If your original diagnosis was subsequently changed , what was the original diagnosis and what was it changed too? ( please state if there was more than one diagnosis )
It would be much appreciated and of great value for your input to this question.
Thank you
Susan ( Trustee of Vasculitis UK )
No my diagnosis didn't change
Originally diagnosed with pmr and then gca was added several months later. But diagnosis was changed to mpa once I developed nephritis and had a kidney biopsy confirming crescentic glomerular damage. Took just a little over a year to sort all this out.
My husband was diagnosed with Wg/GPA and not changed. I know you are asking about a changed diagnosis, but didn't know if you wanted to know about 'no change'.
Thank you Nadine , it's ok to mention 'no change' but we have increasingly noticed that some cases of Vasculitis are misdiagnosed. To give you an example Henochs Schonline Purpura is sometimes misdiagnosed and some of the other small vessel types of Vasculitis too. Eg: CSS WG and MPA.
My wife was Diagnosed with PMR, 4months later it was changed to Vasculitis, still don't know which type
My husband hasn't got a definitive diagnosis yet but rheumy thought GCA but referred him to nephrologist because of protein and blood in his urine. He thought it was more likely to be small vessel arteritis. Still waiting for kidney biopsy results.
Once i was diagnosed with vasculitis.. originalty of diagnosis was not changed.
Navneet Bagga
Yes first I was an " enigma " according to endocrinologist then polymyalgia Rheumatica / fibrommyalgia. Eventually got appointment with Rheumatologist who diagnosed Takayasu vasculitis in 45 minutes of physical examination. Lack of pulses gave it away!!!.
Original diagnosis by GP was Rheumatoid Arthritis with Iritis. First diagnosis by Rheumatologist was Churg-Strauss Syndrome, and final diagnosis by said Rheumatologist was Wegener's.
Originally diagnosed as MPA but changed approximately 6 months later to WG/GPA. Nothing actually said to me but changed on letters sent to GP of which I get copies.
I was originally diagnosed with positive Anca pr3 vasculitis. But more recently I have been feeling poorly so not sure which type I have , going to be referred for CTScan & Neurologist due to lack of power in my leg & arm!
Originally diagnosed with fibromyalgia,CFS and RA in 2004 eventually Takayasus Arteritis in 2014 (had it at least 12yrs if not more)
Original diagnosis was PMR - new rheumy sent me for Pet Scan and Vasculitis GCA was found dangerously high inflammation so caught and treated in time .....
GP started with PMR, but then said that blood tests ruled it out. Then unspecified but 'some form of fibromyalgia - but there's not much we can do about that and sometimes it goes away on its own' (!?)
Private visit to rheumatologist gave me 'two frozen shoulders' and some cortisol injections that did nothing, and then the local Physio thought I'd got the worst shoulders he had ever worked on.
First visit to A and E told me to stop fussing. Second visit to A and E brought a suggestion of adrenal insufficiency. Fourth visit brought the final diagnosis of Takayasus....no pulses and wobbly blood pressure were a bit of a give away. But I'd had no pulses for months, and looking back now, I think the Vasculitis had been rumbling away for a long time.
Changed from GPA to MPA - only within the first week of being diagnosed. My biopsy didn't give clear results so they had a conference about it and decided on MPA not GPA as originally told.
No change still Takayasu
My initial diagnosis was Rheumatoid arthritis, however this was changed to Rheumatoid vasculitis plus the usual add-ons we experience. The initial diagnosis was made because that the rheumatoid factor and nodules were indicated although none of my joints were affected. What are affected are the tendon sheaths (also lubricated by synovial fluid) and particularly where the tendon adjoins the bone. It is also interesting that the nerve line running through this point is also affected causing peripheral neurosis. Strange disease as each patient exhibits different symptoms for the same diagnosis.
Yes. ME diagnosed in 1994. Rediagnosed in 1997 with cerebral vasculitis. Ironically my new consultant isn't totally sure that is right either, after I saw a neurologist a while back (who I had no faith in). But he is happy to carry on with my treatment, cos clearly there is something far wrong 
Original diagnossed with lupus in oct 2012 on my 2nd 3months follow up appointment was told i has WG GPA and my kidney were damage been on treatment with nepholorgy since
No change.
Diagnosed with HSP in 1978 followed by kidney transplant, 30 years of very good health then all sorts of problems, but thankfully kidney function is still good. 35th anniversary of transplant this year! Now being treated with Rituximab for GPA but not much improvement yet.
Was originally diagnosed mpa then gpa started appearing on notes, letters etc. Was only told when I questioned this that it had been changed because I have sinus problems.
I was originally diagnosed with Rheumatoid Arthritis before GPA
Originally diagnosed with orbital myosis then SSV some sort of vasculitis and then relapsing polychondritis.
I was told I had gca, then it changed to tak, yet another change to unspecified vasculitis with aps.
I was originally told i had a virus then when it was decided i had churg strauss that didnt change
Originally diagosed with MS, then after an angiogram showed beading in the brain the diagnosis was changed to cerebral vasculitis.
Diagnosis originally was clinical depression changed to WG after 9 months!
Never changed, always
Initially, diagnosed with autoimmune hepatitis in 2000, followed by ulcerative colitis in 2002 and intermittent keratitis since 2006, when ENT involvement started in 2009, the diagnosis became ANCA-associated vasculitis aka GPA/Wegener's. Constant throughout, regardless of treatment: high c-ANCA and PR3 antibody count.
I was originally diagnosed with a pulmonary embolism at age 17. (turns out they also did blood tests like ESR which were extremely raised at the time and didnt follow it up).
Then last year (age 24) the radiologist thought I could have wergners (I wasn't told this part, I found this part out when I asked for the CT report), which is when they decided to investigate for vasculitis and then they said it was Tak.
After seeing Prof Mason, his team reviewed all my scans I've had to date and concluded I never in fact had a PE, and it's likely to be pulmonary arteritis...
I was originally diagnosed with cutaneous vasculitis. Because I developed the rash, similar to purpura. But it was about six months after the rash had gone, I was rushed into hospital, and I was diagnosed with WG/GPA. That was in November 2012.
Originally diagnosed as an allergy to our old cat, then changed to gout and then ear problems. Finally WG and Sjogrens.
I was originally diagnosed with palindromic rheumatism then 2/3 years later after wider and worsening symptoms diagnosed with Wegeners GPA.
I presented with head pains,scalp tenderness etc. Biopsy negative. Told I did not have GCA as at first suspected. Neuropathic pain diagnosed and prescribed Pregabalin. Pains continued I asked for more tests, had PETCT scan and GCA diagnosed. It wasn't until 4 months later I found out (Registrar just happened to mention it) that my GCA was in my Aorta and Subclavian Arteries. I did some research and 4 months later at my next appointment I queried diagnosis of GCA rather than TAK. Was told I'm too old (58) and not Asian so it can't be TAK, but it didn't matter because the treatment was the same. After this I notice that my blood forms and letters to GP state diagnosis as LVV. So, not sure if diagnosis has changed. Treatment (or lack of it) hasn't.
It seems that it's often easier to say Large Vessel Vasculitis instead of TAK. I was told by Prof Mason that it wasn't possible to have TAK if you were over 50 and not Asian....but I also read somewhere that TAK can hang around at a low level for a long time and then flare up and cause problems. I'm fairly certain that that is what happened to me, so if the disease can start quite early without a lot of symptoms the cut off at 50 seems a bit pointless. But a lot of the damage is caused internally and unnoticed, so the starting time (and the patients age) seem even more arbitrary.
1yr ago had and still have anca p antibodies, maybe mpa, pmr, ESR and CRP raised all the time, steroids after 3 days pain completely gone, then told no I haven't got vasculitis or pmr, still waiting for an answer.
I had a very interesting diagnostic journey. It started with they didn't know, then ? PMR/GCA, then Ankylosing spondylitis, then Lupus, then Behcets Syndrome. Along the way I was tested for syphilis ( without my consent ) Dr's thought I was anorexic, I was tested for HIV and then my diagnosis was " significantly psychological/ complex psychosomatic disorder" which I refused to accept.
With the help of my excellent GP and the support of my husband I then preceded to travel all over the UK seeing Consultants and searching for answers, an expensive process!
Now my diagnosis is definitely Spondyloarthropathy ( an atypical form ), with some features of Behcets Syndrome. The problem I have is not everyone agrees with this, I have been told recently that I have mixed connective tissue disease with a Spondyloarthropathy " flavour ". I have an inflamed, dilated thoracic ascending aorta and have developed a rare form of dystonia called mieges's syndrome.
These days I am just grateful to be " believed " and that I am being treated with biologics, Infliximab infusions.
I suppose I just wanted to say that the answers and treatment are out there for all of us. Unfortunately that may mean asking a lot of awkward questions and pushing for second opinions but the VUK Helpline can support you through it. If you feel that your diagnosis and treatment are wrong then please get in touch.
Once the diagnosis was made (GPA / WG) it has not changed
On first consultation it was felt I had CSS, but on subsequent consultations WG was put forward. Currently it is stated as ANCA related I believe.
My original diagnosis was some kind of non specific inflammatory disorder or arthritis, they also thought fibromyalgia. They had no idea, in all honesty what it was. A couple of years later after many trips to hospital it was diagnosed as TAK by accident. I insisted that they get my blood pressure as no one had been able up get it. They found after using a manual blood pressure machine that I had no pulses in arms. That caused a lot of consternation with the staff. The doctor checked me and then diagnosed the TAK. By this time, I had severe damage to both aortas and in other places. They told me disease was so rare they never usually considered it. I had been back and for for about 5 years. 😠 Just because it is rare does not mean it dosen't happen to people. I was too shocked at the time to be mad, but I am mad now lol. To make it worse, over the period when I was ill, prior to diagnosis, I was seen by 3 separate hospitals and different GP's and none of them picked it up themselves.
Dear Susan,
I get the 'feeling' that I've answered this before somewhere but cannot find a reply here. My diagnosis has changed, sort of, in that I didn't really have one to begin with-'Uncategorised Vasculitis', with a number of 'overlapping Strains', I think. Now it is an 'Uncategorised ANCA-type Vasculitis', with four, or five 'overlapping Strains'. Is that Change? If so not much of one!
In any event give my 'Warmest Regards', to John please.
Enjoy the summer (fat chance of that)
AndrewT
cutaneous polyarteritis nodosa to polyarteritis nodosa. Just met with a vasculitis specialist today.
I was diagnosed in1982 with PAN. This was later..in 2007 after a flare up...changed to CSS.
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