Can anyone help with cerebral vasculitis?

My husband who is a very active hardworking 51 year old was diagnosed with cerebral vasculitis 4 months ago. Was in an induced coma for 3 1/2 weeks, has had 6 doses of cyclophosphomide and is on prednisolon. He has finished chemo and has been put on Azathioprine, daily . He also had a DVT whilst in hospital, so is also taking Warfarin and having weekly blood tests. He also has hypertension and is now on medication for blood pressure. He is on a cocktail of drugs daily. The 2 strokes in the brain are cognitive and optical areas. He has made an amazing recovery and it would appear that at the moment it has left with some short term memory loss and lack of concentration, we are waiting to see the ophthalmologist as the optician picked up some things behind the eye. We are still unsure if he will be able to return to work as he is a Managing Director of a TV broadcasting company, which is demanding and I feel at the moment he would not be able to cope. I know its only 4 months, but when I read some of the stories my fear is that things could get worse. At this moment in time he is too frightened to look at Healthunlocked, but hopefully in time he will. So my question to anyone out there is has anyone been through a similar thing and if so how are you doing and is there anything I should be concerned about. I had not even heard of this until it happened to us.

23 Replies

  • Hi

    I am not sure if I can help? I have P-ANCA Vasculitis and am at the moment under Query Cerebral Vasculitis? as I have regular (monthly) Mini Stokes which last about12-36 hours. A&E became more a waste of time; to themselves and to me, as all they where interested in are blood clots, which I do not have and believe it is due to inflammation at the stem of the brain cutting off oxygen supply.

    My first stroke affected me the worst by affecting, speech, word finding, speaking, memory and most of all confidence! I was sent to Speech and Language Therapy who saved me and help enormously. Due to the sudden loss of these things you realise you have become disabilitated and it is a shock to the system, as you are no longer "normal" This is depressive, unbelievable, frustrated,confusing and with all these things going on you loose your confidence!! but by having a third party (Speech & Language) who listen and deal with people worse than you - I was able to express my issues. They worked hard with me and after two years have got a great deal of confidence back again. Memory still a problem and tiredness, speech much better and have started talking to strangers and other people. I find in shops or places with a great deal of electricity throws me out (i.E Apple shop).

    So the tools I used where: Speech and Language Therapy for speech. I bought myself a mini iPad which I write down all the notes when going to a Doctors appointment or any appointment to help with memory and still use it. I also use it to play silly simple mind games which keep the brain ticking. I used email for all my correspondence as it was easier than trying to talk on a phone. You need to tell people you have had a stroke and please give you time( and every one I generally felt, once they knew this they listened) I needed time to form sentences, find basic words. Speech and Language Therapy teach you this and go back to basics and short sentences and from there build onto them, as things improve.

    I am much better with my confidence but the brain still sometimes gets muddled and when this happens you may get worse, as you lose track where you where and what you where talking about? Forgetting what you are talking about, is and was common to me. You will also note in this email I word and put things in a slightly jumbled way, but the main thing is I am still able to communicate.

    You and your family should find support/guidance in learning how to live with someone who has had a stroke and you may find this on the Stroke website. I found the main thing was to be given the chance to speak! and when speaking, you as one of the family, 'listen carefully', incase they forget what they are talking about and then you can just join in and pick up their conversation until they are happy to continue what they where saying. If they are going shopping give them a list, as you will notice when they do not have one the main thing they went shopping for they will leave/forget to buy! I found my answers YES and NO got confused and would say YES to something which I should have said NO to and then the person thinks it is YES but after a while finds out it was NO! (sorry a bit confusing this is).

    I am not sure if this is of any help but this is what affected me, You must get support yourself which I think is important and if you want to contact me personally my email is as I probably have a lot more to say but your husband stroke could affect him differently to me? so will end off here BUT YES I think a bit of work Speech and Language Therapy will help enormously. Ant

  • Thank you so much for your response, there are some similarities to you and Richard my husband but fortunately his speech has not been affected. I have made a not of your details and I will pass this on to Richard and maybe at some point when he feels able to he can call you.

    Huge thank you for your support and good luck with everything


  • Hi... I am sorry to hear your husband has been diagnosed with Cerebral Vasculitis. Clearly he has been through a rough period. I too have Cerebral Vasculitis and was diagnosed in 2006. Before my diagnosis amongst many strange and scary other related health issues i had four strokes which at that time left me with damage to several areas in the brain. One my hippocampus affecting memory and another main area was in my pre-frontal cortex affecting executive functioning. This part of the brain deals with decision making, prioritizing and organisational skills. Like your husband i was very fit, and had a physically demanding profession in sports coaching i also was very involved in the running of sports bodies and the development of sport.

    I am /was a very organised person and having those skills set the foundation for a new way of tackling everyday tasks. Like the previous message i realised emails much more practical than telephone conversations as you have the option to keep and re read . I suffered anterograde amnesia meaning my long term memory prior to 2006 was untouched thankfully but everything after that could only be retained for 10 mins max. I likened it to keeping the last ten minutes memory on an etcha-sketch and as ten mins after an event loomed the memory was already fading off the screen.

    It would be helpful to ask for a referral to a clinical / neuro-psychologist sooner rather than later for them to assess which parts of the cognitive functioning have been affected. They will carry out several memory tests, the Wechsler and Rivermead. These will have two benefits one to assess how much of the working memory has been affected and by taking part in the tests will help show you and your husband whether he is able to concentrate on tasks like this or whether it is too mentally demanding fatigue wise at this stage. This will act as a benchmark for how he would cope with mental tasks at work.

    With help from HR and a priceless welfare officer who gave me space to talk in private and air my fears and concerns to someone impartial. This really helped as in the early stages i was very frightened but being the person who the family relied on usually for support and income . i did not feel happy to worry my family further by letting them know how scared i was and frightened that the life i had took for granted was stood on its head with no prospect, i thought ,at the time of improving.

    Being stubborn i did return to work but sadly had to step down from some of my more mentally demanding posts , i also had to factor into my day, sleep periods. As Cerebral Vasculitis affects the brain it was not sufficient for me just to sit down for a spell my brain needed to totally switch off and that meant sleep. By doing this i could have some normality and not risk getting very confused which was guaranteed if i became over tired.

    With lots of coping strategies , rest, maintenance drugs and the right medical back up i had four very productive years back in work.

    Unfortunately 5 years after my first incidence of CV i suddenly became very ill very quickly and spent 6 weeks in hospital. That was in the summer of 2011, although i am now relatively stable and over the last six months i have been gradually increasing my fitness again with the consultants backing i have only and finally this month been able to return to a maintenance regime of drugs.

    Sadly during that time i needed to retire on health grounds on a tier 1 ( no realistic chance of carrying out any kind of work in the future) . That was the hardest decision i have had made for me.

    However i feel very lucky to be able to enjoy life again even if there are some limitations i also feel now that it was the best decision as the best parts of my day can be time spent with my family rather than strangers at work who could not possibly appreciate how much effort was being put in just to perform everyday tasks . Cerebral vasculitis is a hidden condition which means people are not constantly reminding you that you are ill, but on the down side they do not see your pain or the all consuming fatigue and can be very unsympathetic at times and lack patience.

    I guess what i am trying to say is the rare and potentially life threatening condition affects each person differently . And each sufferer will have different ways of getting strong physically and mentally. If returning to work with the right back up is what makes your husband tick then give it a try but make sure foundation stones are in place first. But bear in mind stressful situations and tiredness can exacerbate the condition (a medical fact). Try and stay strong for your husband you are doing a sound job even now arming yourself with more information whilst he feels at this stage unable to.

    Make sure you take one step at a time because whether you are ready to accept it your lives have changed but that does not necessarily mean that's bad.

    Most important take your lead from how your husband feels day to day provided he is honest with himself.

    Hope this helps , best of luck


  • I cannot thank you enough for your email, it has given me a great deal of knowledge and understanding than I felt I had before. Your work sounds very similar to that of my husband as he is in sport broadcasting, and it has worried me about his return to work. I feel due to similar issues you had that this may not be possible, but there might be something less demanding that he will be able to do. I could go on and on regarding our situation, but would like to stay in touch and maybe we could talk at some stage.

    many thanks and best wishes,


  • Hi Sharon, i am pleased i can help in some way at this difficult time, it is not a problem really. I am happy for you to keep in touch. I have just realised looking at past posts that you also enquired about holiday insurance. I used Insure and Go in the Autumn to fly to Italy for a break. They specialize in health issue cover.They specified my condition on the policy after asking some basic health questions but made no issues of it and were very helpful... You can contact them on 0844 888 1587 . Cost circa £50 ( myself and partner) plus £2.00 for an additional card so we each carried a card . I appreciate this info might be too late now if you're already sorted out. But keep the info for another time

    Again happy to help


  • Thank you for the insurance info, I hadn't got round to sorting it so will call these in the morning. Yes lets stay in touch, thank you.

  • My wife (32) was diagnosed with CNS vasculitis in November of 2012.

    After having weeks of problems and hospital visits she had at least two stokes but we had just been sent away, with them saying it was just a kidney infection. Two days after coming out of hospital she could not tell her way around our home or how old our kids where. The hospital had told me to take her to our GP should she seem ill again so i did.

    After seeing a locum doctor i was told she had a mental brake down and i would have to section her under the mental health act. I was told i could go to our local infirmary to get a second opinion if i wanted which i did. With in hours of being there they had done an MRI and it was even clear to me that her brain was in serious trouble. We had a specialist come over from salford royal hospital who took her under his care and started a massive dose of steroids.

    The next day you could hold a conversation with her but her short term memory was only about 1 minute, if we left the room she would forget we were ever there. She was in hospital for 6 weeks and they let come home a few days after her first dose of cyclophosphomide. When i first got her home i had to have the kids stay with my mother as it was just to much for me to cope with looking after her and them at the same time.

    After 6 months of the cyclophosphomide they gave her another MRI and found that there were some new lesions (she has 9+ now) in her brain stem so she had to continue with the treatment for another 3 months. She has been on Azathioprine daily since. We will be going for another MRI in the next few weeks to see if there has been any change.

    Her memory is far better now then what it was at the start of last year but she still finds it hard to keep some things locked in. Some times she has a kind of false memory where she will be certain that things have happened that are just off shoots of things she has been thinking about(hope that makes sense).

    As she gets tired she can get very confused and its hard to focus if there is a lot of noise (some thing the kids don't help with). She will often get lost when we are watching tv and i will need to keep stopping to help her understand what is happening. She also falls now with little or no warning which can be hard when we try to get out of the house.

    She gets very anxious in social situations because she is terrified that she will start repeating her self. If there is a crowed of people she finds it very hard to pick out faces and locations. Going to a place like Manchester city center would be way to much for her, she could easily get lost if left on her own.

    Simple jobs around the house can become very hard for her to do she will often walk away from some thing she is doing and totally for get about it. I have even seen her forget what she is doing as she is doing it. Following instructions can be hard and frustrating for her as well, when she knows that she used to be able to do thing like that without even thinking.

    As it stands right now i could not see her going back to work or even my self for that matter. We have been told that things should get better but there seems to be little or no change in the last 6 months. There are some good days and some bad, but things are getting better even if its only me coping with them. Last year was by far the hardest in both our lives

    sorry if my spelling or grammar is poor i have dyslexia

  • I am so sorry to hear of what has happened. I feel the difference here is catching Richard early. The day it happened he became confused and the ambulance was called immediately. I was fortunate to have a good friend in Neurology at the JR in Oxford and pulled all the strings to get Richard off the Isle of Wight where he became ill and transferred to Oxford although via Southampton. When we were in Southampton albeit for one night, they told me that Richard had Vasculitis but is was caused by malignant melanoma and he had 3 months to live. At that point I demanded that he be transferred immediately to Oxford which they did, as that is where our home and children are. Once in the JR they immediately scanned him and confirmed vasculitis as he had two simultaneous bleeds. They immediately put him on Steroids. This was all in a 4 day period. So I think Richard is one of the lucky ones. He has some of the symptoms you have described, and I feel lately his symptoms are slightly worse, but at the moment, he has been extremely lucky and resumes nearly a normal life but without working or doing very much compared to his previous life. Yes he gets confused, lacks confidence which is a shame as he used to do lots of public speaking, feels he cannot contribute to a conversation, had become extremely tired during the day, he too think he has been somewhere or something has happened that he may have read or seen on TV, so totally understand what you mean by this. Short term memory a bit of a problem, but we get by. I feel for you have small children, mine are teenagers so its a bit easier to cope with, although they do find it hard to understand whats happening some of the time. As for the long term I try not to discuss any of this with them.

    Any change or improvement that is happening with Richard now I feel is extremely slow as its hardly noticeable. I suppose should there be any further strokes or it raising its head it should be picked up when the bloods are taken which is weekly. We are seeing his Professor in March so I will be making notes in between and will go through them with him. Again will mention possibility of another MRI especially after hearing from all of you.

    As for the work, I can't see it happening but its a waiting game and thats what we have to do wait and see, we have been advised that he must not rush it.

    Please stay in touch its good to talk which is why I decided to register as its good to talk to people in the same situation, as this is a rare condition there are not many out there and its hard to talk to people who have no idea what we are going through, so thank you, and I wish your wife well.


  • Thanks Sharon i have only just joined the community here but it all ready feels good to get things off my chest. I can at times feel very isolated as there is just so little information about the condition. I have signed up with the vasculitis foundation in the US and they have sent us out information packs and there news letter. They are also having some webinars that start next week. you can sign up to it on there website.

    we are also in contact with the lauren currie twilight foundation who have a facebook group as well as other support. thelaurencurrietwilightfoun...

    Its good that they picked it up so soon for your husband, i had been taking my wife to the GP every week with thunderclap headaches for about 3 months before she started to have strokes. When she first became confused i had called an ambulance and she spent 3 days in hospital. She was on a ward with lots of elderly lady's with dementia, and i remember her saying how sad she was for them and how she would hate to be like that. I would never have imagined that with in a week she would be just like them. The doctors told me on the Friday they would give her and MRI on Saturday but instead they sent her home. I cant help but wonder how she would be now if they had just done it when they said they would.

  • Thank you Steve for those website I will look into them. We can't look back only forward, and yes we need all the support we can get. Speak soon,


  • Sorry for my delay in replying. Been very knocked out at moment.

    I have cerebral vasculitis. It was diagnosed in 1997, but I've been ill since 1994, so nearly 20 years now. My case is very similar to multiple sclerosis, and isn't a great positive example, because it's been quite progressive, and very difficult to treat since a relapse in 2004. But, miracle upon miracles, I may now have gone into remission, after years of fighting. Or if not I can manage on a slightly lower cocktail.

    As someone else here said every case is different. I've known other people with cerebral vasculitis to go into full remission. Life is never quite the same again with this disease, but generally it's manageable, and there can be a positive future.

    I wrote up my experiences with the disease. They're online at

    But they are a bit out of date now. Things are looking more positive for me at the moment :)

    Acceptance is a very important stage though. Your husband will have to go through that. At the moment he is understandably scared. But only once he accepts things can he then work out how best to keep going, and how to be as productive as possible. Despite my case being really bad - and there's no reason why mine should be how your husband's go - I managed to complete a part-time history PhD. So positive things can be achieved.

    The key thing is to hit the vasculitis with lots of treatment to put it into a quiet state, and not so life threatening. And then the immunosuppressive maintenance cocktail can keep things stable long-term.

    Good luck!

  • Hi, I hardly dare add anything to what Viv & Jo (Boo Boo) have said. They are both extremely well-informed about their illness and I often ask their advice. As Viv said, your husband is probably still in the "denial" stage that is so familiar to many of us. Oxford & the JR is a good place to be. Who does he see? CNS vasculitis is very rare and not well researched. Neil Scolding at Bristol is the acknowledged UK expert. As Viv said, the most important thing is to knock the disease hard initially to get it under control then keep it under with a well monitored maintenance regime.

    There is a meeting of the Oxford vasculitis suppport group on 23rd March. It can be very cathartic to meet others who have the same or similar illness. Even if your husband is not ready, you might find it helpful. If you email me your postal address to I can send you some info.

    But if you can persuade him just to look at whats on Vasculitis UK HU or Facebook - just as a spectator, it might help him. It's not easy for him, for you and for all your family. But a rare disease is not rare to those who suffer from it!

    Very best wishes - John

  • This is the link to the Vasculitis UK fb group, should you want to have a look. Also there is a fb group for CNSV which is quite active with members from Canada, the US and the UK.


  • Sorry for the delay in responding. Thank you for this, it appears from what i have received so far that most people appear to have a relapse after about 7 years! As you say some don't and it would be good to hear from anyone that went into remission and has been for a long time, maybe its those we won't hear from as there is no need!

    I am pleased for you that things have got better, maybe now the medication has changed and things have progressed lets hope so.

  • Hello there. I was diagnosed with Cerebral & CNS Vasculitis in July 2011 after spending 5 weeks at the John Radcliffe hospital in Oxford, and have just signed up to HealthUnlocked on the recommendation of the local vasculitis support group. Your husband's age and condition are similar to mine, and I would like to offer any advice on the illness and treatment, if you wish. I am 49 years old, married, and have a 15 year old son and an 18 year old daughter who is in her first year at university. I am taking Methotrexate and Prednisolone on the advice of Professor Luqmani at NOC, but have taken lots of other medication on the journey to recovery. As a professional engineer, I was never really scared about vasculitis, but worked very closely with some really excellent health professionals in order to minimise the issues. Life certainly changed after the diagnosis, but in some ways it is easier to focus on the important things in life such as having a great family. I am planning to attend the seminar in Abingdon on 23rd March with my wife, and look forward to hearing the discussions. Best wishes for the future recovery.

  • Hi, thank you for responding. It sounds very similar situation with us re family etc., but I am being ignorant here what is CNS. I am not sure if you are the person we were given details to call you. Are you in Bloxham?

  • Hello. Nice to hear from you. CNS is Central Nervous System and the MRI scans will normally show cloudy areas that are affected in the head and spine. We live in Middleton Cheney which is just north of Banbury, and I spoke to Sue who lives in Kings Sutton saying that it would be fine to be contacted by anyone with Vasculitis, and especially yourselves since I think you live in the Oxford area. You are probably bewildered by this health condition since it is so rare, but I have done lots of research and feel like an expert now. There are some key people to know in this field, in Oxford and Stoke Mandeville, and I am more than happy to share all this with you. My wife and I both agree that one of the important aspects is to accept the illness, and then deal with it. I am now back at work at Aston Martin and are moving forward with physio and medication. Feel free to phone us at the weekend but avoid Friday evening since I am taking our daughter back to Brighton University. Look forward to speaking with you. Stephen (and Sarah)

  • Hi thanks for responding. CNS has never been put on any of Richards notes so was a little confused. Yes we live in Stonesfield not far from Woodstock/Charlbury. I am pleased to hear that your back at work. How long ago was your condition diagnosed? Richard isn't ready yet and I don't think would be able to resume his previous work, the lifestyle was too hectic and stressful, so not sure what he will do long term. Would be good to speak on the phone is there any chance you could email me your phone no. on as I'm not sure what Richard did with the no when Sue gave it to him.

    thank Sharon

  • Hello Sharon, I was diagnosed in Summer 2011 and was off work for a couple of years, but went back in a different role which is mainly office based. I will email the contact details to you shortly. Best Regards. Steve

  • Sorry about delay in responding. I too have CNS vasculitis, diagnosed in 2005. I have 26 lesions in the brain (it took over 8 years to diagnose it!!!) but I manage to cope quite well. Information is key to understanding and coping with this condition. Unfortunately it is rare, hence little is written in the Vasculitis Routemap. I found the information on the Mayo Clinic website and on the John Hopkins website in the US really useful, both top research facilities.

    I can only reiterate what others have written, each of us is different and the problems we encounter depend on which areas of the brain have been affected. The fact that your husband has been diagnosed so early is a positive thing. Being based in Oxford under Prof Luqmani's care is also to your advantage. I live in the Thames Valley but do not come under the same health trust. I wish you well as you travel this journey and will be happy to support you both as you learn more about this rare condition.

  • Thank you so much for your reply. Yes I feel we have had possibly the best care we could have asked for as the knowledge is so little still about this rare illness. I will look up the research you are referring to. I am finding 4 months on Richard is beginning to get more fatigued, but i'm sure this is part of the journey. Thank you for your advice and I wish you well.

  • I was diagnosed with cerebral vasculitis in 1997 and had to give up work due to this. It started in my toes at first and was told it was tight fitting shoes! I was given infusions of illaprost . The following year I became ill again but the symptoms were much worse. I was having mini strokes and terrible headaches and lost some use in my left arm.

    I was referred again to the same Specialist. I had a brain scan and lesions were discovered inside my brain. I then had a lumbar puncture which confirmed the diagnosis of cerebral vasculitis. I had 12 infusions of cyclophosphomide

    one each month for a year. I had sort term memory loss after the treatment which has got worse with age. I get tired

    easily and I have to pace myself and not overdo things. I had to give up work all together as I was unable to concentrate on anything for any length of time. I had very high blood pressure and now take 6 tablets a day for this.

    I had never heard of this condition either. I also had to take azathrioprine for a long time after I had finished the

    chemotherapy treatment. I always tried to keep positive about the outcome of this illness,but it is not easy.

    I send my best wishes to you and your husband,and hope to hear from you


  • Hi Margaret, Thank you for coming back to me. I am so sorry to hear that this took so long to diagnose. Richard was lucky with his diagnosis which may have saved him. I am interested to hear how you got on with Azathrioprine which is what Richard is on now. Did it have any side affects?



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