg and had bed rest with leg raised for many weeks. It was during this time that the vasculitis presented itself.
Jess
i had the same thing happen. Fell on the ice. Was with leg up for weeks. Got shingles, then a few months later got Urticarial Vasculitis.
Hi itsjusmeli
Did your Drs link the two? Mine said it might be, but didn't seem convinced.
I've had two hours of it since then, but never get an appointment with hospital quick enough for a biopsy, but Consultants still insist its vasculitis, just from photographs I took.
Have you had many bouts since your accident and do you get any other symptoms?
Thanks for response.
Foss
I've had it nonstop for a year and three months. The doctors didn't link it. But I think the stress of it definitely contributed. I take vitamin d and butterbur, which keeps it nearly under complete control.
Sorry to hear that, I think I've been lucky. Hope things improve soon, thanks for replying.
Foss
I've work it dusty places all my life so I think that could have been a trigger along with mental stress.
Auto immune disease. Vasculitis destroyed kidneys.
MPA with kidney involvement, July 2013 diagnosis.
I haven't a clue what may have triggered this wretched disease. I thought everything was great with the world when my docs discovered I was near complete kidney failure.
Treatments saved me but even in remission, I continue to struggle.
I wonder if it was triggered by a combination if mental stress (job pressure) & the flu vaccination. My symptoms started within about 24 hours of having the flu vaccine.
I had had hep b some 5 years before I was diagnosed with wg and had liver problems for years before and since whether the wg caused the hep and then wg or visa versa who knows
Decades ago I was exposed to constant emissions of brick dust. I did not know at the time that I was Alpha 1 antitrypsin deficient and suffered a lot of breathing difficulties which my G.P diagnosed as asthma. Years later, aged 71, I was diagnosed with GPA. I have been told by the Alpha 1 Antitrpysin Clinic at the Queen Elizabeth Hospital, Birmingham, that there is an obvious connection between between A1AT and GPA.
I DID use to work in a laboratory, so there MAY be a connection. Mind you I also smoked, was (and am) rather fat-and so on.
The first symptoms of my vasculitis appeared during my teenager years and i truly believe it was triggered by trauma. My immune system didnt know how to deal with all the extra cortisol that was being produced and turned on itself as a result. I work in the field of trauma and there is increasing evidence to support this.
my arthritis was in drug free remission. I was bitten by a deer tic in Denmark. I had a bad reaction. My health deteriorated from that day.
I have WG/GPA and fibromyalgia.
My Rheumy told me that smoking had a lot to do with it, also the environment we now live in. I have now given up, better late than never!!!!!
I worked in a laboratory with radio active and poisonous chemicals.
To be honest I don't know if these things do actually cause it! I was first diagnosed with RA then years later said it was Lupus now also have sjorgens, had it for at least 28 yrs.
I have been badly handled for the 6 months since my diagnosis and had to asked to be referred to see anyone to help me....I have now also been diagnosed with Pyoderma Gangrenosum
In 2004 my wife suffered Myocardial infarction, in 2009 she developed Atrial fibrillation, In 2012 she had a suspected colon cancer removed by section, in late 2012 it was discovered that she had lung cancer and had ⅔ of her right lung removed. At the same time I was also under stress at work and in 2009 develeped problems with walking which was eventually diagnosed in 2012 as Rheumatoid vasculitis. As I now understand it Extreme Stress was the initiator which caused my immune system to depreciated resulting in a viral infection (prolonged) during which the immune system came back but by then the damage was done and the immune system started to attack my own body mostly in the synovial tissues. I also suffered Myocarditis caused by the vasculitis as well as peripheral neuritis.
For me it is in the family, my older sister have Takayasu and I also had a extremely stressful relationship with my partner and work was awful. Combination of two has triggered CSS.
I have EGPA which seemed to arrive with my divorce. I was interested to see that auto-immune disease appears to run in families - I have two sisters with Rheumatoid Arthritis and a brother who has had Guillaine Barre syndrome (don't know correct spelling) though he seems to have recovered from that.
Doctors confirmed it was the Hep B vaccination which triggered HSP.
Within about 3months I had had a severe chest infection, a pneumonia jab and PTSD surfaced from a trauma in childhood which was triggered, after this I initially started with chronic urticaria and Angioedema which then escalated into vasculitis.
Pretty sure in my case, this devistating disease is caused by my 45 year battle with severe rheumatoid arthritis inflammation. The inflammation is now attacking my muscles, circulation, eye, ear, & skin. Last year it attacked my colon & I came down with severe collagenous colitis... Now under control. The final insult was when I lost most of my waist long dark hair this past year. Now, at age 68, I'm suddenly grey. One can really go from almost black hair to grey overnight tho in my case, not from fright but from the neuropathy of vasculitis!
Melbourne Australia. My trigger was a root canal procedure in Nov 2014. Flares then occurred after vaccinations for annual flu shot and holiday shots.
I really have not got a clue, all started with swollen joints.......
Mine was caused by exposure to dust that had been in the workplace for at least 15 years. I have GPA (Wegener's Granulomatosis)
Cant think of a trigger for the disease but I used to SCUBA dive and my last dive before I started getting symptoms of WG was Port Talbot bay near the steel works
Think a combination of a very stressful relationship then moving house and possible leaking silicone from breast implant into lymph nodes- and a pretty bad fall from bicycle - up till then a pretty uneventful healthy record
Don't know what brought it on in 2013 but it was probably stress. Raised P ANCA not detected until l lost the sight in my Left eye, my Right eye "went a year later. Now have Vasculitis of the ENT with eye involvement.
Growing up I was always so fit an well,always healthy, then I had my family, I always lead a really busy life after my 2 nd child I developed vasculitis. I don't know what triggered it, looking back I was non stop, on the go all the time, I have auto immune diseases within my family. I kind of feel it could be linked to stress as whenever my rash an swelling comes out I seem to have been a bit touchy that day as if I were stressed. Or maybe it's cause I didn't give my body enough rest in earlier years an it's fighting back.
Possibly a facial injury sustained on a car door. I didn't go to hospital but probably should have as the bruise on my cheekbone lingered for 6 months. In addition I had been actively involved in the renovation of an Edwardian house which no doubt exposed me to nasty chemicals.
I think it had been bubbling away for a few months and an infection ( upper airways ) was the straw that broke the camels back
No idea, really. I've been plagued with allergies, sun rashes etc since childhood and was also the one in my family who was accident prone. Broken wrist, dislocated shoulder and appendicitis in the first 3 years of secondary school!
At university I did an extended course for my chemistry degree and worked with some chemicals that would be thought of as very dodgy now.
I think the Vasculitis was grumbling along for a long time, the flared up properly when I was under a lot of work stress.
I got my Churg Strauss (egpa) whilst working in a school which had lots of moulds growing due to damp getting in; also I sat next to a busy laser printer and always reacted very quickly to it (with sinusitis, and asthma); after time off work I'd recover only to relapse at every new exposure with the response becoming more and more extreme each time - until I ended up in hospital with severe eosinophilia etc.
Oh what fun. Rob
I really have no idea either! However, I had had many months of chest infections and periodic asthma which affected all my daily activities. Bowel problems then developed and I lost my appetite, leading to severe weight loss and then hospitalisation.
I have no idea. I had Cerebral Vasculitis . I had had a cold beforehand and my life was quite stressful, but had been for a long time (daughter with severe learning difficulties).
The consultant really had no ideas, although stress was mentioned. I'm just grateful they saved my life and got it under control x
I am sure that my vasculitis started with pneumonia and severe leg rash. Despite many visits to doctors and consultants (GPs thought it was my 'nerves') for joint pain, rashes, red eyes, atrial fibrillation, fatigue, feeling awful, etc. , and consultants it was not until 8/9 years later that I was diagnosed. Now I am treated by the wonderful team at Addenbrookes. Thank heavens.
I had mumps, then shortly after I had measles, even though I had the MMR vaccination
I now believe that it's possible that working 13 hour days because of staff cuts and then followed by the death of my dear Mum in law, may have triggered my WG?
My rheumatologist suggested there was a Nobel prize awaiting the person who found the cause(s) of vasculitis! I wish I knew the trigger for me - no real idea!
I've ticked the mental stress choice, as it seems most likely, but not really sure.
I have CSS so undoubtedly late onset asthma triggered the vasculitis. However, prior to asthma diagnosis my work location (desk) was only several feet away from a photocopier in regular use throughout each day, which may have been the trigger for my asthma in the first place. It would be interesting to know if Churg & Strauss had any reason to consider/discount this effect in the workplace?
The trigger for my G.P.A disease , I think my trigger was the norovirus as my symptoms
began after that.
I have been exposed to dust from renovating older properties over many years , ie knocking down walls and using plaster etc.
Impossible to say definitively what the trigger was but I was working with a range of toxic chemicals and a wide range of 'alien' genetic material in a university forensic science department.
I believe I was born with CSS (yes, they do now seem to coming round to the idea it can be, or is, genetic). Several triggers exacerbated the asthma component to the point where I am dependent on medications.
I know for a fact the flu shot done this to me
interferon treatment for hepatitis C caused ALL my problems
I seem to have had it all my life. Although diagnosed in June 2015 following months of tests, it would appear that I have had it all my life - nosebleeds from a toddler to age of 18 when I had nose cauterized, monthly sinus problems from onset of menstruation to menopause (12 -58years), occasional rash at time of periods from late 20s to early 50s - ties in with photos of urticarial vasculitis and then carpal tunnel problems and finally numb fingers and cramped toes. Diagnosis is mononeuritis multiplex secondary to vasculitis. My mum had corneal ulcers and COPD so it could be genetic but I wonder if it is due to her being given synthetic hormones when she was pregnant with me in 1953.
I have no idea what caused or triggered it, wish I did but knowing wont cure it.
Really no idea. I had fallen off my bike and bashed a rib but wouldn't say it was 'severe'.
I became ill with Vasculitis the day after my flu jab last year (October 2015).
Sixteen years ago, cut my foot, turned septic, was treated with high dose penicillin for 10 days, liver enzymes went through the roof, had liver biopsy and confirmed diagnosis of autoimmune hepatitis. Positive ANCA.
Two years later, bloody diarrhea, colonoscopy and confirmed diagnosis of ulcerative colitis. Positive ANCA.
Another five years later, sudden loss of hearing in one year (temporary), fever of unknown origin for one week, extreme vertigo, bloody sinusitis, confirmed diagnosis of GPA/Wegener, positive ANCA.
I have CNS vasculitis, severe arthritis, asthma fibromyalgia. Had 2 TIA second one was brain stem. Suffered with stress with ill parents on both sides and just think it took its toll. My sister has just been diagnosed with FMD and my mum had some major problems they never got to the bottom of. OA runs in my family from an early age. I don't know what the trigger was but first TIA my Neuro now says was a flare of CNSV and that was 2004.
...stress, OR repeated infections... But being incredibly prone to infections, I now wonder if that in itself was an early warning sign!
Gastric bypass had a staple twist that caused a bleed that wasn’t picked up for 12 hours.
AND STRESS
I am sure that my EGPA was triggered and accelerated into the now uncontrollable eosinophillic stage following hospital trauma resulting in a pneumothorax. I have had severe asthma for years but after the event I then had very high eosinophils and pulmonary infiltrates - I wonder if anyone else has had such an experience
No empirical evidence but I'm pretty sure from the timing and how I felt mine was related to having a mirena coil. My body hated it, and basically rejected it physically. I had a hysteroscopy before and after the coil, and in the short time I had it in I developed fibroid, polyps and endometriosis, from a baseline of a basically healthy womb. I then had a hysterectomy. Initially I put the tiredness down to that, but it didn't relent, the I started with other symptoms mainly neurological. Could be a coincidence, and a life has so many variables it's hard to pin stuff down. None the less that's what I think happened.
I have no idea. I was healthy and fit and 59 but like the silver surfer I developed a cough which got worse and worse. It was because of the severity of this cough that I went to the doctor and was diagnosed with TA. The cough was a symptom of the desease, not the cause, and caused (we think) by my extremely low iron levels.
