Vasculitis UK
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Can anyone help me my 50 yr old husband got struck with cerabal vasculitis on the brain in september last year he's had all his

Cyclophosimide course and he is now on his second month of mycrophenolate and 5 mg of predisolone when the vasculitis strook him it took away the use in his left arm and leg and his speech he's fed through a peg in his stomach but he was doing so well but in the last couple of weeks he's been crying a lot and wanting to sleep it appears he's giving up on life i know he carnt cope with being like this having to have 24hr care and doubly incontinence when he was such an active person who couldn't sit down for 2 minutes we have 2 boys aged 21 and 16 its heartbreaking for all of us as we don't want him to suffer but we don't want to lose him as well as anyone gone through this and what happened good or bad as my head and heart are in turmoil but i have to be strong and put on a brave face for everyone

11 Replies

Chelsea - I'm so sorry to hear this and I can't advise as someone who's been there (except that my husband had nearly terminal cancer 20 years ago, without treatment or if it hadn't worked he's have lived 6 weeks, and I do know how your head and heart are feeling) but there are a few things you can do if you haven't already done so.

First of all - no you DON'T have to be "strong and put on a brave face for everyone". For the boys and your husband maybe - but if you look too strong and coping you won't get the help YOU desperately need. Noone offered me help because they thought I was doing fine - tell others and ask for help. Whether it is a meal ready for the oven, a cup of tea and a shoulder to cry on or someone driving you to whatever, it all helps a tiny tiny bit. Little drops of water, little grains of sand and all that.

And you need support - in cancer there are the Macmillan nurses who provide info and support for the family, I'm not sure who would be appropriate for you but there must be someone on here who knows??????. There are charitable groups for other illnesses. Has your husband got a named nurse? She should know. Or CAB may know. The boys also need support - neither of them are old enough to cope alone. I was 17 when my father died suddenly at 49, my brother was 12. I was expected by all to do things that were way beyond my years, my brother got the sympathy.

If I were there I'd give you a big hug and make a cup of tea - not there to do either but find someone to do it in my place.

All the best


Dear Chelsea

I am so sorry to hear about your husband's illness and the awful struggle you must be suffering.

Could I suggest that you contact Carers UK as well as your GPto see if they have a local branch or the very least a local helpline. In myn experience they are an excellent source of help.

Good luck I do so hope that he makes progress

With love and thoughts


Hi there I am so sorry to hear what you are all going through. My approach is different and its not for everyone.I am nearly 48 now and was diagnosed with cerebral vasculitis in 2004. I find working with medication and alternatives has helped me manage my condition. I posted a blog in March 2013 about how I help myself. I do work in a palliative care unit voluntarily working for Macmillan day care. I am a voluntary therapist I can do either reflexology or reiki for them. It is reiki that is the most popular and the results are amazing I work with patients with all kinds of conditions. I hope things improve for you soon ! There may be a Macmillan day care unit near you? It doesn't have to be cancer to go to the units they help lots of other conditions. If I can be of any help just let me know. Regards Diane x


Hi Chelsea,my wife of 54yrs has just been diagnosed with CNSV after 3year's of test's,she is at present on a course of chemo,steriods,pregablin,mst.Although our live's have been hard these last 3yr's due to my wife's deteriating mobility and consistent pain it doe's not seem to be in the same catagory as your husband's.However we get a lot of help from social service's ie carer's,we also get help from occupational therapy who has helped council the family throughout and has provided a great deal of help,our initial point of contact has allway's been our GP.There is help out there and i know how difficult it sometime's is to ask as you feel it is your responsibility to nurse the one you love,it did take me some time to realize that not only did my wife need help but so did i. If you would like to contact me you can email me at,i would be more than happy to help where i can.All the very best,our thoughts are with you.Carol and Paul


Hello Chelsea , sorry to read your husband is suffering this little known condition. I too have CNSV and have survived two critical flare ups and am currently recovering from my most recent flare of June 2011. I would suggest that you request your current treating hospital to contact the vasculitis clinic at Addenbrookes hospital in Cambridge to compare meds and treatment in case another angle can be taken. Because Addenbrookes is a specialist vasculitis clinic they also have access to medical info of patients in Europe essential for this form of vasculitis being one of the rarer and less medically known. Sorry I cannot help you any further at this stage. Just to say I will be thinking of you all and send you strength .


Thank you everyone for sharing your experience s with me steves got admitted back into the royal hallamshire hospital on Friday tea time he's got another infection but yet again they do n't know where the infection is his chest and lungs are clear his pulse and heart rate are very high and his breathing is not good i wish everyone of you all the luck in the world for the future love and hugs to you all thank you so much xx


Only a small reply, but I wanted to say ... thinking of you both and every good wish for Steve while he is in hospital.


Hi Chelsea, I have regular mini strokes and the first one was my worst (about 2 years ago) and left me feeling devastated of my condition knowing what it was like to no longer be "a Normal Person" (if you can call it that?). Firstly I support everyone idea's and that you and your children all need support and a 3rd party to talk to separately or someone who you can express all your emotions to and kept private.

I am now looking at it from your husbands position and what I found in my case ( although I appreciate he is in a lot worse position than I was). I think he needs a therapist who can break him through, everything he is facing, as he will have a mountain of new problems building up in his mind (well I did) as it is all new to him and losing things like Dignity, communication etc.. makes you lose all your "confidence" and "strength" in trying any more. I was caught early and saw a Speech and Language Therapist (who was fantastic). She started with me on I feel a physiological aspect, to see what was going on in my mind???.. They of course are trained to communicate with people that are unable to speak, to someone like myself who could still speak but could not communicate properly 1. Forget what I was talking about 2. Could not find words 3.Forgotten objects and all this put so much pressure on me that when trying to communicate with the Therapist I would "crack up and cry". I had lost "Confidence" in talking to anyone. We started off with picture cards as children use at school - it seemed awful but it worked for me. I had Once to Twice a week a therapy session. It worked wonders for me and she taught me that people out there on the street, if you explain you have had a stroke, "will listen" and I can say "Do Listen!" and support you all the way. I was taught that what ever doctor or appointment you go to everything must be written down from both parties. It seems silly but if you are only allocated 10 - 20 minutes it is easier for the consultant to read the problems and for them to try resolve the problems.

Tools I used:

1. Mini iPad, this may be a useful tool for your husband to communicate with? I play a lot of children's games on it like matching colours, finding numbers/ word search, to help the brain, plus it takes away a lot of time of your churning things over and over again and becoming "Frustrated" "Confused" "Annoyed"

2. I have a card from my Therapist from Speak ability, 1 Royal Street, London, SE1 7LL telephone 080 8808 9572 which you can present to someone before hand, it states


As a result I have APHASIA.

This means I find it differ cult to SPEAK, READ or WROTE, especially under pressure.


Thank you

3. My partner is able to interact when I forget what I was speaking about to people and bring the sentence back - so hopefully your husbands speech will gradually come back, you and your sons will need to listen carefully and build his confidence up. The main things where for me: was I would forget what I was talking about and unable to find a word.

I am still having mini strokes and my last one ended yesterday! but was unable to reply to you message but today slowly I am getting there - you may find in here that I still word sentences the wrong way around but think this is a good note? as I have deleted it several times, my strokes last from 12 -36 hours and we monitor them and if they get worse go to a GP or A&E but nothing much they can do or understand Cerebral Vasculitis and once they see no blood clot in the brain they send you home.

If you would like to talk to me my email is I do not talk on the phone as this is differicult as I can not see the person talking! I hope there is something here that may help?


Be very proud of yourself and you are an inspiration to a lot of people we have got a i padwith lots different things for steve also a alphabet chart I do exercises with his mouth and throat and make sounds i learnt a lot with my job (working for social services with adults with learning difficulties ) and our 2 boys are great with him too learning him to do things steve and myself wish you all the luck in the world with your recovery keep safe xx


Dear Chelsea

Very sorry to learn of your husbands illness.

I was 49 when when I was struck by this dreadful disease and your narrative could have been that of my wifes going back to 1997, but for sons read daughters albeit a tad older. My illness struck November time and a Brain Biopsy on Christmas Eve proved it was not a brain tumour and they then found it to be Cerebral Vasculitis.

If you do a google search on "Systemic Vascilitis or Not That Is The Question" the 49 yr old man they speak of is myself. The web site is that which Doctors use to communicate difficult cases and their treatments, but since it is on the web you can see for yourself.

Your husband is in a seamingly long dark tunnel but there is hope, good hope that he will make recovery, these words are proof that you can recover. For myself I drew inspiration from my daughters, whilst communication with others was very poor I recall sitting,laying in bed thinking this is silly, I was young with two girls and wanted to see them married and produce grandchildren.This was a strong mental motivation to fight the disease, my daughters were the light at the end of this long dark tunnel, initially feint and distant but as time progressed grew brighter.

I too use to fall asleep easily, indeed I recall waking up to my saviour consultant who was speaking to me, he was outlining the course of treatment he wanted me to take, Chemotherapy. There were other doctors who disagreed and would have been happy just pumping me with other and more medication. Thankfully I chose his route to health.

I was in hospital for 6 months in all with many setbacks which with a good wife and inspiration I overcame

A "side effect" of the brain damage, front left nodes is very poor short term memory and possible Epilepsy, there again I think I am very fortunate as this problem for me has been controlled by Gabapentin completely since 1998.

Sorry to speak so long about myself but by relating bits of my illness and that I am here to talk about it I trust will give reason to believe in the future.

The Consultant who wrote the article has since retired.

I wish your husband well and a good recovery, I trust as he improves then for you and the boys the days will be so much the brighter.


Hello , I am Georgiana, I am 75 and was diagnosed with Cerebral Vasculitis in 2010. I was diagnosed very quickly, so did'nt suffer any long term damage. I was treated with cyclophosphamide intravenously for six months + initially intravenous prednisilone then Methotrexate and oral prednisilone. I was stable for 3 years,had a flare, had my medication increased, and am at the moment OK .I hope your Husband is progressing well .it's a long haul but I'm sure he'll improve in time. My thoughts are with you all.


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