John_MillsAdministrator

If you email John at jandsmills@btinternet.com He will send you some information to help you, your family and friends to understand. Or you can phone us on the number on the website.. vasculitis-uk.org.uk I am sure there will also be numerous people in this group who will be very helpful. WG is difficult to understand and can be scary but talking to other people with WG will help. There is also a face book group called vasculitis-uk (Stuart Strange Vasculitis Trust) there are lots of very nice people to talk to in that group too.

DevonLottie

Hi Louise, do contact John and Susan, they have loads of really useful information about WG and vasculitis in general.

I've had WG for the last 10 years and can tell you that, once it is in remission, you'll feel miles better - maybe not quite as before but much more like your old self! Rituximab is a fairly new drug used in the treatment of the disease which is proving effective. I've had one course of it which caused me no noticeable side effects. My main tip for you would be not to push yourself too hard - listen to your body and rest when it tells you to, it will speed up your recovery in the long run. I do hope you're feeling better soon. Charlotte

patsy

Hi Louise its a bit like being hit by a train being diagnosed, what is it who can I talk to and if I dont understand whats happening to me how will anyone else? These are all questions that go through your head, however you have asked the question here and you will get answers trust me, I cannot tell you how alone I felt but John and Susan have been invaluable . I no longer feel alone and there are people around to help and advise.

Patsy

PatriciaAnn

Hi Louise. Where have you got the WG? I was diagnosed about 8 years ago. Mine is in my trachea and nose. My treatment was infusions of cyclophosphamide and high dose Prednisolone. It took a couple of years before I started to feel something like normal. However, other people have felt really fine after only a few months. The thing with WG is that we are all different. We react differently to the drugs and it can depend on the damage done before diagnosis.

I've never had Rituximab so I can't comment on that. I am presently on a maintenance dose of Azathioprine and 5mg Pred.

As Lottie said, you must listen to your body. OK, you don't know how to do that just yet, but you will learn. If you are on high dose Pred then you may suddenly have the energy to do all sorts of things. Unfortunately it doesn't last. So pace yourself. On the days that you can do something then do it, but don't over-do it. On the days when you can't then leave it. The dust will still be there tomorrow and if anyone doesn't like it then tell them where the duster is !!!

You may also feels so very tired and fatigued. When this happens go to bed. A kip in the afternoon for an hour will do wonders.

Another good tip - try to keep a positive attitude. Sometimes that is difficult, but try.

Lots of love from Patricia

Essex-jill

Hi Louise.

I was diagnosed approx 12 years ago with WG and I can still remember how confused and alone I felt, despite being a nurse for over 20 years. I joined a local support group which I found invaluable to be able to speak to other members who had similar signs and symptoms as me. They gave me lots of useful advice. We are now very lucky to have this website which I think is fantastic, so supportive and informative.

I have been having Rituximab every 6 months for the last 4 years and I call it my "wonder drug " Like other members have said you will get to know your own body and listen to it. When you see your Consultant write down all the questions you want to ask and take "ownership " of your illness. I agree very strongly with Patricia try to stay positive and remember you are not alone we are all here to help and support you.

Wishing you a happy new year.

Jill

Llinos

Hi Louise

I was diagnosed 11 yrs ago with WG, like Jill above I am a nurse and felt so alone with having a disease ( I hate that word) that no one knew about.. I lost my hearing and developed the classic pug nose.

Although I live in Wales, my sister lives in Nottingham and I travelled up to the support group , I found their advise and support kept me going during the rough periods.

As the others have advised , listen to your body, rest when you feel tired, dont push yourself too hard.

Ive had one relapse due to the stress of my husbands death but now Im well, fit ( ish) and live life to the full as much as I can. Ive got lovely hearing aids and have had surgery to my nose, so I look "normal" again. All these things have taken time so go easy on your self and look after your self.

Use the support of others .

Llinos x

Dave_Buzzey_B

Hi Louise

I was only just diagnosed (although I had the symptoms for two years) with WG and was on high doses of prednisolone (I'm only on 20mgs daily now) and other immuno - suppressants as well as Fexofenadine and Certrizine (Anti-Histamines), We all different symptoms but in the main a itchy rash, flu like symptoms without the sneezing and the worst of all is the tiredness you feel and sometimes the medication the doctor put you on can also make you drowsy. So it important to rest when you feel weak ( the jobs will still await you later on or the following day), I usually find an hour in the afternoon usually sorts me out. Most of all though talk to your friends and family about it. Vasculitus isn't that well known, affecting about 1 in every 2 to every 3,000 so your friends and family are sure what they can do to help. Educating people about vasculitus helps them to understand how your feeling, so they can help where possible and understand your needs. The good news is most people go into remission and get to feeling like their old selves. Like Jill and Llinos I was also a nurse for ten years and I had never heard of it, but do talk to people on here about it, John and Susan have worked wonders with this site and and are always there with the latest news and leaflets to keep or give out to friends, I really applaud John and Susan for their never ending commitment to this site and all the fantastic help they have given to others ( their the original unsung heroes of this site), all the people on this site are wonderful and there to help if only for chat or a whinge.

Wishing you well,

Dave Buzzey B

Heal-

Hi Louise

Hoipe you are well and smiling.

My mum was diagnosed with WG in 2008 after undergoing lung biopsy. To be honest, at the beginning she was not well at well. Her symptoms were, weight loss, coughing up blood and general body aches. But after being on a plan where she took a high dose of steriods, which is different to what you are on, over the years she has got better.

One thing you have to remember is, everyones condition is different, What one person with WG may expereince the other may not.

So when you read articles or stories, or even professional advise, take it on board but dont always think, this will happen to you. I worried myself sick, thiikng what would happen to mum next. But fingers crossed shes doing well.

Just keep in touch with your specialists, let them know of any changes, side effects, dont be afraid to contact them, even if it means u do this nearly every other day. They are there to help you. Try not to go to your GP, becuase not all GP's know about this condtion. Some have never heard of it.

I have always gone to the specialist on behalf of my mum becuase my GP once gave me wrong advise and i altered mums medication and she got very ill.

Also follow the healthy diet plan, this doesnt mean, you have to go on a 'diet', but eat food high in fibre, potassium and calcuim and keep active.

One thing my mum did when she first got diagnosed was Yoga. This worked very well for her.. She felt more relaxed, calm and postive, I really believe that having positve thoguhts can get u a long way. Please do try it, if u can go to yoga classes.

Even though i am not experinecing this myself, i know quite a bit about t becuase i take care of mum as she does not speak engluish and i do the research and commuincate between ehr and the specialist.

It can be hard to come to terms with it but keeping postive, and doing your best to keep helathy will take u the right way

If you ever want to talk about it, please dnt hesitate to email me on jess_patel985@hotmail.com.

Speak to you soon xxx

Louisexx

Thank you for all your coments,I would of written back sooner but ended up back in hospital again,I'm suffering with my face it has gone numb on one side and allways in pain and my nose has a lot of discharge,also deaf in one ear, I'm on so many pills I've now got the shakes I'm on 40 mg of prednisolone and 200mg of azathioprine does this sound right thanks again xx

Dramaticharlie

Hi Louise,

Sorry to hear you had to go back into hospital, but that sounds about right to me, when i first got diagnosed i was on higher doses than that so don't worry.

If you ever wanted to chat that would be great as i don't know many other young WG sufferers and i know sometimes it is nice to talk to people closer to your age group

I'm just about to turn 19 and was diagnosed when i was 17. I used to feel the same, that i would never feel normal again, but i can reassure you i feel a lot more like myself again now

chacharlie@live.co.uk - my email if you ever feel like u need it

Charlie x