Cerebral vasculitus

[Joan78]

I am looking for any help or advice thst my life will not be like this for ever. I am bed bound at 40 my left foot is paralysed and i am having fits every day. I was diagnosed in may and have been kn icu 4 times on life support since then. I am on 40mg of steroids and finish cyclophoshomide snd just started azythoprine. I know i should be thankful i am alive but i am so miserable with how its affecting me.

[roobub]

hi Joan78

obviously this reply can't be too specific because everyone is affected differently but i do know many people that are diagnosed with vasculitis take some time to get the illness under control and then start to see some improvement.

You will probably have seen how important it is to be treated by someone very experienced in vasculitis and i'm sure someone from vasculitis uk will point you in the right direction if that is not the case already.

i can only say i hope you are feeling much better soon

regards

roobub

[Canygirl61]

Hi Joan78,

I'm sorry to hear that you're so ill with cerebral vasculitis. I'm curious as to why you haven't been treated with Rituxan. As I understand it, it is the recommended protocol— though, I don't know your history or whether Rituxan is appropriate. Just wondering. Hope you start to get answers and turn things around.

[Joan78 in reply to Canygirl61]

I have never been offered rituxan. I have asked to be referred to a specialist in liverpool i think its called the walton centre. What is the difference between them. I just feel completely overwhelmed by it all. I went in hospitalfor pain management on april 9th and thats the last i remeber for a good few weeks. I have been on life support 4 times over the last few months. One step forward 2 back.

[vivdunstan Volunteer in reply to Canygirl61]

Cerebral vasculitis isn't ANCA associated so has different treatments than for GPA and others. Rituximab also has less proven efficacy in cerebral vasculitis, though it is sometimes used, especially for younger women for whom fertility is a concern. Cyclophosphamide is the classic treatment though, and works more quickly than Rituximab. So Joan has has a good treatment.

[Joan78 in reply to vivdunstan]

What is anca associated mean xx sorry to keep asking questions but i am so scared what the outcome is going to be.

[vivdunstan Volunteer in reply to Joan78]

Sorry. Vasculitis takes various forms, and some of the more common are ANCA associated ones. These tend to be better researched, and get more new treatments approved,

Cerebral vasculitis is different, so the treatments that are approved for these other diseases are not automatically used for it.

Please be assured that you have been getting the right standard treatment, in the UK certainly. And it is the best treatment to help you recover.

To read more about ANCA forms of vasculitis see

vasculitis.org.uk/about-vas...

But again cerebral vasculitis isn't of that kind. And you are getting the right treatment.

[vivdunstan Volunteer]

I've been ill with cerebral vasculitis since 1994 when I was just 22. I had a 3 year delay in diagnosis and then a 15 year delay in proper chemo Cyclophosphamide treatment due to fertility concerns (not mine!), which didn't help me have the best outcome. But you have had the best treatment promptly, and have the best prospects of a good outcome.

However you're still early on in the process. Cyclophosphamide generally works well for cerebral vasculitis - and be assured it is the standard treatment - but it can take some time before you see all its benefits. It can be months or even years for all improvement to occur. When I finally had proper Cyclophosphamide treatment in 2012 I reacted badly to it, but over the next year I started to improve more and more. So it takes time.

I was on Azathioprine from 1998 to about 2016. It is another standard treatment for cerebral vasculitis, especially after Cyclophosphamide, but beware it can take up to 3 months after you start before it is fully effective. As it kicks in the medics will gradually lower your steroids, all the time keeping an eye to make sure your disease is under control.

So yes, you're still early on in the process, but hopefully things will improve significantly with more time. Meanwhile your medics need to make sure that symptoms like fits etc are as controlled as possible, so may use other drugs to help with that. But fingers crossed over time you will see more and more benefits from the chemo and immunosuppressive treatments that directly target your cerebral vasculitis. Good luck!

[Joan78 in reply to vivdunstan]

Thankyou so much for explaining. Its so hard to be struck down by something so rare. Are fits associated with cerebral vasculitus becausei have been having up to 8 a day. One lasted 7 hours that ended woth me being ventilated for the fourth time. My neuro doctor is blaming the fits on stress but i am adament they must be associated with the vasculitus as i havenever suffered with them before.

[vivdunstan Volunteer in reply to Joan78]

I've heard of people with cerebral vasculitis having fits before because of the the way the brain is affected, especially early on in the treatment process. I wonder if it might be worth you contacting the Vasculitis UK helpline to ask for advice about good doctors and specialists. Because cerebral vasculitis is a very rare disease - just 1 or 2 cases per million people. So even specialists don't usually see it, and aren't always as knowledgeable about it as we would like.

You can phone or email the charity. Here are the contact details:

vasculitis.org.uk/helpline

[Hidden]

Are you on facebook? There is a page with more than a few members who were once in the same boat as you. Jim Bornac is the creator. Best wishes!

[beeryone]

Hello Joan.join the fasculitis support uk.there will help you.john mills and sedan mills..Great family. Keep strong

[beeryone]

Sasan