I have read on this site that some people have waited years for a diagnosis of vasculitis, therefore a lot of damage must have been done before they were treated with medication, they also must have felt quite unwell.
Diagnosis of Vasculitis: I have read on this... - Vasculitis UK
I was generally unwell for two years before constant cough upper Nasal infections fatigue been the worst.eventually collapsed and was in hospital 5 weeks no diagnoses went home oxygen dependent on 6 week follow up lung biopsy was ordered and was then diagnosed lungs were so badly damaged I will be on oxygen rest of my life.also now heart and liver involvement and steroid induced diebitis
Two years is a long time to feel so ill. I wonder why they didn't order a lung biopsy whilst you were in hospital all that time, especially with a constant cough, it's such a complicated illness to have/diagnose.
I wish you well
Linc, did you get any X Ray on your lungs to begin with? If X Ray comes back 'normal', I take it one won't get a biopsy unless your condition becomes very critical.. It sounds like you were badly let down... We hear this unusually often here except few patients. excellent point, Bowler!! I fully agree with you..
I was relatively lucky as I had flu-like symptoms for 6-12 months prior to diagnosis and the hacking cough and aching joints which wouldn't go away after many courses of antibiotics from GP. Then came the facial rash and Lupus diagnosis, followed by purple rash, painful feet, bleeding sinuses, hoarse voice and positive ANCA blood test etc that changed the diagnosis to vasculitis.
I spent virtually a whole summer in bed, coughing day and night and eventually coughing up blood, with painful sinuses and headaches and aching joints.
Luckily although I feel ill, apart from my lungs I have no major organ involvement and can still work part-time and use an inhaler when required as well as my other meds. If the diagnosis had been possible earlier then I am sure my lungs wouldn't be as they are but hindsight is a wonderful thing and it was a waiting game for the doctors until the other symptoms occurred.
My disease still isn't as controlled as I would like but all things considered I'm lucky.
Seems like an early diagnosis is vital with vasculitis, it's an awful disease to have.
Ally, I doubt you are lucky...but if you wouldn't mind me saying so, Drs treat patients with far more concern if you were ANCA positive whilst patients without this antibodymay spend much longer / a few more years in limbo and may well suffer from prolonged lack of understanding from medical community until you are proven otherwise ( e.g. with cumulative, progressive damage without any treatments over a number of years or death).
I certainly agree that the ANCA positive result was my saviour and to some extent that's where I am lucky, as I don't think my diagnosis would have been as quick without it, in fact the GP stated 'that's what we've beeen waiting for' so I presume they suspected but weren't sure.
As it happens before this they had said I had Lupus due to the facial rash I had, and I was already taking plaquenil (hydroxychloroquine) and that hasn't changed, although as soon as I was ANCA positive they added prednisolone to the mix, which I no longer take.
I sometimes wonder if they hadn't waited for the ANCA positive would the damage to my lungs been halted sooner but it's no good living in the past, this is where I am and I move forward.
Ally, thank you so much. What amazes me most is that you have SLE known for V yet you were still expected to wait until you have got the "definitive proof"? That's so silly... That's true, there are others who are made to wait much longer. But ignorance like this is beyond me. Thank you for sharing.
Within a day daughter of been born, by cesarean section, I had a blocked nose.
It took forever for my milk to come through and I have since learned that both factors of losing blood and a c-section delays the milk production in new mothers but at the time I persevered with my new born to do 'the right thing' and breast feed.
I mentioned to anyone who'd listen that every time I tried my nose started clicking and became blocked.
It was laughed off as weird or a cold. I don't know if it was the start of my problems but it is vivid in my mind.
After about six weeks my nose was constantly blocked and my mouth was very dry...so dry my tongue felt scratchy. I was told I was dehydrated so I drank more water.
At about 8 weeks I was having nose bleeds and went to the GP and was given a spray for rhinitis. This made it worse and my headache started along with tinnitus. I stopped breast feeding to take decongestants.
I went back to the GP and told him I had no smell, no taste and was so embarrassed as I'd had a nose bleed leaning over the carrots in Sainsburys.
I was given antibiotics. They didn't work I went back and was accused of using cocaine and wasting time/appointments.
I returned and saw another GP and got a referral to ENT.
I went to ENT with my 5 month old and was diagnosed with hormonal rhinitis. I was given another 2 sprays, a syringe and recipe for salt solution to rinse my nose.
Things got worse very quickly, I went back to my GP and was given another antibiotic and another referral to ENT was done. The headaches were so bad at this point and the jaw pain unbearable, I was taking 2 paracetamol with 2 ibuprofen every 4 hours.
I was told I had infected sinuses and would probably need them flushing. A CT scan was ordered.
The sinuses were clear so an expedited appointment was refused when my GP requested one again from ENT so I waited 6 hell-ish weeks for the results.
When I was seen, the Registrar explained that there must be something else going on as my sinuses were clear, I asked her to look into my nose and told her my ears were muffled now too, she did and then she left the room, she was gone for ages, I had for the first time someone mention vasculitis in the room next door.
She came back with forms and I was rushed off for an x-ray, blood tests and other pre op screening. I waited a further 2 weeks for a biopsy,
I could hear very little at this point and could barely hold my own head up. My partner was having to take time off work to look after our daughter, so I could sleep all day.
On the day of the biopsy I finally saw the consultant, he was rude and evasive about what was happening. When I awoke from the procedure I was told he couldn't be sure if it was vasculitis and he was referring me to anther department, I was sent home.
I waited a further 2 weeks to see him again. The consultation was very late (despite no one else waiting) and he told me if I didn't like the treatment I should go to another hospital or wait for the referral.
I felt so desperately ill that I thought I might be dying, I was so frightened. I went home to search the internet for a private doctor who specialised in vasculitis, I couldn't find one but I discovered that another hospital not too far away had a vasculitis clinic. I rang the Secretary and was advised how to get a referral. Armed with this information I went to my GP and lied that the ENT had recommended trying this route although they were unable to do the referral my GP could...she would need to speak with her partners but it was likely I'd get my own way, especially when reminded about the cocaine incident.
Within 24 hours I had a phone call from the vasculitis clinic and I was invited to attend for assessment that day. At such short notice, I drove there myself, unable to hear the engine of the car and with my nine month old strapped in the back.
That day I was diagnosed with Wegener's, I had my first steroid infusion and I returned the following day, without my baby, for my first cyclophosphamide and more steroids.
Within days I saw another ENT doctor, at the new hospital, with vasculitis knowledge. They couldn't believe what a state I'd been left in, he hadn't ever seen a nose as bad as mine in his clinic. Very quickly, with the steroids my hearing came back.
I had another biopsy and operation on my nose, the following month, bringing immense relief from the jaw pain and headaches too.
Ironically, a month later, I received a letter for the referral for the other hospital, with an appointment for the month following that...I don't know what would have happened if I'd waited.
It is thought because my diagnosis was delayed the cyclophosphamide and high doses of steroids wasn't enough to abate the symptoms, so I had rituximab too.
I never quite got the the end of your post before my eyes started to cloud over with tears, what an awful ordeal you have been through, and having such a young baby to look after in the process, I really don't know how you coped. Some medics/GPs, etc., you have dealt with in the past must have red faces!!! and It proves that some have no idea about vasculitis, did you get any apologies ?
I feel quite lucky compared to you, as I was already taking Pred. for my GCA/PMR so at least they were helping with the symptoms of WG [ If that's what I have? ] but also masking all my results.
I think all Medics/GPs/ENT's, Vasculitis and Rheumatology clinics etc., should read your post.
I wish you well
Actually Bowler, I don't think my case is particularly harrowing and there are others who have been on the receiving end of far worse neglect. I wrote this to demonstrate that, although the symptoms are glaringly obvious to us now (we know), there is so little common knowledge about vasculitis. So, your symptoms can be blatant and still not recognised, as there are so many others to rule out first. Vasculitis is rare, mimics and can indeed be secondary to other conditions.
Non of my GPs had encountered a patient with WG before. I am now their second one, diagnosed shortly after the other, who I am told is very poorly and requires for more intervention than me.
I had some very good treatment once I was diagnosed, including from my GP and I have come a long way in 2 years with their help.
I did receive an apology from my former ENT consultants, at my insistence. But what I really hope and was the point of my complaint, at the time, is that they learned something from my case.
P.S. I also have a thriving two year old who is my motivation and drive, and for that I'm very lucky and happy.
Wow Raspberry tea, what an experience. I understand the strength it takes to fight the system whilst feeling so unwell, but you are proof that it can be done.
You know that you are doing a big favor, raspberry_tea by raising awareness. I often feel that people with a quick diagnosis wouldn't be able to begin to understand the type of extreme stress from the disease and the inability of medical community over a long period, it has to be said. I am not saying people with a quick diagnosis had an easy time at all (quite the contrary) just to be clear.
The ANCA tests done at both hospitals were positive. Both biopsies were inconclusive for GPA. There was concerns that I had a rare form of cancer, fortunately that was ruled out with the 2nd biopsy...I have been told I would not be here if it had been, so I'm lucky I had the lesser of two evils.
Getting diagnosed is difficult.
Knowing I will be living with the consequences of having a chronic illness is devastating.
Being alive makes it easier to accept.
Thanks for your kind words lancrose.
Raspberry_tea Thank you so much for your inspiring posts. Lots to learn from your remarkably positive thinking!! Wishing you well and take care
i was lucky i had rash on both legs went to drs done blood test then referd me to a spechlist then admitted same day with breathing problems
Sounds like your Dr. was on the ball so to speak and knew it was vasculitis, seems like you had good quick treatment.
I have heard/read about similar stories myself-so consider myself 'lucky', that my condition was 'spotted' early. I am also aware of some people, one in particular-who is a contributor here- who has had a very bad time indeed. This was basically because of bad initial diagnosis/treatment/recognition, of her condition (I clearly do know, far more, than I can say here-I have been taken into her confidence).
I hope your treatment does now improve bowler.
My prayers, and best wishes, are with you.
Thankfully you were treated early, Vasculitis is a nasty disease to have and certainly needs early diagnosis/treatment if possible.
I wish you well
I think part of the problem is the different way that Vasculitis presents. Some patients get very fulminant disease with end organ failure or damage whilst others are unwell for a long time with various symptoms which whilst making life very difficult doesn't cause permanent organ damage.
I have been unwell for 3 years and whilst been treated with prednisolone and immunosupressants along the way no one has been able/ willing to pinpoint exactly what the cause it. My latest diagnosis of possible Behcets has been removed by a Locum Consultant and I am not on any treatment at the moment.
Unfortunately I feel unwell, have developed Blepharospasm which has stopped me working and have abdominal symptoms which I suspect may be Gastroparesis. My big fear now is that these are symptoms of organ damage.
My story is not unique. Unfortunately Dr's are taught " when you hear hoofbeats think horses not Zebras's " It's incredibly difficult being a Zebra.
It took me about 2/3 years to get a diagnosis, and that doesn't seem unusual for a patient with large vessel Vasculitis. We tend to be the ones who have a multitude of tiresome symptoms that are difficult to string together and doctors find it hard to give a definite diagnosis. Mine didn't happen until I was ill enough to warrant ultrasound, MRI and PET scans, and then the inflammation and damage to my arteries showed up clearly. Mind you, two arms with no pulses to be found should have got the doctors going a lot earlier! Damage - I've been lucky and my renal arteries are pretty ok, but the arteries in my arms and shoulders have several blockages, and there is too much scar tissue to ever get them back to normal.
Bronte thank you for sharing. I would be vey curious to know what your symptoms were. I think you have nailed it in your post there. Is that A rheumatologist who were able to order these tests? Sorry to hear about the permanent damages in your main artery.
Do you know, it's really hard to remember! I think the first thing I was definitely treated for was chronic indigestion. I'd had it for years but it started making life really difficult. A barium meal showed nothing so I was put onto PPIs indefinitely. Then my thyroid was a bit low, so I got levothyroxine added in, and drops for my dry eyes. None of them made much difference. It took three or more years for my arms and shoulders to deteriorate slowly; I had to give up swimming, couldn't walk up a decent hill, found it hard to write on the board when teaching, couldn't read a hard back book and really struggled to change pillowcases. I kept going back to the GP as I got to the point where I couldn't do up my bra, or get out of the bath, but no one seemed to be able to think of anything, except a vague label of 'fibromyalgia, so there's not much we can do'. I was referred to a rheumatologist, but he diagnosed two frozen shoulders and gave me cortisone shots that did no good at all. I also saw a Physio who worried and puzzled but didn't work it out - neither did a Bowen technique practitioner. In October 2011 I went to the back end of China, having been told there wasn't really much wrong with me... I finally collapsed three months later (thought it was a stroke, but got a TAK diagnosis instead) and am still haunted by what on earth would have happened if I'd been ill there.
I think cerebral vasculitis is particularly prone to delayed diagnosis, because it can look like so many other conditions. In my case I fell ill in 1994 aged 22 with what looked like ME, and because there are no diagnostic tests for that or treatment I was left to deal with it. Over the next few years my symptoms changed to look more like Multiple Sclerosis, but even then I had to fight to get doctors to reassess my case – they were too willing to accept the original diagnosis. Finally I persuaded a hospital consultant to run a brain scan which showed multiple lesions, and more tests led to my new diagnosis in late 1997. But by then a lot of brain damage had been done, irreversibly. I have heard of many other similar cases where patients initially present looking like ME or chronic fatigue syndrome, or multiple sclerosis, or migraines, and diagnosis can be very slow. It doesn't help that blood tests as well as other tests are often normal for cerebral vasculitis. A significant number of patients pre diagnosis are told - wrongly - that their condition is psychological or psychosomatic. Wrong! And non diagnosis can kill, and at best disable, often severely.
It's very like the situation with Behcets as well Viv. Average time to diagnosis 10 to 12 years and quite often normal bloods and scans!
Unfortunately it is entirely reasonable that doctors are trained not to go zebra-hunting! I had bad fatigue for years before the symptoms that got me rushed to hospital 3 times. I would have self-diagnosed ME for the fatigue. The consultants did their best to diagnose me but there were so many other things my symptoms could have been and those had to be ruled out. On the third admission they saw a pattern in my bloods results and that antibiotics didn't work. When they thought I might have heart failure I was sent to the city hospital where I had even more tests but only the PET scan picked up the Takayasu's. If I'd had the steroids the local consultant was thinking of using for the Crohn's flare I was also enjoying (and that was newly-diagnosed after 30 years because I thought my symptoms were normal!), that would have masked/removed the inflammation shown on the PET and I would not have had a vasculitis diagnosis. Nor could I have self-diagnosed as I don't fit the criteria for TAK. A team of rheumies plus a professor eventually diagnosed LVV based on the PET scan and a newly-arrived rheumy specifically diagnosed TAK.
Scientists (including medics) require evidence; that often takes time to gather. I had a lot of antibiotics in all varieties while they tried to treat the 'sepsis'. That was, in my opinion, entirely correct even though it was steroids that did the trick in the end. If I flare in a similar fashion again, they may have to use antibiotics just in case it really is sepsis this time.
I could call the umpteen suggestions as to what I was suffering 'misdiagnosis' but that would be really unfair on medics who did their level best for me. All the diagnoses (apart from the tentatively and apologetically-offered 'depression?' from a consultant who'd finally run out of ideas) were reasonable.
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