Vasculitis

[Creamtea]

I was diagnosed with Vasculitis last year.

I’ve had another pet scan recently which shows that it has got worse and it involves several vessels. I have been suffering with poor balance and fuzzy head for a while now and seen a neurologist today and he says that the Vasculitis could have spread to my brain and has booked an mri. How serious is this and should I have increased steroids or be on some other medication.

I have recently had cataract surgery to both eyes which may be the cause of fuzzy head.

[PMRpro Ambassador]

What medication are you on? You are surely on something? Are you on steroids? You should have been if you were diagnosed by a previous PET scan - and if the large vessel vasculitis is worsening, the steroid dose you are on is not enough.

It sounds as if you have what is called large vessel vasculitis (LVV) - and it can be accompanied by GCA (giant cell arteritis). It is normally managed with higher dosed corticosteroids initially and then the dose is reduced to find the lowest dose that manages the symptoms. Both are normally put under the care of rheumatologists, not neurologists.

This

academic.oup.com/rheumatolo...

may be a bit complicated for you - but Figure 1 shows how they are related.

Just looked at your Profile - you've been diagnosed with LVV/GCA for a year - you haven't been managed well at all. The lefunomide isn't proven to do anything in GCA - and it really sounds as if your doctor has been a bit gung-ho about reducing the pred dose. In the UK I think you will qualify for tocilizumab for recurrent GCA. You need a good rheumy who is confident using it.

[Creamtea in reply to PMRpro]

Sorry didn’t give all the information I know it seems so complicated. I had pmr 5 years ago then gca 2 years after that then Vasculitis last year.

I am on prednisolone. I was diwn to 4.5 but then increased it to 6 due to increased fuzzy head.

Unfortunately my rheumatologist has retired so am now seeing a different doctor. When I saw him last week he suggested I increased the steroid to 15 mg for 2 weeks then 12.5 for 2 weeks then 10 for a month. I wasn’t actually sure whether this was for the fuzzy head or the result of the pet scan. I know I should have asked but it’s not till you get home that you think of more questions. At present I can’t get hold of anyone at the hospital to clarify. So havnt gone back to large dose as was anxious to get off the steroids and previous doctor wasn’t keen on increasing steroids.

I was referred to neurologust due to my imbalance problem.

[PMRpro Ambassador in reply to Creamtea]

15mg isn't a large dose - a large dose for LVV would be 30 or 40mg. If the LVV is getting worse then you need more pred. No two ways about that. They aren't 3 separate things - they are all at different points on a spectrum, all vasculitis, all causing inflammation and all needing to be treated.

[Creamtea in reply to PMRpro]

Thank you for advice. I have left a message with rheumatologist secretary to get some answers. So hopefully I’ll get a reply soon.

[DorsetLady PMRGCAuk volunteer in reply to Creamtea]

I hope so too, as PMRpro has said needs to be treated correctly….and in a timely manner.

Please keep us informed.

[Grammy80]

So glad you posted....you've gotten great advice. Sounds like more steroids are in order. I have GCA..Vasculitis....you want to be headed in the other direction!💕