Vasculitis UK

elusive answers

Hi All

I wonder if I can post some of my details and then ask for advice.

I had a TIA back in April 2008 and was seeing a neurologist. I had a lot of tests and was told that I have SLE and referred to a Rheumatolgist who started treating me as such. I had a further TIA in Feb 2009 and over the next appointments it was inferred that I had vasculitis. Whenever I asked if I could have both I was always told that they can run together and it is difficult to give a 100% diagnosis. I was treated for both, I have had Cyclo in Oct/Nov 2009 and then rituixmab in Jan 2010, following on from some blood tests that were taken before the Rituixmab I was told that I have anti-phospholipid and need blood thinners. I started on injections of tinzaparin and then went on to warfarin. I had another round of Rituimab in September 2010 and am having another lot now.

I know some of my tests results but appreicate that these can change, they are:-

Anti nuclear ANA postivie

Homogenous pattern and also speckled pattern (not sure if this was the same test or two different ones.

IGBAB = 26 range should be (0-10)

IGMAB = 14 range should be (0-10)

my C3 are normal but C4 is always low think I have only had one in normal range in the last 4 years.

I have had normal MRI but two abnormal spect scans, the first one in May 2009 which had lots of abnormaliites and then another one in May 2010 which showed improvement.

The rheumy's opinion of this is that there are treating me correctly and seeing results but they recently referred me to a neurologist as my day to day headaches have not seen any improvement.

The neurologist said that I hadn't had TIA's and that I don;t have vascuclitis I have vasculopathy.

I recently suffered some problems with my vision in my left eye and my optician sent me to hospital. They ran a number of tests and said eveything was fine but given my medical problems they thought it was optic neuritis and would refer me to someone else. I saw them recently and they said that there was no evidence of vasculitis in the eye but that I had had a haemoraghe and it was clearly visible. Quite concerning as I saw three Drs before they referred me and they said there was nothing wrong. I recently saw a rheumy and told him about my eye and he asked me to ask the eye Dr if it was caused by vasculitis. I told him that he had already told me there was no evidence of vasculitis but the Rheumy said "well there won;t be now but that doesn't mean that it wasn;t caused by that", the eye problem started in May and I only got an answer in Sept.

Sorry for harping on here but what I wanted to try and find out is what people who are suffering with this condition think about my results, the treatment, the difference of opinions between the two specialists. I just end up confused as I either don;t get a straight answer or I do but then another Dr disagrees.

Thank you in advance for your time and sorry it's a long post.


3 Replies

Daily headaches sounds worrying. How bad are they? With cerebral vasculitis they tend to be off the scale, and don't respond to pain killers very well. Such headaches are often the main symptom. Though sometimes people don't have them. I fell ill in 1994, and developed a wide range of neurological problems over the following years (masses and masses of problems). But I didn't get the "typical" cerebral vasculitis headaches until about 2005.

And TIAs are a typical symptom of cerebral vasculitis.

You seem to be getting bounced around from specialist to specialist, all disagreeing. Would it be at all feasible for you to go to see a vasculitis specialist like Dr Jayne in Cambridge if I remember his location correctly?

1 like

Hi Louise, i have CNSV my sight loss in my left eye in Oct 2005 was the first sign something was seriously wrong but A & E just told me i should expect some deterioration in sight i was nearly 40 (middle aged they said) no further tests were done and i was sent home. My sight gradually returned over the next 6 weeks but a VER (Visual Evoked Responses) test some 9 months later picked up a time delay on that side. Over a year later on diagnosis of CNSV i was told the incident was most probably Optic Neuritis coupled with unbearable pain in my head was one of the first symptoms of CNSV i am told if more investigations had been done at the time i would not have nearly lost my life when i had 3 strokes in quick succession attributed to the CNSV. Re the headaches ... weak term 'headache' for so many excrutiating ways your brain can hurt and be unresponsive to meds. I suffer horrendous pain and this times flare up meant even on morphine fron June- end of August unceasing continual pain. Thankfully most of the time now i can reduce the pain to doo- able with different cocktails of pain relief and 40mg Prednisolone. However there are still occasions that it is unresponsive for many hours and i worry it will not subside it also affects the top of my spine feeling like someone has inserted two iron rods either sideof my spine now i know why it is CNS rather than just cerebral . In the past i have suffered stiffness down my spine but not pain like this flare up.

Dr Jayne is at Addenbrookes Research Hospital Cambridge. He is the leading UK Vasculitis Specialist. Cambridge is also one of the research centres for vasculitis. For any one reading this i would liike to say that for 4 years prior to this flare on low maintenance meds i managed a pretty successful remission. So i'm hoping to become invincible again. Whenever you can try to stay fit walking swimming etc. Eat healthy take adequate rest and most important listen to your own body. If that means upsetting medics from time to time by being insistent so be it..... ITS YOUR BODY and YOU have to live in it.

Good luck!



many thanks for your replies. I am going to see my GP and ask for a referral to Dr Jayne.

Thanks again and best wishes to you.



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