If you have a diagnosis of any of the diffe... - Vasculitis UK
If you have a diagnosis of any of the different types of vasculitis. How long since you were diagnosed? Please leave appropriate comments.
Suzym2uModeratorVasculitis UK138 VotersPlease select one:
I was finally diagnosed in 2007 but it all started with pneumonia in 1998. My GP considered me to be habitual 'worried well' and in 2006 proposed CBT. I was so ill and so angry I decided to hunt privately and went to various consultants for the various symptoms. A dermatologist finally suggested vasculitis. I asked my GP to refer me. My GP did nothing until late March 2007. I was diagnosed in 2007 and arranged to be transferred to Addenbrookes in 2010. Since then I have been constantly monitored and treated. When it became worse in 2013 I was given a year of Cyclophosphamide followed by Azathioprine. Not successful. I was transferred to Rituximab last Christmas and am much improved. The relief of having somewhere to go when things are really bad is immense and I am so grateful for it.
GPA diagnosed August 2004 after going back and forwards to the Dr since June 2004. I ended up been admitted to hospital for 10 days with shortness of breath and losing 2 1/2 stone in 5 weeks. After a load of tests i mentioned i had, had another nosebleed. Next day taken to ENT who before the camera went up my nose said "i know what you have". Next blood test confirmed ANCA positive.
Not happy to have it but better to know what was wrong and that i wasn't "making it up".
I was diagnosed 18 years ago, but I'd been ill - and misdiagnosed - for 3 years before then. Some forms of vasculitis can take years to diagnose, especially if they look like other things, and/or don't have clear bloods.
I was diagnosed in 1998. I have been on plaque nil plus supplemented with an aggressive pain management regimen. I have continued to work and do to this day. It's a real journey.
Diagnosed Feb 2013 immediate after all my organs shut down suddenly . However I had slowly deteriorated from 5 months prior with flu like symptoms and an initial diagnosis of tuberculosis n pneumonia.
Diagnosed with GPA in 2002 after about 6mths of flulike symptoms and excruciating joint pain. Admitted to rheumatology unit and diagnosed within 3days. Just as well, as my kidneys were close to falling.
Diagnosed 2004 with cerebral vasculiis very lucky due to the knowledge of my consultant I was diagnosed relatively quickly .
Diagnosed in January 2012 after several years of different symptoms, and about two and a half years of 'fibromyalgia'. Was told that there was no treatment for fibromyalgia and I just had to learn to live with it.
MPA with kidney involvement. I've hated this disease and its treatment for two years, as it so completely devastated my way of life.
Currently, I've achieved 'remission' but doubt I'll ever be the same or feel healthy again. It confounds me that the term remission is used in vasculitis. (Ironically, if I felt better I would be a better advocate for myself.)
Hi Michichigo,
I agree with you. I have always called it" pause mode", which for most people is exactly what it is.
best of luck
Tony
Dear Susan,
I have a confession to make......My postal poll form, the one that I filled in AGES ago wasn't posted. I found it, having slipped down the back of a unit, TODAY! I posted it immediately! Very, Very, VERY sorry.
Interesting results, to this poll, it seems that most people were either under ten years. Some of us were 'old hands' though. How long has John been diagnosed for, as a matter of interest, and NOT wishing to be nosey (Ok maybe a bit). Will you give him my 'best' please. Once again sorry!
AndrewT
Thanks Susan.
Diagnosed GPA in 1999 but only started proper medication other than steroids in 2009, touch wood now in remission but still on MF down to 1000mgs daily. Feeling good! xx
I was diagnosed with Wegeners GPA in June 2014 having had symptoms of swelling, rashes and joint pain for a number of years - in 2011 I was diagnosed with palindromic rheumatism. From June 2013 to June 2014 I suffered head and face pain, hearing loss and other symptoms which eventually led to diagnosis. It was a great relief to find out what was wrong and start treatment which has given me some quality of life back.
I had a small blood clot in an artery in my arm in March 2014. When they took it out, they did a biopsy of the artery and discovered that I had inflammation. I was diagnosed as having nonspecific Vasculitis as i had no symptoms except varying degrees of stenosis of various arteries. I am taking low dose steroids, methotrexate, and aspirin 81. Side effects from the drugs are giving me the most problems such as; blurry vision from rapidly growing cataracts caused by the steroids, endless infections caused by the methotrexate, tinnitus from the aspirin, neuropathy probably caused by Lipitor etc I hate having Vasculitis, but I hate taking the drugs used to treat it even more!!!
😡
I had Temporal Arteritis, diagnosed last April. I am a long course of steroids, but things seem to be ok at the moment. See my rheumatologist again next month.
Diagnosed about two months ago with HUVs, but have been sick for 6 yrs.
Had seronegative RA for 28 years, along with Sjogren's and a lung disease, Bronchiectasis. In 2012 I had cancer. Surgery and chemotherapy has hopefully given that the sulks. After treatment, my RA became seropositive and rheumy saw my bright red and itchy legs and declared Rheumatoid Vasculitis. Been on prednisolone for 13 months alongside MTX. Still not under control. Pred now reduced to 10mg daily and MTX reduced from 25ml to 20ml. It might have to be stopped because of my liver enzyme results being "erratic" for the last 8 months.
Diagnosed with MPA July 2012, kidney, lung and nerve involvement, now clinically in remission but still ANCA positive.
I have CSS and diagnosed eight years ago. I was lucky that I was diagnosed quickly. I started from on 70 mgs of prednisone and just recently weaned my self down to zero. However the steroid use caused a lot of damage, in the first years use I developed bilateral cataracts, then glaucoma, asthma and sinus problems as per CSS, diabetes vitamin B deficiency, chronic kidney disease stage 3 , obstructive sleep apnoea, Tracheobronchromalacia I think that's all the list is so long I'm inclined to forget one or two. I'm luckily my GP is very supportive but like my previous GP admits she knows nothing about CSS. I attend Addenbrooks for my CSS which I'm happy about and my local hospital Ipswich for the rest. I recently fell down three stairs and sustained a trimalleolar fracture right ankle now out of cast and walking with great care and two walking sticks.
GPA diagnosed in 2008 have had a couple of relapses since; the first one at the end of initial treatment on reduction of medication; the second one 18 months after two years of six monthly Rituximab. Affects ears, nose, throat, eyes and kidneys.
Hi, I was diagnosed with GCA in 2009. However my symptoms changed two years ago to autoimmune hearing loss, sinusitis, different awful headaches, dizziness, tinnitus and recently liver problems.
Where are you seen? maisie5 if you don't mind me asking.
Susan
Sorry, to add to the above. Now my records show GCA plus other various diagnosis plus a separate entry of Vasculitis.
23 years with WG/GPA currently stable managed with 12.5mg MTX weekly and 5mg prednisolone daily.
I had no idea I was ill,tests for my hb showed i had kidney failure and ANCA Vasulitis. MPA I was admitted to hospital straight away.
I had symptoms for about 9 months which I thought was just aches and pains. Arm weakness and vision changes prompted my GP visit. PMR and TA diagnosed but large vessel involvement of axillary and brachial vessels - pulselessness presentation took another 6 weeks
