Help needed!

Would you all be so kind as to list your top 5 most debilitating Vasculitis symptoms for me?

Rate things like, quality of life, impact on work/home life, physical symptoms etc etc. Also would you indicate what type of Vasculitis you have and how long you have had it and whether you are male or female. No other details are needed and all information is confidential and I would only give it to the student delegates on the day.

Next Tuesday I have the opportunity to attend a teaching course for doctors and nurses at Oxford university and I would like, aside from telling them my own symptoms and how my CSS affects me, to tell how it affects others also.

These are the Dr's & nurses of the future. So PLEASE, if you have the time, these statistics will be HUGELY helpful to them.

Contact me privately, if you do not want to divulge information publicly.

30 Replies

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  • Just to clarify, these are NOT student Dr's & nurses, they are fully qualified.

  • My 5 worst symptoms, out of a very large number of neurological symptoms, are, in order from worst downwards:

    1. Extremely severe bladder incontinence (going to bathroom up to every 10 minutes at worst, all day, all night) due to brain damage. Have to wear incontinence pads permanently since early 20s. Disturbs sleep frequently, even with anti-spasmodic drugs to reduce the effect, and prevents any sort of normal existence/going out since I can never be too far from a toilet for any reasonable length of time.

    2. Sleeping for up to 17 hours every single day due to brain damage. Means unable to work, and spend much of life in bed, sleeping, totally out for the count. Don't even hear doorbells. I even slept through a neighbour's car rolling into our house wall once!

    3. Extreme fatigue. Even when awake I have to pace myself and can only do things for short bursts and then need to rest afterwards. Again this prevents any form of work. For example if I have a medical appointment on one day I need to rest at home the days before and after.

    4. Often as though heavily sedated/tranquilised, struggling to retain consciousness. This is a new one for me in last couple of years, and it's worsening, and is a very bad sign of worsening brain damage and ongoing disease activity and progression.

    5. Greatly reduced mobility, always having to use 1 stick, sometimes 2, sometimes my manual wheelchair. This has been a problem since 1994. Means I cannot go out on own, cannot walk far, and need a lot of help to get about. Also very unsteady / can't control limbs properly.

    I have cerebral vasculitis and have had it for 18 years now.

    I am female.

  • Thank you SO much Viv. Brilliant! This is exactly what they need to know.

    Here's hoping they will take note, inwardly digest and put into practice what they learn!

  • Sorry Viv ( I was so excited someone had replied to my plea!) I forgot to say, you're obviously a trooper to cope with all you have on your plate. Respect to you!

    I think you're a star! X

  • I asked John this question..he is not really very good at answering this sort of question so here goes :-

    Male... 11.5 years.... Wegeners Granulomatosis (GPA)

    As Vivienne has done the worst first.

    1) The WG caused John to have a DVT in 2008 this caused his leg and ankle to swell and become very heavy, the swelling has never gone down (John has to take Warfarin for the rest of his life)..... this has resulted in quite a lot of pain in his lower leg and foot especially if standing for a little while.. unable to walk for long because of this... this is sometimes very difficult for John when attending meetings and seminars ... Both legs and feet take a little while to get going in the morning....

    2) Fatigue - This varies from day to day depending on the demands of the body and mind. John calls it his duracell moment...when his battery needs re- charging.. it can happen in the middle of the afternoon or 10 o clock at night.. some days it may not happen at all.. if it happens he sleeps... maybe for an hour...maybe for a few hours...

    3) The WG caused damage to John's lungs.... he soon gets breathless walking up hills or for long distances so combined with the DVT problems walking and standing for any length of time is not what John likes to do.

    4) Not sure if this counts..but John was treated with long term Cyclophos because no other treatment would work to control the WG...he was taking Cylophos for 5 years until Mychphenolate came along The Cyclophos caused a Carcinoma of the bladder in 2009 and 2011. Three operations and a blast of chemo sorted the problem out, but for 3 years it affected John and caused some problems. This last year he has experienced no problems and has checks every 3 months.

    5) Probably last is weight... after losing over 2 stone at the beginning when the Doctors were trying to decide what was wrong with him.. he soon put it all back on and some more... he struggles to keep his weight down probably due to lack of exercise BUT his appetite seems to have increased and he soon gets very hungry if he does not eat for a couple of hours or so..... even after finishing the prednisolone nearly 2 years ago....

    Hope this helps

    Susan

  • 60 yr old female, 10.5 yrs WG

    1, Extreme fatigue. I need to pace myself very carefully. If I have a busy day it can take anything from a couple of days to a week to get over it. This isn't just feeling tired but complete exhaustion and apathy. I am not able to work.

    2, Diabetes caused by constant prednisolone over 10.5 years. This means injecting insulin,it has made me slower and weaker, and caused weight gain.

    3, Problems with statins. I feel much better without them but I keep getting put back on them, causing muscle and joint pain.

    4, Breathing problems which have worsened in the last year. Also kidney problems which although stable at the moment, leave me with a very low kidney count which means there are a lot of drugs I can't take.

    5, This might not be a symptom but it does affect me. The stress it puts on family and friends. They are all wonderful but I know it's not easy living with someone who is ill all the time. They worry dreadfully about me, which makes me feel very guilty at times.Luckily, the only thing WG hasn't affected is my sense of humour.

  • I have P-anca Positive, male, 49 years old, had symptoms about 15 years

    1. Diagnosis???? Firstly signs of Lupus???.. (Doctor said see how it goes). New doctor biopsy Leukociastic Vasculitis - Kingston Hospital. Sent by my Neurologist at Atkinson Morley St.Georges Hospital to see their specialist - Biopsy now P-anca. No medication seems to be working apart from Cyclophospmide - tried Azathioprine 250mg Daily, Prednisolone 20mg weekly, Citrizine Dihydrochloride 10mg, Methotrexate 225mg weekly, Presently on Methotrexate 250mg weekly & Azathioprine 25mg daily. Cyclo worked but not allowed to have it over 6 months. Doctor unable to prescribe Rituximab as one of my blood counts is normal and it is only allowed to be administered if this level is low and too expensive if it does not work and end of year!

    2. Tiredness extreme! Mornings OK but by 14:00 on the down turn. Reduces lifestyle going to shows etc.. Unable to concentrate long ( stroke 2011 from Vasculitis, inflammation at stem of brain, not blood clot), so lose plots in Television etc.. Speech affected and great difficulty speaking and maintain conversation.

    3. Sleeping disturbed throughout night due to degenerative spinal Problem? once again no name given but 2 operations on neck -cervical discectomy and fusion C3&4, C5&6 1991, Chronic pain, Choking on food. 14/11/2011 C5/6 and C6/C7 Foraminotomies. Go to bed about 20:00 and awake 4:00.

    4. Medication over 30 tablets daily for multiple health problems therefore I have divided them into 4 times a day of which are approximately 6:00, 12:00, 20:00, 24:00. Reason for 24:00 as painkiller from 20:00 run out and top up for further sleep.

    5. Weight Obese! as a child very healthy, extremely fit rowed for country etc. now when I exercise it brings on out breaks of Vasculitis, monitored over years - gym, swimming. Now only manage to walk, which reduces out breaks.

  • Female, WG for 11 years

    1) Decreased mobility. Can only walk on the flat and on some days have to sit down every 50 yds or so due to weakness of muscles (I'm only 53!). Maybe due to long term high steroid usage

    2) Tiredness. Some days have much more energy than others but when I have a fatigue surge I can sleep up to 3 hours during the day.

    3) Change of appearance. Steroids have given me cushings disease so, as well as being much fatter than before, my face is unrecognisable.

    4) Other Side effects - diabetes, high blood pressure, osteoporic.

    5) Inability to work - my job used to be a big part of who I was and so it has been hard to accept that it is no longer possible be that person again.

  • Thank you all so much for your comments. Keep 'em coming! I think we need to hit them between the eyes with all the info we can; hopefully it WILL make a difference.

  • Female, 64, MPA 3 1/2 yrs (2 1/2 yrs from diagnosis)

    The problems have changed in order over the years so this is how they are at the moment. worst first.

    1 At the moment I ache all over where the damage is, not in joints or muscles, more in the ligaments. Difficult to describe really.

    2 Nerve damage in left hand and both feet. Unable to drive as feet go into cramp and still unable to feel properly. Still drop things from left hand. Cramping in feet at night. I struggle to find shoes although that is just a nuisance as I live in trainers!

    3 Lack of proper sleep. Up three to four time a night. Sometimes just to go to the loo some times with cramp in feet.

    4 Fatigue, same as other people, usually comes on in the afternoon. Depending on how much I have done. Can take a couple of days to get over if I have not paced myself during the week.

    5 Fibrosis of right lung meaning can't walk up hills easily.

    As time passes these are becoming more of a nuisance as I am learning to adapt, but I would not be able to work (luckily I am retired) as I cannot concentrate, sometimes can't stand light and have to close my eyes. I admire all of you who are still struggling to work.

    Hope this helps a bit.

    Lynne

  • Hello Lynne. You are going to think I'm a crazy woman but have you tried corks for your cramp? It was suggested to me about 5 years ago. I was very sceptical but to my delight it worked. I used to have the most awful cramp, especially in bed. I put several corks between the mattress and bottom sheet at the bottom and side of the bed just out of reach of my feet. It was almost instant relief. It's supposed to be red wine or champagne corks and they have to be proper cork not those new plastic things.I often sit watching tv in the evening with corks tucked inside my slippers and holding a cork helps relieve cramp in my hands. I tell anyone who will listen about this, it works more often than not! I hope it works for you. Christine

  • Thank you that sounds interesting and certainly worth a try. Although cramp is the only way to describe the pain it is not like cramp in the legs. It is as though my feet have locked up somehow and I have to squeeze the feet to get them back in line. I really can't describe it as I am not sure what or where it comes from.

    I shall certainly try the corks. Just have to go round at Christmas and collect some!!!!! Hope everyone drinks wine!!!!

  • Here goes Iam 53 And havwe had wg for nearly seven years number 1 fatigue 2trouble seelping can be erratic can sleep properly then for no reason am awake for hrs for several nights, This obviously does not help the fatigue. Recently diagnosed with fibrositis in lungs So now breathlessness and am having to use wheelchair. 4 Pains in joints. depression

  • Male, aged 33, WG/GPA diagnosed December 2010 although clearly had it about two years before.

    1. Fatigue completely ruins my life. I used to enjoy rambling, cycling and gardening all now just memories.

    2. Pain in hip, shoulder and elbow makes my job as a taxi driver difficult when loading customers shopping or suitcases.

    3. My eyes become tired rather easily so I have to restrict the amount of night driving I do, this is not only annoying personally but also means I can no longer be a night cabby. The latter means a severe drop in income as at night I worked at a higher meter rate and also the roads are emptier so can get more jobs per shift.

    4. Just sick and tired of having to constantly take meds and having to ensure I do not run out at holiday times (Easter and Christmas).

    Jim

  • Female, large vessel (Takayasu's?)diagnosed January 2012, after about three years of unidentified symptoms. Query because of my age, but I don't fit GCA.

    In no particular order, as they say,

    1. Unpredictability. Never know whether I'm going to have a good day or a bad day. Inability to plan is bad for family and friends. Lots of unused cinema tickets, cancelled lunch plans etc.

    2. Lack of sleep. I am fed up with the shipping forecast and have a massive kindle bill, as I can still buy books at 3a.m.

    3. Bad hair, bad face, bad everything. Trousers fall down 'cos that's where I've lost weight, favourite necklaces unused; I can't do them up. Hair is horrible; thin, dry and straggly whatever shampoo or treatment I try.

    4. Inability to join in favourite activities. Can't help out with grandchildren in a crisis, as i dare not drive that far. Can't swim -arms don't work. Can't walk, though I used to be walk everywhere, including long distance trails. Can't do my usual voluntary work; too unpredictable and picked up too many infections.

    5. Effects of drugs. Not just Cushings, but also shaky hands, inability to remember chunks of the last few months, bad concentration and thoroughly bad moods. There are plenty more, but others can add them! I haven't dared ask my husband, though he has had to put up with all of them too.

  • Female - 55 yrs old - WG diagnosed April 2011

    1. WG caused my kidneys to fail. On dialysis for approx 1.5 months.

    2. Horrendous fatique some days.

    3. 4 stone weight gain due to medications. Depression caused by Prednisolone.

    4. Pains in feet, fingers and left elbow some days. Lack of concentration. Sleeping problems.

    5. The unpredicabiity of how this disease behaves. The time I have had to have off from work. Getting people to understand just how serious this disease is and how it makes those, with whatever type of vasculitis we have, actually feel which is not always how we may look. A horrible invisable disease.

    Sorry, gone way over the 5 things, could have said much more, but it all makes me so frustrated sometimes!!!

    Good luck with the course :-) x

  • Female, aged 48, Churg Strauss syndrome , diagnosed oct 2011

    1 fatigue fed up of falling asleep during films, only having half the energy I used to, had to reduce hours at work

    2 the unpredictability of it, never know how im going to feel, having to change plans, cancel arrangements, its tough explaining how you feel on inside to people when look ok on outside, used to love being able to do things spontaneously and it's difficult now

    3 mobility- it has affected my peripheral nerve in right leg and foot so can't walk very well. Used to walk everywhere and love dancing and was a gym addict

    4. Breathing problems, I'm asthmatic now and on aziathioprine so constantly worried about picking up bugs especially as work in a hospital

    5. I've put on lots of weight due to prednisolone. Tried fasting, lots of exercise in water and in gym - difficult to lose it and hungry all the time. Coming down on steroids and that's hard as it knocks me about making me feel unwell. Fed up of watching what I eat and never being able to have a spontaneous drinking session without seriously paying for it

    I realise in the scheme of things some of these may seem trivial. And I do appreciate they are people much worse off than me.

    Hope that helps and thank you

  • Hi Katie,

    Thank you and everyone else for the comments.

    I think that NOTHING is trivial about Vasculitis (I too have CSS). We all suffer differently, but we ALL suffer.

    At least WE know you aren't well, even if you look it. ;-)

  • Hello, I'm a 50 year old male who has had Wegener's, or GPA, or whatever the latest nomenclature is, since 2002. The WG caused a stroke which has also left less than the person I was. I also have stage 3 chronic kidney disease. Doctors tell me that my WG has been quiet for many years, and have gradually reduced my medication until today I am only on a statin for cholestorol and a blood pressure tablet, plus gabapentin which has been shown to work with thalamic pain. My top five problems are,

    1. Fatigue. I don't seem to be able to do anything without the need to sit down after a few minutes. By the end of the day I am worn out - physically drained. I have to walk with a stick, so my gait is wrong meaning that other muscles have to work harded than normal and therefore tire more easily.

    2. Pain. I have constant pain all down the left side of my body, especially in the lower back and left foot. I don't know if this is caused by the WG or nerve damage from the stroke. No matter what I have tried - various anti-epileptic drugs [which are supposed to be beneficial in smaller doses] to a TENS machine - nothing diminishes the intensity and constant nagging presence of the pain.

    3. Nasal crusting. Nobody seems to have mentioned this yet, probably becuse of the revolting natue of it. Yet for me it can be really problematic. Every time I seem to be outside for a while and then move inside, I have to go somewhere private [not always a simple option] to try to clear what can be a substantial quantity of nasal detritus. It is trully awful.

    4. Nose bleeds. I don't get these very often now, but they can just happen out of the blue. Particularly when I lay in a certain way. Sometimes I am jolted out of sleep in the night by the feeling of blood running down the inside of my nose. As an added bonus, blood stains on pillows can be difficult, if not impossible to remove.

    5 Lack of mobility. Again, I don't know if this is as a result of having vasculitis or as a result of the stroke.

  • Hello, Very happy to help with your request. Female and have had WG probably for 12+ years currently in remission as ANCA`s now negative but this is a life changing disease with what often seems like an unlimited impact on quality of life. In order of what is worst first.

    Fatigue – This is a constant issue, it is always there 24/7/365 to drag you back down, I try to pace but realistically have to force myself to do everything as experience tell me that if not I would never achieve a single thing each day. Some days I have to give up early often before lunch and by 6pm I cannot do another thing.

    Insomnia – I have tried everything holistic plus drugs from homeopathic to tranquilizers, have had umpteen sleep studies but still cannot get restorative sleep. I wake up exhausted every day. I could give up just for lack of sleep – but why should I let a disease destroy daily life – No I am a fighter and will fight until I cannot fight any more every day.

    Headaches are a joint second. Always above the left eye and immune to pain relief, when these come on I am incapacitated for 24hrs at least.

    Pain – back, shoulder, legs, nose, chest. You have to learn to live with it somewhere all the time. It is hard at 49 to have to ask someone else to help you dress/undress because you cannot move your arm or to cut your toe nails because it is too painful to do them yourself.

    Hormones – every since having WG my menstruation is another problem. My gynecologist says I am at the extreme end of the hormone balance. For me this means I expect to get knocked off my feet around every 10 days. Bearing in mind all this comes with chronic PMS everyone around me knows where I am heading about 5 days before and it takes me 3 or 4 days to recover before the whole thing starts again! No one is sure if a full hyst will sort this so I staying intact for the time being!

    All the best

  • Female, 63, diagnosed with MPA 4 years ago

    1. Loss of vision in left eye and annoying vision disturbance in right eye which resembles the zig zag effect of a migraine attack, so vision severely limited at times. Haven't adjusted even after four years, still constantly walk into doors and cupboards and going out is a nightmare as I constantly bump into other people and can’t deal with pushchairs etc at all. I’m no longer allowed to drive so have to rely on public transport, this is a pain in itself and can be very stressful. To get to my hospital appointments I have to reply on friends for lifts as it would take me four different buses and about 3 hours travelling just to get to the hospital, when it only takes 40 minutes by car door to door. I also have cataracts in both eyes due to long term steroid use

    2. Fatigue. Like everyone else I have to pace myself carefully and plan things well in advance so I can make sure I always have at least a day’s rest at home before having to go out again. If I’m at home in the afternoon which is more often than not, I have a sleep in the afternoon otherwise I wouldn’t get through the evening.

    3. Severe back pain. Not an ache but really sharp pains which I’ve had for nearly 5 months now, totally debilitating and pain killers don’t seem to relieve it at all. Consultant has recommended an MRI scan in case I have a fractured spine due to long term use of steroids

    4. Disturbed sleep. I sleep really badly, even with sleeping tablets and this isn’t due to sleeping in the afternoon, Some nights I wake up every hour as if it’s time to get up and this gets the day off to a really bad start when morning eventually arrives, as I feel exhausted for the rest of the day

    5. Although I was close to retirement age when MPA was diagnosed, I hadn't previously had any plans to retire from work as I loved my job and the people with whom I worked, but the illness put paid to that and my life changed completely.

    Other irritations include headaches; sinus problems; various aches and pains in joints; digestive problems and a perforated septum which causes me much discomfort on the bridge of my nose where my glasses rest!

    Hope this helps

  • Hi, my son - aged 14, diagnosed WG in July this year:

    1. Chronic Kidney failure - on dialysis 3 times a week, until he is able to have a transplant, but not for at least a year post-diagnosis.

    2. Tiredness

    3. Swollen face due to steroids

    4. Bleeding from lungs - although this has cleared due to prompt action with plasmaraphesis

    treatment.

    I would add to these that mentally, it has been extremely tough on a previously very fit, sporty boy who now has to spend almost as much time at hospital as in school.

  • Julesfarm We are so sorry to hear about your son, is there any way we can help or give you any support. If so please contact us jandsmills@btinternet.com or phone 01629650549...or send a private message... Also if it is not too much trouble we would like to know where your son is being treated please....

    take care

    Susan and John

  • Hi - 47 years old diagnosed Urticarial vasculitis 2009 but actually had since 2006

    My Top 5

    1. Fatigue like everyone else, I start work at 7am because I dont sleep too well but by 2pm Im exhausted and I dont finish work til 3pm! Mostly in bed between 6pm and 7pm

    2. Reactions to infections, have chest infection at the moment, difficulties when my GP away and trying to get locum doctors to immediately start me on antibiotics and steroids otherwise I go downhill FAST is a nightmare, then taking soooooo long to recover from things that other people need a couple of days for meds to kick in.

    3. Muscle and joint pain, terrible in my arms, not many pain meds other than paracetamol I can take due to the urticaria and cant have Amitryptiline due to also having adrenaline spray for angioedema, can cause heart issues. Trying to get Rheumatology and other medical teams to take symptoms seriously, if it isnt in the blood tests, it doesnt exist!!!

    4. Effect on my family, I have husband and children, albeit kids teenagers now but our life has changed so much from what it was, due to pressure urticaria too I cant be on my feet too long so walks and things we used to do we cant do together. My kids are great we have discussions about their day etc in and on my bed most of the time cos when Im not at work thats where I usually am!

    5. Weight gain - large amounts of different meds mean I find it near impossible to lose weight, which then impacts on other things such as back pain, knees etc.

    Hope these help, good luck with your course

    Karen

  • Hi - 47 years old diagnosed Urticarial vasculitis 2009 but actually had since 2006

    My Top 5

    1. Fatigue like everyone else, I start work at 7am because I dont sleep too well but by 2pm Im exhausted and I dont finish work til 3pm! Mostly in bed between 6pm and 7pm

    2. Reactions to infections, have chest infection at the moment, difficulties when my GP away and trying to get locum doctors to immediately start me on antibiotics and steroids otherwise I go downhill FAST is a nightmare, then taking soooooo long to recover from things that other people need a couple of days for meds to kick in.

    3. Muscle and joint pain, terrible in my arms, not many pain meds other than paracetamol I can take due to the urticaria and cant have Amitryptiline due to also having adrenaline spray for angioedema, can cause heart issues. Trying to get Rheumatology and other medical teams to take symptoms seriously, if it isnt in the blood tests, it doesnt exist!!!

    4. Effect on my family, I have husband and children, albeit kids teenagers now but our life has changed so much from what it was, due to pressure urticaria too I cant be on my feet too long so walks and things we used to do we cant do together. My kids are great we have discussions about their day etc in and on my bed most of the time cos when Im not at work thats where I usually am!

    5. Weight gain - large amounts of different meds mean I find it near impossible to lose weight, which then impacts on other things such as back pain, knees etc.

    Hope these help, good luck with your course

    Karen

  • Have you presented all the evidence yet Berkshirebird?

    all the best

    Susan and John

  • Hi All,

    Sorry for not posting this sooner but as you can imagine, I was a bit whacked after the very full on day I had on Tuesday. I've also been quite busy, as I don't know if you've heard, but Christmas is nearly upon us! ;-)

    The day consisted of lectures about, mainly, Giant Cell Arteritis but touched on other vasculides. After this the Vasculitis patients sat in groups to discuss, with various medical professionals, how Vasculitis has affected us. It was, for me at least, quite emotional to openly lay out my journey on the Vasculitic road. My audience, sat quietly and listened and then I was bombarded with questions!

    I gave in your comments (as above) in document form (I just cut & pasted your comments into a word document), to the course organiser, Dr Jo Robson, who was very interested in them and very keen to look them over. She said she will contact me to discuss any further developments regarding them. Fingers crossed!

    So, all in all, a productive day for all concerned.

    Thank you all SO much for your thoughts and I am positive your comments will be put to good use by Dr. Robson.

  • Exhaustion, Lack of mobility, hearing loss, sight problems, loss of independence.

    I have GPA & was diagnosed last January.

  • Fatigue ,stiffness pains in feet and calfs,blurred and double vision,weight gain with pred currently on 25mg daily.Ive large vessel vasc GCA ,PMR, im a type 1 diabetic have addisons disease also.Seeing haematologist poss huhges syndrome aps ,borderline rheumatologist says on blood tests,poss warfarin.I walk for 20 mins and tired for rest of day.Poss ill health retirement talked about with hr and occ health,im a manual worker company dos says im not fit for current role,so poss redeployment int office work no guarentees though.So vasculitis and my other autoimmune probs have had and may have a dramatic effect on my life ,in both the quality mobility cant drive as had double vis in the last week,and ability to provide for my family.Health most important I know but so are all the things we take for granted when we are are healthy.Im a 50 year old man ,who feels like a 80 yr old.

  • I have Takayasu's (aortitis), subclavian (arms and legs), iliac (groin) giant cell, and was diagnosed 2 years ago.

    My Top Five are! 1.Fatigue, 2. Infections, 3. sleepless nights/unpredictable days,

    4. Medication, 5. Pain. ( and... if I could have a number 6... my whole life has changed.)

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