Is it possible to recover from vasculitis or is it a life sentence?

I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines I was diagnosed with vasculitis. After an angiogram I was told it wasn't cerebrally based, although my symptoms seem to be similar to other cerebral postings, but no further diagnosis has been made. I have been put on steroids and my eyesight and mental functions have returned. I have now reduced from 60mg to 8mg of Panafcourt but due to stress, I am sure, have had a bit of a relapse and am advised to increase my does again. At one stage my neurologist indicated it might be possible to recover from this disease. Can anyone tell me if this is possible or are we condemned for life?

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  • Hi Bobs sadly there is no cure currently, but with close monitoring and a selection of meds to treat respective symptoms ,good outcomes can be achieved. I have Cerebral vasculitis and was very poorly in 2005/06 and thankfully at that time made a good recovery to the point that 2 years later my then neurologist discharged me without telling me. I am now advised that once any form of vasculitis is diagnosed the medics should never assume a cure and discharge you out of their care. I had four and a half years in a very good remission. However in May 2011 i became critically ill again and went back onto 60mg Prednislone under a new consultant. i am still on long term sick leave but much improved and currently very slowly tapering down my meds. And the signs are looking good again that i am reaching a more stable stage hopefully not med induced. Before getting to this stage i have twice since last summer attempted to taper down the meds but unsuccesfully. But i am keeping fingers crossed we have cracked it this time.

    As vasculitis is a rare condition it might be worth diplomatically questioning what previous experience your treating professional has and ask them to supply you with some literature. Other sufferers will understand where i am coming from with this. It is not about appearing 'cocky' it is about having a healthy knowledge of what you are dealing with , and if you are not happy with your response ask or use this site to locate a professional in your region who will offer you more information and ultimately better care, eventually you start to get a better feel of what to expect on a daily basis and if you have a responsive/sympathetic professional on board you can work together as a team with your best health interests a priority. Just as a matter of interest and i am not medically trained there appears to be many parallels with your symptoms and mine. This would make me question your current diagnosis. Looking on the bright side and to answer your question vasculitis is for life. But there IS life after vasculitis.

    Hope this helps and good luck with everything

  • Hi BooBoo 39, thanks so much for your response. It's such a relief to be talking to someone who has gone through something similar to the terrifying six months I have just been through. My neurologist said I would be dead by now if the medication hadn't worked. Re the diagnosis. Did you have terrible headaches in the beginning and did you lose eye sight or memory or clarity of speak. My neurologist said the Vasculitis had caused inflammation of the brain which in turn caused these conditions, but that the vasculitis was lodged elsewhere. He said it wasn't Cerebral after a brain angiogram showing all the blood vessels to be clear, however I had just begun steroids so could this have created confusion? And my MRI evidently showed there have been tiny bleeds in my brain, but again I was told this was from the inflammation. If it is cerebral does this mean we are heading towards dementia?

  • In 2005 i initially had one continual energy sapping headache like i had never ever experienced , crushing would not even start to describe it. I think if i could have put my head in a meat grinder it would have been an improvement. After suffering this for several days i went blind in my left eye. Thanfully after approx 8 weeks my sight gradually started to return and for a short while after this the headache lessened in intensity. But a short time after this it had become obvious to my close friends and family that i was not always remembering things. Around this time i started with flu like symptoms and within 48 hours was in hospital with pneumonia. Never before even had a chest infection. And always been ridiculously fit. From this time although supposedly getting some improvement from the pneumonia i was now desperately tired all the time. And soon again got pneumonia this time coupled with very painful pleurisy. All this time bouncing between constant but normal pain level headaches and horrendous chop my head off pain. According to my diaries and notes i kept i apparently had been told i had collapsed and complained to onlookers i felt poorly. From this day it was obvious from my copius scribbled notes on anything i could find to write on that i no longer had the capacity for short term memory or indeed encode this info to new long term memory. From May2006 to Dec 2009 i have no memories at all just a black hole.If i am shown photos from this time apart from realising how tired drawn and skinny i had apparently become it also feels like someone has air brushed me onto the picture because i have no recollections of being there or having the picture took...Scary!! It was this collapse in 2006 and my obvious extensive memory issues that prompted the professionals to undertake some serious testing. The first MRA/MRI showed areas of brain damage where in there opinion the brain had been starved of oxygen. This was after diagnosis some time later explained that the severe memory loss was caused by the vessels inflamming to such a degree that the blood carrying the oxyen to supply the brain could not get through. IOne area severly damaged was the hippocampus the area of the brain that deals with sorting/encoding short term memory and ultimately long term memory. Another area damaged dealt with executive functioning(ability to plan,prioritise and organisational skills). Despite the severe memory issues and still undiagnosed by autumn 2006 i was back at work but sleeping every hour i was not according to my notes and my sons accounts. I was diagnosed ironically in early 2007 . I was still tired but continued to work and despite the cognitive damage built up my fitness and stamina to play sport at a top level in my role as a professional sports coach...I am told my initial fitness saved my life in 2006. I continued to feel not right each day as i woke and always very tired but pushed on convinced i had beaten it. That was until May 2011 when everything took off again big style. Weight loss, flu symptoms, weird sensations in my head, coupled with horrendous pain also this time pain in my spine to the point my mobility was severly affected. But this time i also became confused disorientated and struggled with speech/asphasia. For 3 days it was very close whether i lived and then with high doses of prednislone, morphine and other pain relief the fight to recover began again, now i am much stronger on a much lower dose of drugs and still have days when fatigue impacts on my speech,balance and memory but on the whole looking at a much brighter time ahead again. I am also under the umbrella of Addenbrooks now and Dr Jayne and his excellent team and also have the support throughout of a very understanding GP who acts as the hub in the medical wheel....

    Sorry about the essay hope this helps

    Jo.

  • Thanks for sharing your story Jo. I am going thru some similar experiences. I am wondering what medications did they put you on besides steroids? Thanks for all your info I am going to talk to my rheumy about the blurred vision and memory problems. For me they start towards the end of my work day and my vision becomes blurry and I have trouble finding my words. I know there is something going on up there in connection to my Lupus and my suspicion is it is vascular but of course dr's here are not very open to any interpretation.

  • I'm another cerebral vasculitis patient. I fell ill in 1994, aged 22, and initially my disease looked like ME. Then it looked more like MS, as my range of neurological symptoms increased, and started to include typical MS-like things like severe bladder incontinence. I was rediagnosed in late 1997 with cerebral vasculitis.

    As Jo says there is no cure for vasculitis, but treatment aims to put it into remission. Sometimes that can work permanently. Sometimes it works for a while, and the disease comes back. But there can be good outcomes.

    I'm a bit concerned that you've only mentioned steroids for your treatment. Are you taking any immunosuppressants? Normally these are needed as well in severe vasculitis where a major organ (in your case your brain) is affected. Steroids alone are not enough. And such immunosuppression, which reduces the amount of steroids that needs to be taken to control the disease, may need to be taken long-term, for life, as a "maintenance" therapy, to control the disease, and try to stop it coming back again.

    If you click on my user name you will be taken to the page about me here and can read my blog posts about my experiences. My form of cerebral vasculitis has turned out to be quite nasty. It behaved nicely initially post diagnosis, but relapsed big style in 2004, and we've struggled to control it since.

    But I'm happy. Must be bonkers. But happy!

  • Thanks Vivdunstan, I will go to your blog now. I will ask my Dr about Immunosuppressants. Does this mean we have something like AIDS where we have to be very careful not to get other infections because we have reduced immunity?

  • Sort of, ish. AIDS is where the disease causes a deficiency in the immune system. In vasculitis, which is an auto-immune disease, the immune system is over-active, causing inflammation in the blood vessels. Steroids are very effective at treating it, but aren't enough on their own. That's why people are typically prescribed immunosuppressants as well. This does have the effect of lowering your immune response to infections, because of the medication you have to take. But, generally, it isn't a big problem. You can get infections and deal with them, just with some more difficulty / longer time-scale than healthy people. People who are on immunosuppressants long-term, which includes transplant patients and people with arthritis too, are recommended to get the annual flu vaccine, and should avoid people with chickenpox and shingles. But otherwise you don't need to take precautions.

  • Thanks very much, that's slightly more cheerful than I was anticipating

  • Hi Jo, Thanks so much for that. Your story is horrendous, and terrifying to think I am only just at the beginning of this kind of journey. Re diagnosis: the difference I have experienced is that it began with 4 days of severe stomach pain, (I have had a stomach and gut biopsy with no evidence of vasculitis) and similar head pain, but I never had flu type symptoms or lost weight, my appetite remained almost normal and I haven't had the major fatigue you describe. Do you think any of that rules out it being cerebral. The will to work remained but I just couldn't do anything, even think, or my head would be raging. So sorry to keep asking questions but it's a great help to hear your experiences. Even though the pain in my head has gone it feels a bit like it is in a vise most of the time, as if there is pressure squeezing my brain, and if I do any exercise at all it gets worse. I too was very fit. Swam nearly a mile a day and that kind of thing, but now if I even sweep the path the 'head thing' gets worse. Why does exercise make it feel worse, and do we ever get back to normal for periods? Has your memory remained bad or has it returned? Do you have any idea what caused you to get the condition and what made you relapse? Thanks so much Bobs

  • Hi Bobs

    I have unclassified vasculitis so get lots of symptoms from all of the varieties including cerebral and intestinal. I lost a huge amount of weight when I first got bad, lost half my body weight in 6months and nothing would stop it. I also get the awful flu symptoms without the flu. The headaches and pain are awful as are the stomach cramps and muscle cramps. I take painkillers daily to keep the pain manageable but we are all different. As BooBoo says you need a good consultant that you trust and a good relationship with your GP. My GP admited early on in my illness that he had not dealt with anything like this before but he has proved himself willing to learn and knows that when I go in he has to throw the texts books out of the window, it's a learning curve all round but don't give up hope that's the worse thing you can do, as one door closes another opens. I take Immunesuppressants and steroids.

    Tracy

  • Thank you Tracy, I didn't have the flu type symptoms you did but did have similar head and stomach pain. I have been told it wasn't cerebral yet I am identifying with a lot of what the people with cerebral V are describing. And the biopsy's from my stomach are negative so it doesn't seem to be there. Does it matter that your vasculitis is unclassified, or is it important to find out what kind you have? Thanks Bobs

  • Hi Bobs

    There are other types of vasculitis that can cause similar headaches one is PAN I have a lot of the symptoms from that and all the others just because they have done biopsies doesn't mean it's not there. It has taken me years to get anywhere near a diagnosis, I also have connective tissue disease (another autoimmune disease) and raynauds amongst others. Not everyone fits into the diagnostic criteria Last time I saw my consultant I was told of the vasculitis classifications, the description went like this: "If group of rheumatologists are put into a room and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria and therefore remain unclassified"

    Tracy

  • I never lost weight due to my cerebral vasculitis, which I've been battling since 1994. If you click on my user name you can see my story. Your case sounds very cerebral, and if you have inflammation in the brain I don't know how it can't be described as cerebral. There is a question over whether it's primary or secondary, i.e. whether it's just in the brain, or more widely. But that doesn't stop the need for treatment.

  • Hi Bobs

    As the others have said vasculitis tends to be for life but with the right treatment, giood medical care, and the right positive attitude, life can be good. The initial stages are frightening and the drugs aren't nice but we've all been there and here we are to tell the tale.

    Many of us are on long term "maintenance" drug therapy, some of us have gone through the stage you are at, and now don't need any medial intervention, some of still need some drug intervention. As we often say, we are all different, the disease affects us differently, we have different drugs.

    You may find that you may have to make changes which you never thought you would have to make. Things you took for granted and did automatically might need some prior thought and organisation. If you were very active you MAY find that you cannot be as active. You may need to rest more. As you become used to your disease you will be able to gauge these things for yourself.

    You ask if it is like AIDS. Well, it certainly isn't AIDS. However, the immunosuppressants we take do lower your defences and make you more susceptible to infections. Therefore, it is a good idea to keep away from people who have colds or shingles. Live vaccines are something we can't have, but for most of us the flu vaccine is helpful. If you catch flu then the outcome can be more severe than for someone who has an intact immune system.

    Hope that, along with the other replies, helps. Best wishes

    PatriciaAnn

  • Thanks Patricia Ann, what you say is both comforting and terrifying. My family used to joke that I was made of iron I was so strong and fit, it's almost like you have to envisage yourself as another person that you don't know yet. The information I am getting from you all is fabulously helpful.

  • Hi Bobs, you talk about vice like pressure/pain . it sometimes feels like someone has draped a wet cloth over my skull and is slowly tightening it up to a point of unbearable pain. Other times like a band around my forehead pushing into my head with unrepenting tightness/vice like. When i am in the midst and worst part of a flare i would not have energy to walk let alone exercise. When the drugs/ pred starts to take effect and whilst the pain is still very evident i have found that some exercise walking/pilates at my own pace is actually beneficial for me despite the pain. Sometimes just forcing enough energy into your body to drag yourself outside is a big buzz to feel part of the world again. My remedy anyway. My memory is no longer in a five minute loop but still has issues and becomes worse the more tired i become. I believe my CNSV was triggered by the stress of a car accident. My current flare (started May2011) literally came out the blue, except for feeling progressively more fatigued than usual the previous month. Thankfully was full fitness April 2011 just before, i am told this level of fitness again saved my life. I personally feel my overall fitness and life style has been my biggest ally throughout all this. As Pat echoes everyone is different and the same condition can present itself differently to different people. The main thing is to have a healthy knowledge of how your own particular form affects you. Unfortunately this can mean the first few months even couple of years can seem scary and daunting. This is where this site and Vasculitis UK have really helped in recent years. When i was diagnosed after 18months of illness and shed loads of not always pleasant tests i finally got a diagnosis. But that ureka moment was short lived when it became apparent that no one not even the medical profession i was faced with then could tell me what CNSV was or indeed what implications there were for me. This site did not exist then and Vasculitis UK was still Stuart Strange trust and was doing its best to inform sufferers with the little information available at that time to them. Ultimately you will begin to be the best medical professional incharge of your care, draw strength from this and trust your confidence to ask questions if you dont feel your concerns are being addressed.

    Hope this helps

  • We have many similarities with this 'vice like' feeling. It is beginning to sound more and more like my condition is Cerebral V? Do other kinds of Vasculitis have similar head pains as you describe or is it just Cerebral. The only thing that seems different to everyone's stories is that I haven't lost weight and so far don't have fatigue. Is it possible the steroids provide stimulus? Finding Vasculitis UK has been a life saver for me. I have learnt more from all your stories than months of tests and doctors. Up until finding you it has been a very lonely business. Thank you, Bobs

  • Hi again Bobs, no worries on the information side thanks for taking the time to read our info.My weight loss in 2006 was significant and unexplained and i had my usual appetite. At this stage i was not on any significant meds and no steroids because no one had the foggiest what was wrong with me. So i can only assume the early stages of CNSV was affecting me in this way. This time round for the last 10 months and on very high doses of pred/steroids i should have been bouncing off the walls but my fatigue was all consuming at worst difficult to have enough stamina to sit up long enough to feed myself and eat and only capable of a few weak unsteady steps. My fitness is improving daily now and on a good day can walk my dog 2-3 miles (maybe twice a week) looking forward to getting some increased immune system so that i can get back to swimming again.This current flare up has had spinal involvement including pain and stiffness(inflammation in my spine) whereas previously it only appeared to affect my brain. I know that other forms of vasculitis suffer cognitive impairment to differing levels, memory , confusion and even our good friend ' John Mills' writes about his brains many foggy days. But i am not sure how many sufferers experience actual pain in the cerebral region. it might be worth posting a general question out there... re this point.

    On a brighter note for my individual case my MRI/MRA's have established that my brain damage is only taking place at the worst point in a flare and then stays at that same level or some improvement with coping stategies until the next flare so it is not causing ongoing progressive degeneration like dementia for instance. Something i was very worried about for a long time.

    Again hope this helps!

  • Hi all, have found this question and many subsequent answers really relevent to me too and its so good to hear we are not alone. I too joined the site only in the last 6 months or so and would have been lost without it. My vasculitis has been diagnosed as curtaneous caused by my sjogrens and sle but I have also suffered many neurological symptoms and have just had the result of a lumpar puncture back showing inflammation within my CNS, I had had 2 MRI's done, one with high resolution dye which had come back normal so brain involvement was ruled out but it seems I still have many unanswered questions. I get peripheral symptoms mainly which affect all 4 limbs and makes them numb and at times shaky but also blurred vision (which has been put down to a cateract caused by steroids, but seems to be so much worse some days), I get confused, have dizzy spells and am exhausted so much of the time.

    Its good to hear that things do improve for so many people, I used to be so sporty also and have a really demanding job and now a short walk up the road is a challenge and on some days an impossibility. Sorry I can't answer the original question as it seems we are in the same position but this site gives us all hope.

    Jenny

  • Hi, yet another dianosed with Cerebral Vasculitis and yet again a different story, my CV began with excruiating headaches and vomiting and neurological symptoms. I was admitte into the local hospital twice for a week each time and sent home with a 'simple ' headache each time until I went to another hospital in the North near my family and after my first MRI and other tests including an angiogram, I was eventually diagnosed with CV resulting from inflammation of the Carotid arteries. This also gave me a major stroke and I lost all my left side due to damage particulary in the right side of my brain hence all the memory, concentration and processing problems I am now left with?

    So your headaches sound similar but I am not sure about these in other types of Vasculitis? I had Cyclophos infusions with Steroids initally and then oral immunosupressants. I guess life long but maybe life but with a difference depending on what is affected, however I was informed by my neurologist that being on immunosupressants for ever is not a good thing as they have their own problems such as increase in bowel cancer among other things? Although mine is in remission at the moment, the probable life long difficulties relate to the brain damage I suffered so its a matter of learning to accept life differently and to adjust, somehow? With me the neurological fatigue is a huge issue but you say you don't suffer with this fortunately

    Again probably not an answer to you but amazingly all the CV sufferes have a different story but its great to read everyone's experiences as this is so rare and to realise we are not alone after all!!

    Good luck in getting a diagnosis

    Sarah

  • Immunosuppressants do have long-term health risks, but uncontrolled cerebral vasculitis can kill, and do so very quickly. So it's a case of weighing up treatment risks against the risks of not treating strongly enough. For me it's a no brainer. I take all the drugs they'll give me! And I've had some horrible side effects to deal with, particularly in the past, very bad nausea/vomiting from the chemo drugs, which went on for years. And huge weight gain from the steroids (40kg increase). But they are keeping me alive. And that is the most important thing.

  • absolutely yes they keep us alive and its so unfair that the steroids very quickly put on the weight and yet now I am off them it certainly doesn't come off at the same rate!!! and it is hard to exercise with such a lack of energy as apparantly the steroids have damaged my lungs and now it is much harder for me to get sufficient oxygen than normal! But like you say we're alive thank goodness!

  • Hi Bobo,

    I don't want to repeat anything anyone else has said but one Doctor, at my dialysis unit, did say that 'remision/recovery' was possible....The experts tell me that this is wrong! So, I'm afraid, you will, like me, have to 'draw you own' conclutions. Sorry if this is not much help!!

    Good luck anyway

    Andrew

  • Thanks everyone so much for such valuable responses. I am gradually building an understanding of this miserable disease, and from you, am learning how to face it

  • My husband started with very bad headaches in September 2012 he went to his local gp whom said it was a virus an to take ibuprofen and drink lots of water which he did that was on the Monday and on the Friday morning he got up and you could clearly see he had had a stroke left side of his face was drooped his speech was slurry his left arm draped by his side no co ordination I got him in the car and took him straight to our local a n e they admitted him to a ward but to my horror they discharged him at 7pm the next night without doing any tests or MRI scans the following day I had to ring 999 as he was vomiting badly no idea of where he was who me and his 2 sons where when we had got to the hospital they accused him of drinking (he had not touched a drop ) they addmitted him again and kept observing him for a week he rapidly went down hill went into a coma like state on the Sunday I begged them to transfer him to the hallamshire hospital or to get someone who knew what was wrong a doctor from the hallamshire came on the Monday and got him transferred on the Tuesday morning they did test after tests on him and came back with cerebral vasculitis of the brain they put him on cyclophosimide n steroids and other medications he finally came round but it had took his right side but he got full use back then it struck again this time taking the use of his left side and his speech he was in hospital for 7 months we finally got him home on the 8th of April this year he's got a little movement in his left leg and arm and can say the odd word now I don't know how the outcome will be with time he's 24hrs care but the one thing we are greatfull for his that he is alive and now at home with me and our 2 sons who are 16 and 21 he is still fed through a peg in his stomach but we are working on strengthening his throat so hoping one day he will be able to eat through his mouth again he lost 7stone but his gradually putting weight back on I'm really frightened that it will strike again

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