CNS Symptoms and Advice

[Galaxy2]

I’d be so grateful if anyone with cns involvement can offer their experiences.

I haven’t got a neurologist to ask advice from at the moment, I’m really hoping to see one early next year , hopefully, but I haven’t got an appointment yet. I have a great Gp, but they can’t answer my questions.

I’ve really deteriorated in the last year after many years of better health which is frustrating as I just feel like I’m going backwards.

When I started rituximab 7 ish years ago I remember being disappointed as it took a good year or so for things to improve but then my main problem was peripheral nerve damage, with autonomic involvement . It was explained to me how long the process is for the nerves to start to rejuvenate so I understood it wasn’t going to be a quick improvement.

This time my symptoms are affecting my cns , I’ve had some small brain bleeds and a lumbar puncture earlier in the year showed inflammation in my cns. I had rituximab in September but I’ve had no improvement yet in symptoms. So my main question is should I be seeing an improvement by now, I’ve had cns involvement before but I was on mycophenolate then and that took a while to work. Does it also take a while for the inflammation in the cns and the symptoms to calm after rituximab?

I’m just interested if anyone can share their experiences, I’m struggling to keep working, as concentration triggers my symptoms. I’ve cut my hours right down and can’t afford to stay as I am.

If anyone can offer any insight I’d be really grateful .

[AmyS1]

You need to be viewed by a specialist Vasculitis team. Contact the Vasculitis telephone helpline urgently.

[Galaxy2 in reply to AmyS1]

Thank you for replying Amy, I have been under a vasculitis specialist in the past but since he retired I have been unable to find another specialist neurologist. I have been in contact previously with the helpline but there just isn’t anyone in my area. It’s just frustrating as I have questions that I can’t get answers to

[AmyS1 in reply to Galaxy2]

CNS vasculitis you may need to travel to Hammersmith Hospital London or somewhere similar it is very rare.

[Investigator1]

Hi Galaxy2. I have been on Rituximab for over 3 years, if I can offer some hope, I have got to a point where I don’t have any Vasculitis symptoms because it’s under control HOWEVER, I have been told (please hear me out because it’s a bit drawn out) by a professor who I saw instead of my consultant once this message “in the early days you won’t see much improvement until 16-20 weeks, it’ll stop any damage a lot earlier. When your GPA is under control it will be the opposite I.e you will start feeling a bit dodgy around the same timeframe because it’s doing its stuff. It sounds a bit odd but kind of makes sense when you think it is a slow burner. I can’t set my watch by it but generally I feel crap after a month then again 3-4 months then ok until my next dose. So my advice is hang in there it could be that improvement is round the corner. Take care and Merry Christmas. Nick.

[Galaxy2 in reply to Investigator1]

Thanks Nick, you're right, I think I need to be patient. Its tricky to predict as I do remember when I first had rituximab I was so disappointed as it didn't seem to have any effect for a long time but I did then start to see huge improvements. I've never been completely free of symptoms but at times almost was leading a normal life. Having gone backwards now with different symptoms I'm waiting to see a change and just keep hoping things will get better again.

Thanks for your support

[Investigator1 in reply to Galaxy2]

I’ll be very surprised if you don’t feel better soon, obviously if things get worse it’s time for another blood test but stick with it, I am feeling it with you. Take care. Nick.

[Suzi70 Administrator Vasculitis UK]

CNSV is extremely rare and difficult to manage and treat. For better outcomes, the evidence shows, patients should be seen by a vasculitis multidisciplinary centre. (All the specialists under one roof) Although one or two patients do seem to do well if they can find a consultant who has knowledge, understanding and experience of this type of vasculitis at other hospitals. Talking to others who have CNSV in the group may help you locate one??

Cyclophosphamide is the usual initial drug used to bring the CNSV under control followed by immune suppression drug or a combination of immune suppression drugs.

There are two types of CNSV , primary and secondary.

Primary angiitis of the CNS (PACNS) is vasculitis confined specifically to the brain and spinal cord, which make up the central nervous system.

Secondary CNS vasculitis usually occurs secondary to other autoimmune diseases

The recognised multidisciplinary centres in the U.K. for treating all types of vasculitis are Hammersmith London, Queen Elizabeth Birmingham, Kellgren Centre Manchester, Addenbrookes Cambridge and Aberdeen in Scotland.

Other patients diagnosed with CNSV I know, are also seen at the Nuffield Department at Oxford.

It’s good to hear you have a very supportive GP.

[Galaxy2 in reply to Suzi70]

Thanks Suzi, I used to be under the Royal Free ( and had tests arranged at Hammersmith from there), Guys and at one time Kings, I did have such a good group of specialists looking after me. My vasculitis is secondary to another auto immune disease and complex as I have other diagnoses related to it now aswell.

Its been frustrating as I haven't been able to find a doctor who can explain my neurological symptoms or advise me for a while. Hopefully I will get a new appointment soon.

Thanks so much for replying.