I have just been diagnosed with Vasculitis WG and feeling very confused and would appreciate any advice from anyone who can help?

Hi i am Richard aged 39 living in Worthing. After a positive C-ANCA and PR3 blood test i was referred to Sussex Kidney Unit, my symptoms over recent months have been in decline. I suffer from pain and dull aches in my right kidney, constantly fatigued , sinus problems & alot of joint pain especially in shoulders, elbows, wrists and fingers.

My consultant has informed me it is type WG and i am now taking 60mg Prednisolone, 200mg Azathioprine, 4ml Nystatin and 40mg Omeprazole. I also take CoCodamol for pain relief. My consultant has also referred me to a reumotologist and planned chest x-rays.

I am feeling quite worried about what the future holds and confused as to what will happen, my Dr says it will be 18 months on medications and to expect side effects, it certainly feels frightening reducing the immune system as to how to fight infections etc. I am currently unable to work and feel my employers are not understanding the diagnosis or effect on my health. I would be very grateful for any advice or help anyone might be kind enough to give me relating to what is happening to me and where im heading!

Best Wishes

Richard

13 Replies

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  • Hi Richard I was diagnosed WG in January so everything is still new to me too. I am still having sinus problems and got too the stage where I could hardly walk as my feet and hands were swollen. Work tried to be understanding to my symptoms and this week I started my first cyclophosamide treatment to help protect my kidneys. I csnnot give you any advise as I am still learning about this condition too. All I can say with regards to your employer is too let them know it is a serious condition just because we might look well on the outside our insides are a different matter! I hope someone else can you give you the help and advise you need. Best wishes Anita

  • Hi Richard and welcome to the site, though I appreciate you would rather not be joining us!

    It is terrifying to be told you have a disease you have never heard of, that makes you feel so ill and appears to have ruined your life. On top of that, the medics give you toxic drugs that make you feel even more ill. The therapy is often harder to take than the illness, at least in the early stages when doses are high. We have all been there and it is so hard to cope with, at least at first. I promise you, it does get better.

    I do not have your type of vasculitis, I have MPA, but it is very similar. I will leave the detailed information to someone who has WG. I am sure it will come, and soon! However, would like to say that I would have expected you to be taking prednisolone (steroids) along with cyclophosphamide at this early stage. Both in quite high doses. Azathioprine is what is usually used as a maintenance drug, once the illness has been knocked into remission by the combination of cyclo and pred. Usually takes 3-6 months, though during this, the pred will be reduced fairly quickly and, after this time, azathioprine usually replaces the cyclo. Maybe you need to be asking some questions of your specialist? If you are feeling worse, then that needs reporting, and quickly!

    Infections - yes, your immune system isn't working too well on these drugs and you need to avoid all infections, if you can. I was told not to have contact with anyone with a cold or viral infection and to be scrupulous about hand washing and disinfecting light switches, handles, etc. Otherwise you get 3 month chest infections instead of a few days of a cold, etc.

    You might like to check out the info on WG on the Vasculitis UK website. Lots there to shed light on WG, drug therapies, work situations, etc.

    Ayla

  • Before my WG was brought under control I experienced many of the symptoms you are having now. I had a frozen right shoulder which was very painful and aches and pains everywhere. I also had the sweats. My hair could be dripping with sweat it could happen anytime either day or night.

    It can take some time to get the condition under control. I was on chemo for 9 months. Most of us stay on a number of drugs for some time after the condition is brought under control.

    However in most cases once you begin to stabilize the consultants will start to reduce your steroids, Prednisolone. My condition (WG) was dx in March 2011 and I am still on 5 mg of steroids down from 60gm.

    I have no experience of the side effects of Azathioprine, however I avoid people I know are ill. I am also on the risk register for my GP and get the flu jabs each year. You can ask about that for next winter.

    Steroids can produce a number of side effects. The thing about side effect is you might have all or none or somewhere in between. I do not know if you have looked but Vasculitis UK’s web site offers a good summary of the effects of some of the drugs. However on 60 gm you might feel a little like the Duracell bunny sometimes and I had trouble sleeping some nights.

    vasculitis.org.uk/about-vas...

    For me it has got better over time and I can walk further and I am back swimming and doing yoga. Hopefully you too will improve over time.

    As you getting you work to understand. Vasculitis UK has pamphlets on Living with Vasculitis perhaps it would be a good send him a copy. You could ask John Mills to send you out some for work and family. John details are on the Vasculitis UK's contact page.

    Good Luck it is a bit frightening but there are plenty of people here to answer question so ask them as they come up.

  • Hi Richard,

    Yes it's all very bewildering. I presume the azathioprine is just a holding operation. As Ayla said above, it is not a very potent drug so I hope you are going to get some more active treatment very soon. If the kidneys are involved there is some urgency.

    We do have an "Understanding Vasculitis" leaflet which is intended for helping family friends and employers to understand the condition. If you want to send me a message here, or an email john.mills@vasculitis.org.uk or phone 01629-650549 you can give me your postal address so we can send you some stuff.

    Whilst this is a serious disease, if it's properly and promptly treated you should be able to regain a good standard of health and have a normal life expectancy.

    Take care - John

  • Hi Richard

    So sorry to read you have Vasculitis sweetheart. I was diagnosed with WG (P-ANCA) and kidney involvement in March 2011. It is very scary and really confusing to find out you have a disease nobody has heard of !!

    Also suffer with fatigue, joint pain in left elbow and fingers and had exactly the same symptoms, along with others, as Anita before diagnosis.

    As Ayla has mentioned, Cyclophosphamide is usally the drug of choice to get the disease under some sort of control and Azathioprine is a maintenance drug once the disease is in remission. It wouldn't be amiss if you mention this to your consultant perhaps.

    I am back at work and am also having problems with my employers getting a proper understanding of how WG and chronic kidney disease affects me quite badly because I don't look ill.

    Fatigue is sometimes a real burden which, again, they don't truly understand the difference between feeling tired and having flat batteries (fatigue) as John once put it. Once you get a copy of Understanding Vasculitis leaflet from John, and I am sure there is one for WG/GPA also, you should give a copy of them to your employers to read. Maybe your consultant could write a letter for them also?

    I am pleased to say that, thanks to prompt and correct treatment, I am now having a normal life as much as possible :-)

    For your information Richard, VUK also have a Facebook page which is also another very good support system.

    Take care and best wishes

    Jacqui

  • Hi Richard, the first thing is 'don't panic'. I have had WG with lung and kidney involvement for 10 years. I had no support at first and when I looked the illness up on line, I scared myself silly.

    Well I'm still here so I suppose I've proved that you can live with it!

    I don't seem to get too many infections but when I do they can take a while to shift. Otherwise I live life much the same as before. Albeit at a slightly slower pace.

    I think the drugs help but also when you live with something all the time, it becomes normal. I find the hardest thing to cope with is the fatigue but you will learn to pace yourself.

    You are very lucky to have found this site so soon. It is a wonderful means of support, when you have questions or even if you feel like a moan. You never have to feel as if you are on your own with it!

    You can live a good life, just be sensible and rest when you need it. I have survived with a sense of humour and a determination that this will not beat me!

    Good luck for the future, let us know how you get on x

  • Hi Richard. I went through the experiences you are having now in 1997. I was diagnosed with W.G. But the good news is that for the last ten years I have been able to play a round of golf on a regular basis. So there is a light at the end of that very long tunnel. Best wishes.

  • Hi Richard,

    Just a quick one. I was diagnosed with MPA (so similar symptom-wise to WG/GPA) in November and am too unable to work yet, this is so hard so I completely understand. I am in Worthing a large part of each week. If you want to meet for a coffee, chat, support, compare the 'steroid' moonface (!!!) please contact me. I started in November after IV steroids in hospital with 75mg of pred and am now down to 20mg plus 250mg Azathioprine, amongst others. Please contact me if you want, would be good to speak to someone who knows how frustrating this is. Take Care

  • Hi

    Thank you so much for taking the time to reply, i hope you are feeling ok and had a nice weekend. Would very much like to meet up and compare notes. Are you having your treatment in Worthing? I am certainly concerned about whether or not i am receiving correct medication. Take Care

  • Hiya,

    Weekend was fine thanks although I think I may have picked up a little something as I have sore throat and feeling more tired than normal but ignoring it!!! No I'm not having treatment in Worthing, I'm at St George's in Tooting (as I was living in Surbiton, Surrey when diagnosed) but my Mum lives in High Salvington and I am down here quite a bit. Not being up to working means the days just drag on and I have lost my purpose really....I am normally such a busy person. Do you have any renal involvement? We can chat about this. How do we do this then? I don't want to leave my phone number on this site....I think I can message you, or you message me, privately. One of the people on here told me how to do this but I am such a technophobe........can you work it out???? We could meet at Sea Place cafe? Depends where you are and if you are driving at the moment? I drive so anywhere is good for me, it will be really good to meet someone who has Vasculitis, it has to be the most misunderstood disease ever! Look forward to hearing from you. Vanessa

  • Hi everyone,

    I wanted to thank you all so much for your support and wishes and advice, i have found it overwhelming how supportive you all are and you have really helped me feel that i/we are not alone and all is ok!

    I am struggling with the joint pains and fatigue the most and finding simple daily tasks emotionally and physically very hard, i get upset just looking at all these medications.

    It sounds very much that i need to question my medication which i am going to do but i am beginning to feel that maybe the local hospitals are not going to be specialist enough for treatment? All a little confusing but one day at a time i guess.

    I didnt realise how comforting it would feel to hear from people sharing similar symtoms and going through the same treatments. I can really relate to the insomnia and Duracell bunny in the mornings but then a sudden collapse for the rest of the day!

    Please excuse me for not working out how to reply correctly yet but i wanted to thank you all and return my best wishes to you all too. I hope i can be of support and help to you all over time too.

    Will keep you updated, have a nice weekend x

  • Hi Richard

    That's what we are all here for, to support each other through this sometimes scary journey. It is easy to feel alone when first diagosed but as you can see, you certainly are not :-)

    Not sure where you live Richard so don't know what hospitals are near to you but there are some who do specialise in Vasculitis. There are a couple that I know of in London, one in Cambridge and another in Birmingham. If you message John Mills, he will give you a list as there are more.

    Take care and have a good weekend also :-)

    Jacqui

  • Sorry Richard, have just re-read your first post. Would you be able to travel to London? Ask your GP to refer you to a Vasculitis specialist if you can :-)

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