My mum has just been told she has vasculitis and it's definitely affected her brain! She also has temple arthritis and has been on steroids

For over a year and eAch time they try to reduce it the inflammation gets worse in her head? She is now having more tests done and is on another medication along side the steriods, has been told to higher the does of new tablets to 2 a day but bloods have shown inflammation has still risen? She also got told she has a high level of white matters in her brain? Does anyone else know y it's more tests and is anyone em else suffering in the same way? What is the white matters all about also?

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  • Kelly sorry to hear about your mum but it seems to be the norm. My husband is going through the same kind of hell and I have fought and fought to get answers to no avail, Bryan also has more white matter in his brain than he should have not even referred him! he also has severe paranasal inflammatory disease done nothing? just diagnoses him with type 2 respiratory failure ,chronic obstructive pulmonary disease and said its because he is a ex smoker. My heart goes out to u and your mum I do not know where to turn next watching someone's health fail in a serious way and they stand back and just give drug after drug without do the right tests or getting u to the right doctors.Bryn is now on 20 different med a day for he has other probs as well no one links anything together or communicates. Sorry for my moan and your plight hope someone gives u some suggestions. jill

  • Thank you for the reply, my mum was diagnosed with just temple arthritis last year and gave her predislone to control it but they failed! After being told to up steroids to 15 a day she became more and more in pain? Scans etc done just before Christmas showed vasculitis ! They keep telling us that they want to do more test after starting her on a new drug which had to be raised to two a day? Begins with an A? Not sure of how to spell it! All we get told is there not giving up on her yet? But we don't get much info from the consultant at our hospital? My mum also got told 3 years ago she also has c.o.p.d

  • Small white lesions become more common as we age and are often seen in higher concentrations in people with dementia and other conditions unrelated to vasculitis. I'm 56 with WG/GWP (in remission) and have at least one small white lesion which may or may not be a as result of the disease. Numerous MRI scans haven't shown any change in the lesion over almost 7 years and I've been told not to worry.

    However, clearly there's something amiss in your Mum's case and it sounds as if the vasculitis may not yet be under control. Is she being treated at a hospital with the appropriate expertise? If not then it's vital you get in touch with somewhere like Addenbrookes to take control and help.

    With hopeful and healthy wishes.

  • Thank you for the reply, my mum was diagnosed with just temple arthritis last year and gave her predislone to control it but they failed! After being told to up steroids to 15 a day she became more and more in pain? Scans etc done just before Christmas showed vasculitis ! They keep telling us that they want to do more test after starting her on a new drug which had to be raised to two a day? Begins with an A? Not sure of how to spell it! All we get told is there not giving up on her yet? But we don't get much info from the consultant at our hospital?

  • I suspect your Mum has been given Azathioprine and whilst that and a combination of steroids is one way the disease can be brought under control, there's a need for constant monitoring by a consultant who knows what she/he is doing. Vasculitis can be very enigmatic and what works for one doesn't necessarily work for another.

    Without wishing to alarm you, the disease can do unnecessary damage and be life-threatening if not treated by an inexperienced clinician. Clearly someone with knowledge of vasculitis has been able to make a diagnosis (temporal arteritis?) and if you haven't already done so already, you can read more about it on the V-UK website at vasculitis.org.uk/about-vas...

    It's vital you get the answers you need from your Mum's consultant and don't assume that 'doctor knows best', as that's not always the case.

    Have you made contact with the support representative for V-UK in your area? There are links on the website or post your location and hospital and I'll help you with more information.

  • Thank you for all your advice, those are the tablets being used and I totally understand what your saying! I will check this website out ASAP ! Again thank you x

  • If she has inflammation of her temple artery, she needs more than 15mg of prednisolone a day!

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