What were your first symptoms of your partic... - Vasculitis UK
What were your first symptoms of your particular type of vasculitis? Please leave any appropriate comments. (Multiple choice)
John_MillsVolunteer172 VotersPlease select all that apply:
Year-long cough, then two strokes.
Nasal congestion
Shortness of breath, hand swelling.
Sinus pain and headache
Nb I also had a painful nose but thought it was my glasses!!!
Then painful eye.
Gradually all the typical symptoms came on but you only know retrospectively that it is vasculitis at the time you don't understand why you feel so dreadful.
Blood Blisters on Body , Internal Bleeding and a stroke which followed by every 2-3 Months TIA's
Lungs
Lungs & breathing problems
Nasal crusting for 18 months then severe joint paint lung, pleurisy for the 5th time and then the rash
i had a virus of some kind for 10 weeks that eventually went away but left me totally exhausted with night sweats
Started with bouts of shortness of breath and atrial fibrillation following pneumonia. Still continues some twenty years on. Lungs and heart still not fully diagnosed!
I have found it very difficult - no, impossible to get the symptoms assessed together. All are treated by specialists but no-one to 'join the dots' and no access to my records so neither I nor my doctor can see the findings and test results. The £200 million computer system at Cambridge failed, has not been replaced after four years so there is no access to full records. With six to eight month waits for appointments the system is completely uncoordinated. Wonderful doctors but no coordination or communication, the admin is haywire! I was 55 when this started, 63 when I got the Vasculitis diagnosis and still working on the heart and lung problems at 75!!! I fear I shall die of old age before it is sorted.
Is this at Addenbrookes if you don't mind me asking this? Thank you.
Fatigue and persistent colds. Have MPA with renal involvement
Painful joints, however I had other respiratory symptoms which could have been normal nasal issues.
I had flu like symptoms that wouldn’t clear & was told it was a virus. Lots of sneezing allergies & Suddenly developed asthma as an adult. I felt generally unwell for about nine months. Then finally I developed chronic back pain & collapsed as I couldn’t walk - was taken to A & E. I have churg Strauss. I had some lung involvement & peripheral nerve damage resulting in footdrop.
Losing voice and sounding as if sore throat. Even though didn’t have sore throat. Nasal crusting.
Hi I had electric sensations ,numbness in arms and legs ,tiredness and pain all over .
Sinus problems, then hearing loss, then bloodshot eyes, then aching limbs
Also - Painful muscles, difficulty with balance, numbness in left lower leg, blood blisters under tongue and in throat and a dry wracking cough
Interesting question. where to begin?
2004-2009: Extreme stress both at work and home
2009: Viral infection which was difficult to shake off. Developed weak knee joints after walking 4km. Treated by physiology exercise
2012 Extreme fatigue and joint aches. Developed lower leg ulcers.
2013 Finally diagnosed with Rheumatoid Vasculitis with mono-neuritis multiplex and myocarditis
It's very useful to see the timeline for people to see. Very wise indeed.
I wondered if it would be useful to add the name of the hospital where V was finally found and diagnosed, too. (and poss. hospital where you were dismissed, not for "name and shame" type of petty thing. Just to see the general "trend".
Other meant: numbness of feet and nightsweats. Keith
Breathing difficulties (1st Tracheotomy)
I also had gut problems in that micro bleeds had caused my gut to glue itself together and to the interior abdominal membranes/walls with scar tissue. Misdiagnosed as appendicitis.
My first symptoms were three strokes in three weeks.
Some of my symptoms seemed so strange that I didn’t take them to the doctor. e.g. sore scalp, couldn’t chew, hands that froze suddenly, waking up in the night to shake my arms awake over the edge of the bed, strange broken up vision (I took that to the optician who said my eyes were normal, take some paracetamol and stop worrying).
The ones that I did take to the doctor didn’t seem to ring any alarm bells. So upper body pain that meant I couldn’t get dressed, hang out washing, wash my hair, read a heavy book, do up a seat belt etc was ‘fibromyalgia, not much that we can do about that’ . My lack of pulses in my arms and shoulders was a bit strange, but didn’t add up, and neither did the dizzy spells when I tried to get cat food from the top shelf at the supermarket. Many women will be familiar with the dismissal of nightsweats as it’s only your age!
I’m not complaining about any individual GP - mine have been great since I was diagnosed - but about a system that means it’s difficult to see the same person twice, that relies on machines and not touch, and doesn’t give enough time for the doctors to do extra research.
I had a dry cough, night sweats, nausea and fatigue. Joint pain, muscle pain numbness and pins and needles developed over the next year.
Joint pain and fatigue initally then joint swelling and night sweats
I had sinus problems for months before hearing loss and subglottic stenosis. Admitted to hospital with stridor.
Extensive rash,high temperature, sinus and face pain, and generally extremely unwell.
First symptoms that were recognised as being giant cell arteritis were headache, cough and stomach ache. The first definitive symptoms were there two years before the above and they were temporal artery enlarged and a band of sensitivity that ran across my scalp from one ear to the other. Interestingly for 10 years or more before I had eye problems - aching and soreness this disappeared once I started on steroids and as been absent for the five plus years since diagnosis
Lungs heaviness then crushing in middle of chest unable to breathe unable to stand collapse
Had felt unwell for many months. Sinus problems. Severe gum bleeding. A lot of aches and pains and then had an aneurysm behind my knee which ruptured.
Unexplained blood and protein in urine and treated for UTIs ridiculous amount of times for two years before with antibiotics with no effect
First symptom was sinusitis and flu like. Eventually diagnosed as GPA.
Swollen neck glands
I had very blocked nasal passages for about 2+ years, then the feelings of being 'strangely tired' and not quite right.
Flu symptoms ( without the cold! ) night and day sweats. Total physical and emotional exhaustion. Short of breath after the slightest exertion. List could go on and on ... Thought it was the menopause, how wrong was I 😩.
Rhinitis wheeze
Confusion memory loss manic behaviour
Constant shaking , unable to walk
pins and needles in my feet - full blown CSS over a weekend
Other:chest infections, loss of voice, sinusitis
Recurrent chest infections and sinusitis
Swollen toes and partial insomnia
Nose bleeds, crusty nose on one side, eye socket pain, headaches, constant eye watering....
Then followed by fatigue, double vision, heart palpitations, deafness in one ear, greeny brown discharge from nose..
Probably more that I can’t recall though
Numbness in face (and shortly after hands and feet)
Joint stiffness without pain. (it was PMR). Headache when GCA began).
I had nerve pain I’m hands and feet leading to drop foot and lack of use in my hands
Excruciating headache -visited A&E sent home twice saying it was migrane - 3rd visit they couldn't control pain so was kept in
I have PMR and GCA. The GCA came with horrendous head pain and temple pain.
March 29, 2017: Sudden weight on chest, dry coughing, weak, light fever, tired and always short of breath with a very hard time breathing. For 4 months doctors thought I had pneumonia (100% Right Lung/75% Left Lung) and treated with antibiotics for recurrence, no bloodwork or hospitalization. Ended up in Hospital July 25, 2017, with Stage 5 Kidney Failure, eGFR 10, Creatinine 4.75; blood in lungs and scarring. Doctors say I never had pneumonia, but it was ANCA and GOODPASTURES Vasculitis'. Cytoxan 1000mg and now CellCept 2000mg. GOODPASTURES is in remission, but ANCA is still Positive.
In ICU 15 days, developed few sores on bottom, sore in nose, rash on stomach, still had dry cough, only coughed blood one time in the first whole 4 months of sickness, hands/fingers would freeze up, hands started shaking but could have been Hospital Treatment 500mg of Prednisone/1000mg Cytoxan/Plasmapheresis 14 Days, and a couple knuckles on my hands just hurt now and are swollen. Sometimes I get little pokey feelings in my head, and that darned constipation. It wasn't pneumonia for 4 months like some doctors thought, but ANCA and GOODPASTURES Vasculitis' attacking my Lungs and my Kidneys'
I had tiredness and occasional bad night sweats before I got GCA fully
Unusual headache at temples and scalp tenderness
Unusual headache in temples and scalp tenderness
Unusual headache in temples and scalp tenderness
Before above symptoms developed cough approximately 8 years before. Got worse and worse, GP diagnosed adult onset asthma. Got so bad I was on and off steroid tablets to try and control. Often at GP for nebuliser. Symptoms above then developed including g hearing loss, admission to local hospital for breathing difficulties, collapsed lung.
Coughing up blood.
I have MPA. Had two lung hemorrhages and diagnosis after thesr episodes but looking back I think I have had flares for years as very breathless and persistant cough and feeling that I was asthmatic or was suffering with allergies.
Itching, inflammation, night sweating and coughing
Shoulders hurting. Anaemia. Could not raise arms up. Generally felt awful. Swearing a lot. So e weight loss. Very high ESR & CRP. Turned out to be TAK. Took a few years to diagnose.
Sweating a lot I mean, day and night. Although u did a bit of swearing too lol.
Bad allergies, asthma, constant stuffy runny nose, breathing issues, several bouts with Pneumonia, flu-like symptoms, then a horrible rash!
blood splinters under nails, coughing up clots of blood, Purpura on pressure points, severe joint pain and extreme Fatigue loss of sensation in feet.
Sinusitis
No symptoms whatsoever but annual lab work for thyroid detected raised creatinine levels. Diagnosed via kidney biopsy four weeks later, with MPA. Kidney function was at 15%; function has since risen to about 25-30% but systemic issues are very problematic and ultimately led to permanent disability.
Feeling Sickly and appetite loss.
Numbness in my feet and spots on the bottom of my leg and foot,Diagnosed with EGPA in 2013
I did have aching painful joints, but as I also have RA I couldn't be sure if Vasculitis made matters worse. Also had sinus problems and nose bleeds, nose bleeds, but had these before diagnosis..
Other symptoms: severe cough, loss of voice, coughing up blood, bleeding from bowel, gout, high blood pressure, sudden decline in kidney function, blood and protein in urine.
I was being treated for psoriasis at the skin clinic at our local hospital on legs and other parts of the body when i started getting leg ulcers. It was only after searching the web that would it be be better to have a skin biopsy which she was not very happy about. Boy was it painful, but, it did turn out to be vasculitis. I was prescribed cream and the district nurse to come in and dress my legs. She said there was nothing more she could do. That was about 7 years ago and although i had a remission for about 18 months, it came back with the ulcers except more ulcers and not so much rash just red hot legs and i have lost count of how many antibionics i have been on as the ulcers always come with an infection. i still do not know what type of vasculitiss i have as i have so many other health problems.
Repeated vomiting and near constant vertigo. Soon after followed by a whole rash of other things, but those were the starters of my cerebral/CNS vasculitis in 1994.
My son had an eyelid problem that had not passed for two months before. Then, in just two weeks, he became inappetent and started to lose weight and always had little fever. After two episodes of vomiting so much weariness and night sweat, the doctor found an otitis that did not even pass after a week of antibiotic. In the emergency room, he was diagnosed with acute renal failure, and after three days of hospitalization it was found to be caused by MPA
I had a persistent cough (xray revealed an abnormal mass in my lung). I also had an issue with my right eye - ptosis where the eyelid was half closed. Other symptoms above started as the medics were trying to find a cause. Severe headaches, jaw ache, earache, crusting of my nose.
My ears felt blocked, followed by really bad earache and then loss of hearing. Swollen lacrimal glands and extreme fatigue.
Leg calf muscle pain like cramp
Mine was a cough that i put down to the Air Conditioning, then turned into what they thought may be Bronchitis or Pleurisy until X-ray proved negative.
Some numbness in mouth and scalp and very bad facial and head pain as well as really bad nasal congestion.
Chest problems/asthma
Splinter haemorrhages and general malaise
Feel many symptoms were historically unlinked. Agree that professional knowledge is majorly weak in this area.
My primary physician said she only remembers 1 case during med school. The odds of seeing the same ER physician on the 2 episodes of head pain was unique and that he had diagnostic skills to suspect GCA was remarkable. That I had a background in Phys Ed and previously married to an Internist (deceased) and dealing with arthritis for years, I might have been less aggressive in my quest for answers.
Saw the following over the years: Neurology, Ophthalmology, Pulmonology, Cardiology, Dentist, Orthopedics, ENT, Endocrinology, Urology. Feel that the issues dealt with and their consequences may have been related to the underlying vascular effects.
Sinus pain and cough
I also on two previous occasions over a couple of years suffered with severe upper back pain, I think now that this could have been the start of the eventual lung involvement that showed up after biopsy and diagnosis to be granulomatosis? (unsure of spelling) that was picked up on xrays later!
swollen ankles/ painful muscles/ breathlessness/ loss of appetite /weight loss
My symptoms were a dry hacking cough, water retention & anaemia.
I had all of these but aching joints, nose bleeds & dry eyes came first. The last was hearing loss, that's when the diagnosis became clearer.
Crushing headaches which went on for hours and sometimes days.
Have GCA, first symptoms were a headache that wouldn't shift with usual painkillers and jaw claudication. Nothing else until a biopsy.
Bloodshot eyes prior to extreme nasal congestion
2 years of unexplained sinus problems, which was constantly treated with antibiotics. Lost my hearing for 6 months and I kept presenting myself at ENT in sometimes severe pain from sinuses, but was repeatedly dismissed with yet another round of antibiotics. Had a cough for 6 weeks, so went to the doctor (because the advert tells you too!), but dismissed as nothing, even though said was keeping me awake at night. Finally a small purple mark appeared on foot, couple with symptoms becoming more pronounced my husband accompanied me to the GP. Although again given antibiotics, the GP took a blood test, which led to different antibiotics. Obviously they didn’t work so went back to GP was told they couldn’t do anything for me and to go to A&E; by this time could barely move my husband had to help me stand, get out of bed etc. Went to A&E, decided would give me an op to clear out my sinuses; however, once in they couldn’t proceed as my head was full of blood. Even then and that I had started coughing up blood they discharged me after a week! Luckily one of the senior doctors had some alarm bells and booked me to see a rheumatologist a week later, where he took one look at me and my X-rays (70% mass on both lungs) and admitted me, but took a further week to diagnose Wegeners.
Rash on both legs all joints extremely painful, mobility restricted.
Recurrent chest infections with rashes and arthritic joints. Not fun.
I had so many of things,lspoke with you last december, and things have been sorted out now,lsee proffser Augusto here at the Larry hospital at Angers.lhad five days in hospital last dec, for lots of tests ,which said l had relapsed again so l had more Rituxamab and Dr Augusto stopped theMMF .l now take predisonole antibiotics and a few other things , lwas at Angers hospital monday, and lam now in remission once more. l go for another Dexa next month,so all is great at the moment, just wanted to say thank you for your concern when l phoned you both last december. P.S lhave MPA.
Routine annual blood test for coronary heart disease (following by-pass surgery nine years previously) showed reduced kidney function. GP referred me to renal specialist and had biopsy, which resulted in referral to vasculitis specialist.
In the meantime developed a rash on my leg, but as this was located around the wound where a vein had been removed for the heart by-pass I assumed it something to do with this. As it was neither painful nor irritating, I did nothing about it. However when the vasculitis consultant saw it she said it confirmed the biopsy result.
Constant tiredness and severe pain in lower legs. Went on for about 18 months before seeing Specialist.
Pains in shoulders and legs could hardly dress myself or get up from chair without excruciating pain - treated for PMR for a year then PET scan showed Vasculitis GCA /PMR just in time I think
I can only answer this question 'Retrospectively', in other words 'Looking Back'. My eye problems, that manifest only a few weeks before my collapse, were being treated at Morefields Hospital. No one, absolutely Nobody, had made a Vasculitis Connection at this stage. My Diagnosis was, actually made, in University College Hospital- whilst I was unconscious- some weeks later. I am told that it was a 'Visiting Doctor' who made to Diagnosis.
Never ending cough and flitting joint pain. Gp said it was rsi!
Respiratory problems - a chesty cough that wouldn't clear. Bi-lateral pleural effusions diagnosed and drained.
Other was repeated chest infections that would not clear up
Stroke, right foot turned inwards
Sept. 2017 went to GP with a rash on my shin, diagnosed as cellulitis, treated with antibiotics (didn’t work), rash got worse and developed into ulcers, which I still have and have gone from almost better to getting worse so back on AB’s and steroids. Biopsy came back as leukocyclastic vasculitis. Having read the comments here I realise that I also had scalp tenderness.
Severe nosebleeds for approx 9mmonths, accompanied by joint pain and fatigue. Recurrent chest infections. .
Nose Collpse approx 2 months prior to being taken seriously by Gp
My GPA started with ears feeling blocked for a few weeks then a dry hacking cough that wouldn’t go away nasal crusting my gp said viral infection... I wish
I am diagnosed EGPA, I had asthma full-blown at age 18, then recently at age 48, began having odd symptoms including more asthma flares requiring urgent/emergency care, extreme fatigue, chest pain (pneumonia), and then sudden and severe lower leg pain in both legs. The last symptom took me to ER, and then diagnosis Dec 2016 (after months of other tests). Confirmed with biopsy of leg tissue (muscle/nerve) showing eosinophils and granulomas, blood results of extremely high eosinophils, and chest x-rays showing "nodules".
At first blocked sinuses, then with transient joint pain followed by full on joint pain and hearing loss
Asthma and cough
As well as the voted symptoms l had the most horrendous headache
I had sinus problems with my ears increasingly bad all during the month of July. Three different ENTS did absolutely nothing for me. Then on August 15, mild tingling in fingers. August 17, sudden bad feelings in legs and hands, and paralysis: could not walk. That was what led to a diagnosis, on August 31.
Bad ears, sinusitis, for two months. Paralysis in legs from a sudden neuropathy led to hospital and diagnosis of Wegener's. Retuxamab saved my life.
Have ticked the boxes John but not sure if you want written? Sinusitis, bleeding nose and rash.
Cough, decreasing kidney function as well as tiredness
Started of with sinus trouble then breathlessness and a husky voice and stomach pain
