In the period before you were diagnosed with... - Vasculitis UK
In the period before you were diagnosed with Vasculitis, did you experience any of the following? ( add comments as you see appropriate )
Suzym2uModeratorVasculitis UK153 VotersPlease select all that apply:
No fracture but fell off my bike and whacked my ribs causing pain and breathing problems for a bit.
As well as flu like infection I also had emotional stress a short while before.
Contamination public water supply. Other people don't seem to have been affected.Upper respiratory infection lung pain kidney and abdominal pain enlarged lymph nodes muscle and bone pain
Husband had.rare cancer and poor prognosis but survived
My father died suddenly of a heart attack in May 2002. I had an emergency aortic valve replacement in November 2003 and it was from the biopsy from the valve that I was diagnosed with TAK.
My parents both died in March 2012. The first noted crop of spots started in October - the day before I graduated. I might have had spots before but I have had episodes of spots and blisters and worsening health ever since. Biopsy in May 2013 showed lymphocytic vasculitis.
In common with my reply to this poll there are various factors involved. Viz a viz . In 2004 my wife had a MI, in 2009 she developed AF. During this time I had a problem with a manager at work, the incident which I won at a subsequent enquiry. In 2009 I had an viral infection which caused me to lose weight (about 1 stone) and which I had difficulty in shifting. Subsequently I developed difficulty in walking, affecting mostly my knees which was put down as physiological. I suffered this until 2012 when the pain was most uncomfortable. It was then that we looked at it more seriously. Both my GP and I thought it could be one type of disease but my occupational doctor thought it could be vasculitis. Referral to the RFH indicated that I had RA and was treated with Methotrixate which proved allergic to me. Ulcers occurring on my lower legs indicated a vasculitis aspect which was proven by biopsies. Treatment: 750ml I.V. Transfusion monthly for 6 months+ 60mg Prednisolone . Subsequent treatment: 2g Mychophenolate XD, Prednisolone now reduced to 6mg XD.
Due to reduced immune defenders am susceptible to viral infections which can cause, in my case, myocarditis which is a secondary affect of RA.
Apart from this treatment seems to be working with no ill affects. Still have neuropathic conditions in ankles but expect these to improve over time.
As a gardener, from time to time, I am subject to insect bites/ stings but consider these to be of no significance in relation to my condition.
I ticked"other" as I had a stressful job for many years prior to diagnosis. I really loved the work but it was unrelenting as I was working in a team offering services to people who were carers. We struggled to meet the needs of those dependent on the services and, because of this, made huge and ultimately successful efforts to improve the services. It all took its toll although I really enjoyed it. I was told that the likely cause of my vasculitis was a sinus infection so have also ticked "significant infection".
I had been experiencing recurrent chest infections and the sudden appearance of raised itchy spots on my body,which would last for about half an hour only. I was also having work related problems due to the frequency of being off sick with the chest infections. Then suddenly my dad passed away unexpectedly and my health deteriorated very quickly after this. Approximately 7 months later I was diagnosed with WG.
Diagnosis of MPA with kidney involvement was made in July 2013 without any of the pre-conditions listed in the above poll.
after a long remission of my polyarthritis and med free, I was bitten by a deer tic in a danish forest. I had a significant reaction which anti-histamines helped. My arthritis flared up and I went back on meds. this got progressively worse and I had many infections;- chest; throat; ear; eye; skin; some at same time, never actually getting over one before the next began. I found moving difficult & painful, muscles seized up and my hand closed up leaving only thumbs & index fingers. [ -ve for lymes]
I was in my final year of a four year degree.
Hepatitis and Flu injections at the same time which trigged my Polyarteritis Nodosa. For 18 months I was treated by an 'expert' who was giving me drugs to treat my Myalgia (as that was his diagnosis) which actually made me worse. He got most offended when I asked for a second opinion. Second opinion saved my life, as I was then diagnosed correctly and given the correct treatment.
By this time I could hardly walk, suffered severe mucle, joint & bone pain and just about everywhere together with a high element of swelling.
I had an operation onmy nose due to the nasal congestion that was not being cured by drugs. I still suffer from the nasal congestion but not so bad.
Other - Stress. I would not class it as major but was largely work related.
Stress of younger sister dying from aggressive cancer. And my father the year after. Halfway during this time my son was involved in a near fatal RTA. And I needed surgery for an unknown growth on my ovaries. Oh and in between all of this I had repeated bouts of pneumonia. Worst time of my life.
Stress work related
I had major stress levels in August /September 2012 in October I developed a breast abcess which needed to be drained ended up staying in hospital for 1 week . Returned 1 week later to be readmitted due to infection , ended staying in for 3/4 weeks . Diagnosed in December with WG .
External and internal body Blood blisters and tiredness. About two years before large bleed when urinating which would clot and hospitalised and flushed with water for about 1 week followed by another week to stop bleeding and never found the cause?
I didn't realise at the time but the very first indication was thyroid inflammation. I was working in West Africa at the time. I was seen by a South African medic and something she said has always stuck with me. She said "What you have to remember is that when a European visits Africa for the first time, their autoimmune system goes into overdrive". Shortly afterwards I started experiencing really bad headaches, then the rash. Personally I think workplace stress was the biggest factor.
Did You take some vaccine before you went to Afrika?
Yes . I was taking doxycyline 100 mg daily as a suppressive prophylaxis. I started 10 days before my first visit. I was working in Angola for 4 years, on doxycycline all the time. I believe my first diagnosis in Africa was hindered by the fact that WG gives a false positive for malaria. I was initially being treated for malaria until the correct diagnosis, some 3 days later.
One of the side effect of doxycyline are inflammation of the joints. It is know that vaccine and other medications can trigger autoimune diseases.
Infection and over growth of candida, mainly in nose, proceeded to lungs, which caused my asthma symptoms. Alas sounds similar to another person on here, I was in a particularly fast paced job, ever changing and goal posts being raised relentlessly, I needed to take time off! my manager was non to sympathetic and pushed and pushed for me to prove what was wrong with me! my doctor had to write to him to confirm why! Took a holiday to Ireland followed by a variety of symptoms whilst there and on return, mainly stomach issues and manic nerve pains, admitted to A& E, diagnosis eventually CSS. One question sticks in my head 'have you been around sheep at all' perhaps the parasite was sheep derived! anyway that's my story
I got asked the question 'Have you been around sheep at all too!!!'
All I could say was 'The nearest I get to sheep is travelling on the motorway and seeing them in fields...' <grin>
Wisdom tooth infection, brought about the final diagnosis. However I had not been right for 7 years following the traumatic birth of my first daughter, involving significant blood loss and blood transfusion.
I did get bitten by a ferrel cat at our house in France, but this was a year before I got diagnosed with MPA
The death of our daughter-in-law, and then the break-up of our eldest son's marriage both occurred before I was diagnosed, but I don't know if there is a connection! I had experienced sinus trouble and nose pain for some time before diagnosis of WG.
With hindsight, a wonderful thing!, I had had an eye infection not long before I collapsed. I have to say that, at the time, no-one suspected anything other than a slight eye infection- not uncommon particularly working in London.
In truth I don't really know.
None of these. I was diagnosed in 2009 but with hindsight did have similar symptoms in 2002 which I put down then to car accident, relationship breakdown and dramatic weight loss. Perhaps it was all the same thing and went quiet for a few years in between? I also had workplace stress in the weeks preceding the symptoms that led to diagnosis. Stress and infection definitely exacerbate and trigger flares but did they activate it originally? Not sure.
I had spots come on my legs also I felt that I had got holes in my socks I checked they was ok the spots disappeared then they came back and I could hardly walk
Massive staphylococcal infection that required surgery and a week of IV antiobiotics
I had two occasions when I was exposed to asbestos dust at work; that together with the traumatic loss of my dear mother in law may have had some bearing? Also had significant weeping sores on my right ankle which was diagnosed as an allergy to our cat, and persistant cough which was never diagnosed despite my complaints.
Very Interesting Poll
I had a bad virus one year before diagnosis but gradually lost weight, appetite etc from then on. Caught from someone who had been working on a Caribbean cruise ship so could have come from anywhere (not just a native cold, if you see what I mean)
A combination of things in starting with long work hours was doing 12+ hours for prolonged period followed by an awful bout of tracheitis that turned into a deep chest infection which triggered my then under control asthma, all of this was still settling when I was diagnosed with a stomach infection and things spiraled out of control. Although I have had bad periods like this before and they have been linked to.
Pneumonia jab, plus the infection and PTSD
1) Went SCUBA diving in Port Talbot bay near the steel works
2) was exposed to infectious TB whilst working in ITU, this made them think I had TB!!
I started getting slight pains in my left arm, as well as bits of dizziness and a curious feeling that I called 'walking through treacle'! when my father died, and my mother was demanding 24 hour attention. With three teenage children, a full time job, and my frail mother in law living next door, it wasn't a great time. These symptoms reappeared whenever I was stressed, and I just put them down as warning signs that I should ease up.
Just over two years ago, I was in the final stages of writing a text book, when the publisher assigned me yet another new editor - and she announced that the book was pretty well rubbish and I had three months to redo it! I was working silly hours, and that's when I finally collapsed, and ended up with several visits to A and E and a DX of Takayasu's. But at my last clinic visit, new scans showed that the blockages in my arms are mostly severe scarring...so this has been going on for a very long time, and the consultant thinks that it could well date back to my father's illness and death. I have built up a good set of collateral? mini- arteries that carried me through until the next phase of severe stress.
WG only correctly diagnosed at 33 after needing surgery to remove small intestine and more investigations were done. Had been ill etc since early childhood
Having to travel over to Spain & watch my father dying, & dealing with the complications of being over there, the worst period of my life, even taking into account I had bowel cancer twice 30 years ago
Tony
I forgot that in between my parents dying and my graduation I had suspected bowel cancer. Luckily it turned out to be a polyps which they removed. 2012 wasn't a good year... and 2013 hasn't been brilliant - vasculitis and MGUS diagnosed...
I also had a persistent cough, especially in winter, probably a year or two before diagnosis.
It was the heavy cold virus that really set the wheels in motion but over the previous twelve months I experienced weight loss and bouts of tiredness.
Pneumonia and six days in HDU. First time I got the rash and very painful swollen feet. despite recurring symptoms, rash, breathlessness, painful joints, etc. etc., it was 7 years before I was diagnosed.
Husband died of muscle wasting disease and septicaemia Jan 2007, had major spinal surgery for stenosis Sept 2007 which became infected. Started feeling unwell Jan 2008, flu like symptoms, red eyes, joint pains,, etc. Had routine blood test because taken off declofenec before spinal surgery in March admitted to renal with kidney function 20%. MPA confirmed by biospy. Yes a stressful time
The only event which could have broken the skin and allowed the problem to manifest itself was scratching my leg on dead coral whilst swimming.
I Ticked 3, stress, operation and other as in 2007 I was diagnosed with cancer which meant I had major surgery ergo stress and other as I had more surgery in 2008. From that point onwards I was never really well, periods of odd 'flu/ viral infections, rashes, fatigue, sores, aching joints and muscles, excruciating pain in left arm- all non specific and GPs dismissed .... symptoms just slowly built up and got worse until my first major flare ending up in A&E with fits, unable to move kept in hospital for a month in 2010.
Before being diagnosed with vasculitis - I lost three members of our immediate family, my mother (who had brought us up single handed after losing my dad in a plane crash when I was eight), my father in law, my nephew and 16 yr old pet dog all died with a few months of eachother. Then, on the way to Gatwick airport to visit my little grand-daughter in Greek islands who had pneumonia - we were hit by a 50 ton Dutch lorry who just indicated and pulled straight out hitting our car in the middle lane (outside lane full). He spun us 3 revolutions in the air and we came down agaist the inside lane crash barrier facing in the opposite direction. It was very traumatic but we survived!! I really believe all this accumulated in my diagnosis and within a few months my husband was diaganosed with throat cancer (he is now completely clear) - which the consultant thought was directly related to the above points!! You never know!
unknown reason why I got WG, it came out of the blue. it started with chest pains on right side of lung, told it was infections seems to clear up with anitobtics within a year it flared up again, sent for xray found shadow on right lung, from then with blood tests and biopsies got the diagnosis.
I recall I had insect bites few of years ago this may triggered it??
Very Stressful relationship
Breast implants
Serious Sleep disorder
Moved house
Long time stomach problems
Loss of baby
Bad Fall from bike
Scratch from ferrel cat
Maybe some of the above?
Could hardly move with pain in legs and shoulders doctor gave me painkillers with no tests! ....treated for pmr until scan showed GCA vasculitis
Our daugther took swine flu vaccine and hepatitt b vaccine before she became sick. We belive it is the flu vaccine with squalene that trigger her immun system ...
Thank you everyone for contributing your very interesting, and in some cases, very sad responses.
It does seem to confirm that both physiological & psychological stress might play a part and that infection can be very much in the frame. At present, the hunt is on for the cluster or clusters of genes that make us susceptible but it still needs that "environmental" trigger to set it all going wrong. Some current thinking is that the immune system is usually like a wild beast, destroying everything indiscriminately, but there is an inbuilt mechanism for keeping it under control & making it behave. Auto-immune disease is maybe where the control mechanism breaks down. It's all very interesting - unless you are on the receiving end, of course!!
I had an epidural I injection into my spine due to having compressed discs in my lower back which cause back and leg pain. I was never well after that. Rushed to hospital with sepsis then eventually rushed back to hospital with suspected bleed on the brain. Didn't come out for 2 months while they tried to fnd out what was wrong. Eventually after a brain biopsy I was diagnosed with Primary cerebral vasculitis. Prior to all this I had been under a lot if stress at work and travelling around Europe and basically doing too much. We all think that the epidural injection had something to do with my getting vasculitis but doctors dispute this. Any ideas?
Emergency removal of appendix. Significant infection following. Remained in hospital for 5 weeks
Was bitten by an insect at the end of June, I believe this happened whilst I was on shift on a hospital ward. In the next four nights on shift my bites got worse with blistering and redness around and swelling plus I had a rash on my leg and opposite foot especially around two of my toes so I went to a&e on my break on my last night shift. I was diagnosed with cellulitis and given 250mg of antibiotics, I doubled it and went to my gp the following day who agreed it best to double so gave me more of the same but 500mg plus another antibiotic 250mg. Three or four days later it wasn't getting any better and the rash had started forming into scabs so my eldest daughter took me back to a&e where they called for a dermatologist to look at me. She told me to stop taking the antibiotics as they don't work because my condition was called vasculitis and the treatment for this was steroids. She said that first of all she was giving me a cream to spread on my blisters and that she wanted to see me the following week in her clinic. I used the cream until the blisters popped when it became to painful. My daughter took me back to see the dermatologist and I told her it was getting worse and too painful to put cream on so she started me on 40mg of steroid tablets and admitted me to hospital. This was a complete farce and waste of my time as I was put on a ward on Thursday and being told I could go home on Friday morning but I refused and said I was staying there until something was dome for me. Eventually a rhumatologist dr came to see me and said he would take a biopsy from my leg. He took it from a scab on my leg. This less than two weeks later started to ulcerate too so now I have two very painful very bad ulcers on the back of my left calf and two of my toes on my right foot are also ulcerated. The pain in my toes however is different from the pain from my leg. My biopsy was inconclusive I believe so I asked what that meant but not given an answer apart from it didn't mean I don't have vasculitis.
I had a mental breakdown in October 2011 and received 10 sessions of ECT. In April 2015 I was hospitalised with cellulitis of my leg. A blood test showed p-anca positive. The consultant is not convinced I have vasculitis but is keeping an eye on me. So I'm a bit in limbo.
