How long did it take from your 1st visit to ... - Vasculitis UK
How long did it take from your 1st visit to the GP complaining of symptoms to getting a proper diagnosis & treatment. Please comment too.
John_MillsVolunteer211 VotersPlease select one:
Saw a lot of different specialists on the way! Somehow none of them seemed able to connect the dots and send me to someone more likely to have the right answer. Even when I paid to go and see an experienced rheumatologist. They just said I wasn’t suffering from their particular speciality.
GP prescribed Pred and protective meds immediately. Seen by Rheumatologist 2 days later on fast track programme. (Prof Dasgupta, Southend). Dx was GCA. Unfortunately it wasn’t until heart attack a year later that dx was changed to LVV/TAK So although dx and treatment was very fast, it wasn’t quite right
Was taken suddenly very ill 13.1.18, straight to 60mg steroids, first Rhemi (private) 30.1.18, then NHS 4.2.18 due to severity of ill ness, started cyclophosphamide on 6.2.18. Saved my life
After 9 years of decline my GP proposed CBT for anxiety. I arranged private consultations for all the symptoms and was diagnosed with AF and Vasculitis within a month. Sadly my GPs have no knowledge and less interest in Vasculitis. Thank heavens for Professor Jayne and Mr and Mrs Mills!
Despite text book symptoms for PMR apart from raised blood markers (although they were raised for me they remained "within normal range") I was never asked by the GP about the cardinal signs of GCA which I did actually have but I didn't know what I know now! But even the rheumies I saw were no help.
First real attack 40 years ago told it was recurring virus over the years . Really very ill lost lots if weight locum gp sent me to specialist , two years later l got a diagnosis and treatment
Repeatedly went to the doctors and to ENT dept for sinus infections, which kept getting worse and more frequent. I often felt dismissed and as someone who was being a pain. I couldn’t understand why I felt so bad, but as no one really acknowledged this I thought it was all in my head! It is because I was repeatedly ignored and misdiagnosed that first I got into a critical condition and have been left still quite scarred by Vasculitis; this has greatly affected my life, I have yet been unable to return to work, limited in how far I can walk, limited in how far I can drive, in fact limited in how much of anything g I can do! I remain hopeful, because you have to, but it has been a huge adjustment, emotionally, financially. So while I am grateful that my life was saved by a wonderful rheumatologist I am angry at the doctors who were so dismissive of me.
I was caught by accident really, had been twice to emmergency doctor with "an ear infection" and given antibiotics with no improvement. Went to give blood after wirk 1 day and was refused, nurse came to see me and asked if I felt tired etc which I did but just thought it was work etc. He sajd looking at my results it was a wonder I was standing.....said I should be on my hands and knees! Wrote me a letter and told me to take it to my GP the same day. GP then referred me to hospital where I had lots of checks before they saud they couldn't find Cancer so passed me to ENT, they did many tests then referred me to QMC in Notts to ENT, after more tests 1 young doctor said he had an idea what it could be but had to refer me to Rheumatology where I was put under the care of Dr Peter Lanyon who after more tests gave me the diagnosis of Vasculitis GPA.
By now I had lost over 4 stone and was nearly deaf, they started me on quite a high dose of Pred 80mg plus other things then I started on Cyclophoshamide infusions.
I had 9 of these but before my 10th I was blue lighted back to A and E as it was hard and painfull to breath, even though I explained my circumstances and they scanned me and saw a dark cloud on my chest they sent me away with antibiotics!
A few days later I went for my 10th cyclo but they said I was too ill for it and scanned me again and saw the dark cloud, I was then admitted under cardiology for a pericardial effusion which was very unpleasant to drain off over a litre and half of dark blood like fluid from the cavity round my heart and lungs. After this they suspected kidney involvement and upped my pred again and I started on Rituximab infusions.
I managed to taper off Pred a year ago but felt really bad, tests revealef my adrenal glands not working after all the Pred so now on Hydrocortisone for life. Lots of random aches and pains plus Peripheral Neuropathy in my feet and lower legs as well.....not sure if this was from the disease or the drugs. Certainly a disease that just keeps on giving!!
Hi , I had cerebral Vasculitis it to caused many problems peripheral neuropathy, can’t walk very far unfortunately for me it’s been 10yrs & it’s still giving iv been on pred for the entire time down to 3mg can’t seem to get any lower because things start to go wonky , I’m now on mycophenolate that’s an awful drug not getting on at all , my daughter also has Vasculitis a different type to me & she did go deaf her life as distorted by this she also huge amount of weight & was deteriorating rapidly while they were trying to find out why she was so poorly , so I now exactly how you’re feeling .
Saw the GP on and off for just over a year with all sorts of different symptoms but was fobbed off with some of the most bizarre diagnosis I’ve heard. After about a year of deteriorating I saw a GP that had just finished a Rheumatology rotation & he made me an emergency referral to a Rheumatologist. Once there, she suspected Churg-Strauss but after testing it turned out to be GPA.
Initial presentation ophthalmologist no diagnosis
Neurologist no diagnosis
Gastroenterologist no diagnosis
Eventually spoke to John Mills v helpful seen in London received diagnosis but not properly treated for 2 years until saw Prof Jayne. Grateful thanks to vasculitis uk and Prof Jayne or I would not be here today.
Believe it or not 1 week from visit to docs to diagnosis! Amazing and saved me froM dialysis
Before I was diagnosed with Limited vasculitis , I had been treated by my ENT department with sinusitis and Allergies, until I demanded a biopsy of my nose, and whilst waiting for these results I woke up one morning to find my nose had collapsed in the middle. This confirmed my eventual diagnosis of limited vasculitis.
You know my story from the Vifor website project. In summary - at 2013 routine annual review GP for coronary heart disease, blood test showed loss of kidney function. To see renal consultant, identify as ANCA+ve, do biopsy and confirm vasculitis took ten months - simply a function of the pace (or lack of it) that the NHS worked. Had I known at the time that the position was potentially serious I would have kicked up a fuss, but I didn't as I'd never heard of vasculitis. Once diagnosed I was seen by Prof. Alan Salama's team and treated very quickly, with excellent results which continue to this day. Best wishes to you and Susan, and thanks for all the work you do for us.
I meant to add it took 2 years before diagnosis by that time I was deaf in one ear, had tinitus in both ears and damage behind my eyes, and saddle nose deformity.
It would have been much longer if left to my GP who wanted to just keep prescribing endless antibiotics. Fortunately for me my wife is an Emergency Nurse Practitioner at our local hospital A&E department and she was able to get me seen there by the rheumatology consultant. Although he couldn’t diagnose the condition himself, he at least sent blood and biopsy samples to other hospitals and as a result I was transferred to St.Thomas in London who made the diagnosis of GPA and started treatment.
Over 3 years. Initially I was misdiagnosed with ME, and had to fight really hard to get reassessed as my symptom pattern changed to look more like MS. Over 3 years after first presentation I was diagnosed with primary cerebral vasculitis, and finally started life saving treatment. Even then the diagnosis was very difficult, with no positive blood tests (not even inflammation markers) or other definitive positive tests other than a MRI which showed brain inflammation and lesions, but could have multiple explanations, hence more testing.
I already had a diagnosis of M.E. of 12-years duration when I got extremely sick following a viral infection in 2001. Despite having entirely new symptoms, including recurrent rashes, I was told the M.E. , which had been in remission until then, had recurred and that I also had fibromyalgia. I never thought this was an accurate, or at least not a complete diagnosis of what was wrong with me. I had tested positive initially for rheumatoid factors and strongly suspected I had some kind of autoimmune process going on. I repeatedly told hospital doctors and G.P.s of my concerns, but was told I did not have heumatoid arthritis and was dealt with largely in a chronic fatigue clinic. Hence, I was treated (wrongly) as someone whose illness was largely psychological. There was little willingness to think outside my labels, conduct further tests or consider a differential diagnosis, despite my increasing and new symptoms. Eventually I saw a new immunologist at a different hospital following a bout of viral meningitis in 2013. In 2019, I was referred by him to a rheumatologist because my C3 and C4 levels (part of the immune system) were consistently on the low side and I was still getting rashes, severe headaches as well as struggling to walk at all. The rheumatologist I saw agreed to run further blood tests for autoimmunity, for which I am very grateful. However, he cautioned me that he didn't expect to find anything wrong on the tests, that he wouldn't need to see me again and that fibromyalgia was largely psychological in origin. However, the blood tests showed that I had an anti-C1q antibody level of 132 ( normal range 1-15). On the basis of this test alongside my symptoms, I was diagnosed with urticarial vasculitis syndrome. I'm waiting to see a vasculitis specialist in two weeks and to start treatment. I'm finding it hard to process all of this, what it means and how this illness very nearly got missed again. It has been such a difficult struggle to get here. I don't know whether I can be helped by treatment, whether too much damage has been done as I have so many long-standing and debilitating symptoms. I cannot work, am in pain constantly, i have lost two careers and my whole adult life so far to illness. My confidence is shaken to the core. But I'm so relieved that I have found this site, am grateful to John and Susan and all those who contribute to it, and at least now have a blood test result that shows this is not in my mind or a personality trait.
Tha gp in saw also woks p/t as a hospital dermatologist and he recognised the rash right away! I was in hospital by 4pm that day! Had skin biopsy that day and kidney biopsy within a month.
Diagnosis took more than 8 years. Worst part was being made to feel like a hypochondriac during that time.
My condition had an unusual presentation.The start was so memorable to me that I can date it to 1 Dec 2014 I felt the condition hit me like a bolt of lightening .I had at that time two diagnosed autoimmune conditions already and a long history of rheumatological symptoms this didn't help I had previously been misdiagnosed with fibromyalgia at a point when I believe the condition was maybe starting to develop, this after my hepatologist sent be to rheumatology with a query vasculitis perhaps he should be a rheumatologist!Along the route from this day to diagnosis I had further misdiagnosis of chest infection! Gout and I know there's something wrong with you but I don't know what it is.Overall I saw 5 rheumatologists my wonderful GP kept referring me back as knowing me well she knew there was something wrong.Thd final referral was delayed as I was scared of being sent away having been misdiagnosed with fibromyalgia so I didn't ask to go back until I was desperate! Unfortunately it then took 2 1/2 years longer to finally see the consultant who diagnosed me.My ultimate diagnosis is MPO, ANCA vasculitis.At this point I was feeling awful and also had to be checked for lymphoma.Now I am on immunosuppressant treatment my life is transformed but the delay in diagnosis cost me my career as I had become to ill to work during the time I was waiting to get help.My message to rheumatologist would be listen to your patient most likely if they tell you they are feeling awful and in a lot of pain they are.Dont dismiss a patient with fibromyalgia unless you're certain .And finally a negative blood test only means what you're testing for isn't there not nothing is there! I was tested repeatedly I had a high CRP, but antibody tests I was told were negative when infact ANCA Mpo was positive but I hadn't been tested for it.
I do not think my GP would have ever diagnosed my Vasculitis from the early symptoms I was presenting with. It was the coughing up copious blood which set the alarm bells ringing with both my GP and A&E.
It took some time even although my consultant was very sure what it was they debated me for a while ! I actually had to complain they didnt take me into hospital just left untreated for months . It was actually a blessing as I started to learn reiki ,meditation and all the other stuff I get up to 😂 as I was left to my own devices . It taught me to take responsibility for myself and lead to wonderful men Dr Joe Dispenza and Dr David Hamilton
Still not got a diagnosis but been having symptoms for almost 2 years, now awaiting ENT,
Was referred to hospital by GP within 3 months although GP didn’t know which department to refer me to. Was sent from one dept to another and was finally put on wait and watch. GP referred me to rheumatologist who eventually sent me to infectious disease doc at addenbrookes who diagnosed MPA. Rheumatologist wouldn’t accept this as his specialist interest is Vasculitis. He eventually referred me on to nephrology who did a kidney biopsy which shows positive. Took 19 months to reach this stage.
I was first diagnosed needing sinus surgery was waiting on the op and had pre op done then had a few gp appointments for severe joint pain and weight loss got accused by one gp of wasting an emergency appointment a few days later ended up in a&e with bleeding lungs failing kidneys never had the sinus surgery wasn’t required
Hi russellk3 , please can I ask what made them all think you needed sinus surgery?
As I'm 'of an age' most of my symptoms were put down to menopause. Long term sinusitis, crushing lethargy, aches and pains (even though I'd played hockey and tennis for years). Then, over the 12 months to diagnosis - recurrent chest infections, adult onset asthma, whooping cough, frozen shoulder, nosebleeds, pain under heels that bad I couldn't walk, various tummy troubles. GP saw each problem in isolation, which I think is what a lot of people find on their journey to diagnosis.
Lastly, in May 19 one of my knuckles swelled up. GP referred me to rheumatology and took bloods the same day. I was admitted to hospital on the 6th of Aug with suspected gastritis and they diagnosed pneumonia. Sent home on the 8th, but called in again on the 9th by rheumatology, who said I had to come in for extended tests. Was diagnosed on the 10th. CRP was 125, 3+ both blood and protein in urine, kidney function dropping. Started cyclo 5 days later after a troubled kidney biopsy (scar tissue had already formed, making it hard to get a sample).
I was admitted to A&E after family found me unresponsive in bed.
I was diagnosed with CNS vasculitis and also systemic vasculitis I also suffer with mixed connective tissue disease very similar to Lupus which I was diagnosed with in 2006. I had breast cancer in 2018 , in 2014 I suffered a haemorrage in my lungs and spent 59 days in a induced coma .The damage to my lungs as now resulted in me having COPD!! Then in 2018 I was taken by ambulance after suffering months of headaches and feeling unwell to hospital and being diagnosed with CNS & systemic vasculitis OH and just to top it of lesions on my brain !!!!
It was certainly a long time from my initial request for an investigation to a brain biopsy and a diagnosis of cerebral vasculitis. Without being disrespectful, I'm not sure that they doctors and consultants I initially saw have much idea of vasculitis generally. In all fairness to them the symptoms are very diverse and I'm not sure that they are actually looking for vasculitis itself.
After a year and two hospital admissions, I was eventually rushed to A and E with Angina. It was only then that the insightful cardiologist started to look for a common factor that might explain the range of symptoms I had experienced, many of which had been put down to the divorce I was going through. This was nearly 20 years ago now, and I hope things have changed, thanks to the work you have put in!
I started having extreme pain in Mid May 2018, and went to the GP in June.
He did blood tests and referred to Rheumatologist; I was admitted to hospital 31.10.18 and was diagnosed with Wegener's Granulomatosis (GPA) two days later on 2.11.2018. This was the day I had a lung haemorrhage and nearly died. Very frightening, but I don't think I can blame the doctors; they are under resourced and I had a rare presentation of a rare illness.
Just glad to be alive
I also had a haemorrage in my lungs and was in a induced coma for 59 days it was horrific when I was finally taken out the coma!! Amazing NHS ICU and all the other staff that kept me alive and taught me how to walk talk and just live again !
#Happy2Balive
I wish you all the best .
Hi,
Thanks for your reply. I am glad you are feeling better.
I was on ICU for 23 days and awake for all of them because the doctors did not want to intubate me because I had bleeding lungs. However the staff were very nice to me.
I could not walk at first but managed to get walking a few weeks later and got out of hospital 6 weeks after admission, although I had three re-admissions because of UTIs.
I am not really back to normal and still feel tired, weak and with a lot of vertigo but like you I am happy to be alive and I am looking forward to what I hope will be a more active New Year,
Four visits to GP over 4 weeks although I'd had symptoms (severe hacking cough) for 2.5 months before first GP visit. Only at 4th visit & 3rd GP was I referred to hospital for investigation. GP said she could see that I was very ill but didn't know what with. Tests at local hospital showed kidney function at 12% and I was transferred to Leicester renal unit where GPA affecting kidneys and lungs was diagnosed. That 3rd GP saved my life by referring me to hospital.
I had several different symptoms for months (if not years} but these were not put together to give a diagnosis of EGPA until I developed a vasculitis rash. I had a same day apt with GP who agreed with me that this looked as if it was the case. Immediately rang Rheum dept and I was seen straight away. SpR on duty did a through history and diagnosed EGPA, this was followed by Consultant confirmation and medication.
Fortunately Addenbrookes is my local hospital!
Saw my GP who kept saying it was inflammation of the joints until one day at work I had to go home in so much pain, doctor came out next day and sent me straight to local hospital after 6weeks they decided to send me to the Hallamshire Hospital in Sheffield who after 2 weeks of tests found out what was wrong put me on Cyclphosphamide tablets and Prednisolone and got things under control this was 30yrs ago. I have had 1 flare which has caused many different illnesses and iam now under Addenbrooks Hospital in Camebridge who once again got things under control.
I saw orthopaedics who said Neurological and referred me to Neurosurgeon. After tests I was referred to Neurology who diagnosed straight away but wanted tests. I should have gone back but my mother was taken very ill. I returned 6 months later for treatment. My Neurologist was worried by my absence but started me on treatment immediately. It would have been 6 months at the most otherwise. I have CNSV (Linda)
Had ongoing chest infections (turned out they weren't) and kept losing voice for extended periods of time. After a while, GP gave me a steroid inhaler as suspected they weren't chest infections. Finally referred to Addenrbrooke's ENT - luckily Addenbrooke's is my local hospital so as soon as they looked down my throat, GPA was suspected and everything moved very quickly from there. By the time I got to ENT, my breathing was terrible, couldn't hear, couldn't talk, painful nose and nosebleeds (I thought I'd broken my nose!)
GP organised biopsy, saying. 'I'd be an idiot if I didn't run tests for giant cell artritis'. Result was inconclusive, not anka positiv. Another biopsy = inconclusive. I had an itchy reaction to oromorph that when scratched led to wheels of bruising = diagnosis of GPA.
I had symptoms for ages, but didn’t know it at the time. Mentioned my persistently runny nose in passing. When things got very serious, it was a relief to get diagnosis of GPA.
Persistence from my GP got me into hospital where kidney biopsy confirmed her suspicions. On 1000 mg pred by AV within hours of diagnosis an 3 days to first cycle of chemo. GP saved my life.
After a number of GP visits over a short period of time I suddenly found I could not walk one evening. The next morning I was 'fine' again but went to GP - he organised a blood test. After the results a few days later I was referred to a rheumatologist - fortunately I had private health insurance at the time and was able to see someone in a couple of days. He diagnosed me within 5 minutes - I was hospitalised immediately for 5 days. Started cyclophosphamide - was off work for 3 months followed by 3 months of half days. This was 10.5 years ago although I have flared 5 times - flares are now controlled by Rituximab (or biologic equivalent)
Following several visits to the GP in 2009 and 2010, I visited the GP in August 2010 requesting a referral to a dermatologist for the skin condition I had developed. I saw the dermatologist consultant at the Treatment Centre Nottingham on the 02/09/2010, following a skin biopsy Vasculitis (HUVS) was identified. I was referred to the Renal unit at the Nottingham City Hospital, with Kidney biopsy on the 08/12/2010 which confirmed HUVS, treatment began in early January 2011.
My first symptoms were getting puffed out after walking a hundred yards or so, two days after being fit as a fiddle, and a life long non-smoker. Given an x-ray which showed lungs similar to an emphysema patient. Waited 5 weeks for spirometey, inconclusive. Asked to be referred to chest clinic, which happened several weeks later. Given many blood tests, including looking for anca vasculitis, but further 9/10 weeks before referred to Rheumatology for diagnosis of mpo vasculitis and immediate steroid treatment. Further respiratory tests given, including one which ruled out asthma.
My GP obviously had no idea what I was suffering with for almost 2 years of symptoms consisting of very painful joints and severe back pains. I was being prescribed Ibuprofen 600mg dose three times a day together with Tramadol and I had two morphine patches on in order to continue working. During this time I was also being seen by a Rheumatologist who was also useless! Then during a bout of severe back pain I got sent for an x-ray that picked up shadows in the lung so a biopsy was next. That was confirmed as dry blood cells so still no diagnosis. months later after a visit to the GP he took blood samples, some hours later he rang me at home and instructed me to go straight to A&E for more tests. That led to a Kidney biopsy and then it was confirmed. Wegener's disease and CKD.
I was diagnosed in hospital not by the gp. I was admitted with pneumonia and in 3 weeks diagnosed with gpa.
Saw GP in 2009, got referrals mostly to physiotherapists. In 2012 became seriously ill and hospitalizsed and was diagnosed with Rheumatoid arthritis/vasculitis with Myocarditis and mono-neuritis multiplex in 2013. Since then the GP surgery has identified another patient with Vasculitis thanks to me introducing the doctors there to the Route Map to Vasculitis produced by VUK.
Issues began July 1, 2019. First Dr's visit July 8. Diagnosis and treatment August 30th.
71/2 years!! To diagnose
GP investigated for 3 months. Finally went to A&E because I felt so ill. A Nurse Practitioner diagnosed me within 10 mins, had it confirmed with a blood test and put on pred straightaway. No longer have any confidence in my GP.
My GP did tests but couldn't come up with an answer. I googled my symptoms and it came out as GPA vasculitis but I saw it was a rare disease and dismissed it. I was diagnosed 4 months later after an emergency admission to hospital. I now have wonderful care from two consultants.
9 months of repeated chest/throat/ear infections and painful joints, my GP just kept giving me antibiotics and anti inflammatories. Never once a blood test. Went on holiday to south of France, ended up in intensive care for 6 weeks, 2 of them in a coma. French doctor diagnosed GPA. Care since returning to UK having diagnosis has been excellent but a simple blood test could have saved me this trauma.
Although 6 weeks for a diagnosis sounds really good, in reality it was difficult and almost fatal. I had a nasty cold for a month before going to the GP (now know this was the onset of vasculitis). I went to the GP when I started feeling nauseous and was told I probably had a UTI. Despite the urine analysis being negative for infection the GPs did no other investigations. This continue for 4 weeks with my nausea getting worse and worse to the point where I was bedridden and had lost a stone in weight. I started being sick each evening despite my stomach being empty and my nose started to spot blood. At that point it dawned on me that this was the disease my mother had died from nearly 40 years earlier. With my self diagnosis the GP examined me and saw the dark patches signifying kidney disease and sent me straight to hospital. At that point I only had a 2% kidney function and had developed a heart murmur. With hindsight I should have gone to A&E much earlier or demanded blood tests at the GP surgery but, when you are feeling so rubbish, it's difficult to to be logical!
I apparently had atypical symptoms, only every 10 weeks or so and went to the doctors each time over a year, they lost my sample but did not tell me or ask for another one. Eventually I saw a locum who referred me straight away through my husbands Health insurance to urology and was then referred to Kings renal team and was diagnosed with a week of being seen with MPA and then treated for 2 years with cyclophosphamide and prednisolone. However had already lost 60% of renal function. I was then in remission for nearly 6 years with no medication, monitored by the renal clinic every 3/4/5/months. The vasculitis flared up again and I had retuximab every six months for 2 years and now annually when levels start rising again.
My son had an acute renal failure. They did a biopsy and they realized he had MPA. he stated immediatly tratments. It took 4 days to have e a right answer. I have to say that before to go to ER for the fever, he wasn't so good but not so bad to think he had a serius problem. Vasculitis is difficult to undestand.
First saw my GP with joint pain which moved about from feet and legs to arms and wrists/hands. GP laughed at me and said she had never heard of that. Eventually referred to a rheumatologist who declared I didn't have rheumatoid arthritis. Six months later after losing hearing in both ears I saw an ENT Consultant privately who suspected Wegeners. Admitted to hospital shortly after that and finally diagnosed.
I'm sure loads of people who died before they ever got a diagnosis... Why no "over 10 years"? I often note that people who had skin manifestations got served far quicker as it is visible to see the symptoms whereas if your symptoms were largely invisible and non specific, it's a long, rough journey ahead of you...
It has taken at least 18 years for me to get a diagnosis of vasculitis, although I have urticarial vasculitis syndrome and, at the moment, normal kidney function. I am being more widely investigated now, including for Bechet's syndrome. I had rashes repeatedly throughout this time and it is only in recent years, and under the care of an immunologist initially, that these rashes have been heeded as part of my picture of ongoing ill-health, illness which has largely confined me to my home and bed for the majority of that time. My symptoms were and are multiple and quite severe, but blood tests were considered essentially normal (no raised ESR or CRP). I had been given a diagnosis of M.E. and subsequently also fibromyalgia as set out in my earlier post. I think these labels blocked any wider consideration of what was actually wrong with me. But I do agree with you that the more invisible your symptoms are, the much harder it is to get proper investigation and a proper diagnosis.
My diagnosis was made out of sheer luck. Went in for testing for my thyroid and my raised creatinine levels were detected and the rest, as they say, is history. The kidney biopsy that took place in just under two months confirmed a vasculitis diagnosis: MPA. At the time of diagnosis, my kidney function was at 15% but has increased to nearly 30%.
I continue to struggle with systemic issues, mostly neuropathy and rheumatic pain and I'm currently treated with mycophenolate.
Happy, healthy-as-can-be, New Year!
Michele
I have EGPA. I had 10 years of increasing asthma type symptoms before the acute phase, with a rapid deterioration over 6 months before finally being diagnosed and treatment started.
Saw GP all summer then had a brain haemorrhage and got a diagnosis
I was first diagnosed in 1982 when very little was known. Initially I was just treated symptom by symptom by my GP. It was only when I became really ill and had to call a Dr out on Christmas Day that things started moving faster.
Once in hospital...towards the end of January... the Consultant was excellent and pulled out all the stops to get a diagnosis...about 2 months later! There was no cyclophosphamide then...it was Prednisolone and Azathioprine and physio...all of which worked (for a long while, anyway!)
Had rash on legs and severe joint pain ,treated with increased Piriton with no effect. Eventually paid to see a Dermatologist who thought it may be Vasculitis and reffered me to a . .rheumatologist for ever grateful. Jan 22
Yes very quick after blood tests saw a specialist 6wks later admitted to hospital later that day was in a month cryglobinanemia
It only took so long because I had a holiday booked to my home country of S.Africa. Dr gave strict rota/orders for taking Pred. Saw Neuro on return, who diagnosed GCA.HhOPE THIS POLL WAS ALSO OPEN TO US?
Mine was an acute flu-like presentation with fevers and headache. I was living abroad in Europe at the time. I had so many very unpleasant investigations after the raised markers were found ranging from nasal biopsies to trans-oesophageal echo, to cystoscopy ...to name a few. Even when vasculitis was eventually diagnosed, the type and treatment was uncertain. If I hadn't looked it up and managed it myself...no knows where I would be now....grateful to be off steroids for nearly 4 years with no recurrence so far.
I was diagnosed in 2015 after being sent to a larger city hospital. As I was critical at this stage I was in a coma for a week..ICU for 3weeks and all up in hospital for 5months. I am limited n my walking and suffer fatigue so work is not an option at this stage. It was due to a visiting doctor at my hometown hospital sending me to his colleagues in Christchurch that I survived! I am in New Zealand. 😀
Hi John ,I started with severe sinus infections ,3 antibiotic courses then referral to E.N.T ,Severe pain to head ,face and ears but told no problems could be seen .I insisted on a biopsy or further investigation The e.n.t Dr was also prompted by hematology to test for a.n.c.a .Both biopsy and bloods proved positive for G.P.A this took 6 months before referral to Vasculitis clinics /10 years ago .
My GP referred me to a, so called, expert. For 18 months he was prescribing me Meds. that actually made me worse. It was only after I challenged him for a second opinion that I got referred to a real specialist in London. Who, after 10 minutes, gave me the proper diagnosis. The previous 'expert' has now, thankfully, retired.
New treatment was then started and, although not cured, I am now in a far better place. I have regular check up's and am now, probably, about the best that I can get. Muscle weakness (I used to do the London to Brighton cycle ride - under 4 hours on a mountain bike & then cycle part way back again), breathing issues, extreme tiredness, walking and generally feeling Yuk.
Constantly told by GP nothing wrong with me. When I pushed for referals they were always reluctant. Was told by rheumatologist the referal was non commital.
Had seen rheumatologist 8 years ago with very mild pain and occasionally flare up, basically said to me come back when you feel worse. started to have lots of pain in all joints from January 2020 and was getting worse, first doctor said osteoarthritis, wasn’t convinced, went back to another doctor two weeks later and sent me referral, was seen with in 4 weeks have been on naproxen for a few months as I had a trapped nerve last year, think it bought the rheumatoid arthritis on with the stress of the pain. Have been taking steroids 15mg for three weeks and less pain and reducing dose 2.5mg every two weeks feel like a new woman, have been prescribed hydroxychloroquine as at the moment in the middle of covid-19 pandemic, doctor felt it was one of the safer DMARA to start me on, have been diagnosed with seropositive erosive rheumatoid arthritis, know a bit about this illness as my mother suffers with this as well.
First 2 years was intemitent visits to GP with various symptons and generally unwell this esculated in second 2 years with serious sinus issues, joint pains and rash - each visit tried different anti biotics became seriously ill couldn't eat or get out of bed also visited walk in centre and constantly felt they thought I was a hypochondriac finally felt I couldn't go on so went to A+E within 2 hours the Dr there diagnosed Vasculitus and a kidney function of 4% advising me had I left it another 24 hours I would probably have died
I just collapsed, in London, and was 'Rushed' into Hospital, were My Condition was Diagnosed. With the benefit of Hindsight, I had had 'Trouble' with my eyes.... my Vasculitis 'shows' in my left eye.
AndrewT
I went through private treatment
My usual GP was useless. I paid for a private GP consultation who said, "you need to see a clever doctor." I was referred [privately] to a rheumatologist and a neurologist, both excellent.
Then I got lucky. The private consultants requested a raft of blood tests, including ANCA. When the results came into the surgery my usual GP was away and the tests and results piqued the curiosity of another GP in the practice. He bothered to investigate the results, tentatively diagnosed vasculitis, consulted with the private consultants to confirm.
I saw the GP in the surgery at 10.30 am at the end of October 2019 and could barely walk. I was in hospital in the care of renal consultants the same day. Kidney function had tanked. The day of admission was the only time I had had a urine stick test in several years.
Probably had minor autoimmune symptoms for 10 years, all of which my GP was able to dismiss pretty much out of hand. Last July, had 2 months of classic vasculitis symptoms - fever, headaches, cough, dyspnea, fatigue, major weight loss - before finally ditching GP. Was diagnosed with vasculitis of some sort by hematologist who started referring me around to different specialists. Finally talked to a rheumatologist last week, who diagnosed me with GCA. Doing well on prednisone. We'll see how it goes from there. I'm in the US, though born in the UK.
I had an allergic reaction to either penicillin or carbamazepine in April 2011 which I’d been taking for tingling in my face & mouth. Thankfully, the on call dr was a rheumatology registrar who spotted the signs of lupus. At first, it was thought to be drug induced lupus but in December I was diagnosed with lupus & scleroderma. Treatment was started straight away. Unfortunately the rheumatologist left to work abroad & the replacements, in my opinion, haven’t quite been up to his standard.Although I was diagnosed in 2011, after knowing all the symptoms I now wonder if I’d been suffering for years.
Hi John, I just wanted to thank you for your help on the Vasculitis Helpline today. I can't believe how much time you gave up to understanding my case in detail. I spoke with my GP on the telephone afterwards. I told her about the overlap between my history of atopy and EGPA and she is looking into referring me outside my local NHS Board area. Apparently it involves budgetary problems here in Scotland, so the option of going private is being considered, too. I am due my second Covid jab in early April and we have agreed that I will start on high-dose steroids three weeks later if a consultation with a specialised rheumatologist cannot be arranged before then. At last I feel as if I have a way forward. Thank you.
