Just been diagnosed with WG

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Hi,

I was diagnosed with WG 3 days ago. After months of very painful joints, I finally got an appointment with a rhematologist who carried out loads of tests and has now told me I have WG, and my treatment will be taken over by the vasculitus team.

Suddenly so many symtoms I have been brushing off as nothing look like they play a part in this illness; constant tiredness, blocked ears, soar throats, runny/blocked nose, feeling like I constantly have a cold about to start.

The rhematologist painted a very positive picture. Saying there were lots of goods treatments now that could put me in to remission. That the hospital had a very good vasculitis team and I would be getting the best care. I like to think I'm a strong person and left thinking I can do whatever it takes to get well again.

Since then my rhematologist has said he is recommending a kidney biopsy because of the results of one of my tests. Maybe rather foolishly, I've been trying to find out more on the internet, but I am struggling to find anything positive about this disease. In fact quite the opposite, and the positive strong attitude I thought I had on Thursday is starting to get eroded.

I've stumbled accross this site now and read some of your comments. So I've decided to get some of what's going on in my head out and down in writing as well. I'm not sure what I'm trying to achieve. Maybe it makes me think \"well at least I'm doing something\". Maybe I'm hoping someone will respond and tell me that I can still look at it positively. I guess I have to.

I live alone and work full time doing what is usually a very stressful job. I haven't told anyone about this yet. I'm scared about the future and worried about wheather or not I have what is needed to get me through this. I'm hoping this is just me feeling sorry for myself, and I'll be able to give myself the kick up the backside I need to fight it and keep my life normal.

I apologise for my ramblings, but any comments, words of wisdom or even that kick up the backside would be gratefully received.

My best wishes to you all, Rebekha

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  • Posted

    Hi Rebekha

    I've just read your posting and so sorry to learn that you have contracted WG. Don't worry, there are many of us on this site who have gone through the same trauma as you, but there are very effective treatments available.

    The main thing is to think positively once the treatment has started and you will soon feel much better. No doubt you will get many other responses to your posting and I'm sure the other correspondents will agree with what I have said.

    The treatment is long term, so be prepared for this and above all, keep your chin up.

    Yours sincerely - Mo Grant

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  • Posted

    Hi Rebekah

    Sorry to hear of your diagnosis but like Mo has said there is now alot of effective treatments that are good at getting things into remisison and helping to feel better its a lifetime disease and medications will go up and down. The internet reading on WG scared the life out of me to the put i was totally depresed for a month so stay clear it does however help to read real peopels experiences on the site and we have all felt like you do. Hopefully, the kidneys are affected too much. The key is knowing you have it and getting it treated pleae keep in touch as we all try to support one another.

    Regards,

    Tracey

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  • Posted

    Thank you both for your comforting words. Reading the experiences on this site is definately helping me get some perspective on all this.

    It still doesn't seem real though. I feel like I'm talking about some TV programme I've been watching. I'm very detatched from it at the moment. I work as a project manager, and my brain is still treating it as a project I have to manage rather than something that is actually happening to me. The thing is, I think my current emotional detatchment is the one thing that is stopping me from freaking out. So I think I'll go with this for a little longer.

    I was given a steroid injection about 3 weeks ago, and it's been brilliant. I felt almost like my old self again and have been on a mission to fit in as much as possible before it wears off. I had actually started to think that it was all nothing, and that the injection was just the kick start my body needed to be alright again. Sadly it's starting to wear off and I'm back to doing the carpet shoe shuffle again. Still it was nice while it lasted.

    My rhematologist has said he doesn't want to give me anything else just now and has asked me to stick with just paracetemol. I realise he's trying to get me clean - so to speak - so that the docs can see exactly what they're dealing with and how any new meds may be affecting me.

    I'm going to stick with this site I think and continue my ramblings. Who knows, maybe I'll eventually post something that is useful to other users and be able to offer support as well.

    Best wishes to all, Rebekha

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  • Posted

    Hi Rebekha

    I've just read your latest posting. The sooner the vasculitis team take over your treament, the better as this disease needs immediate and aggressive treatment as soon as it is confirmed by diagnosis. The steroids are wonderful and do bring relief, but they need to be supplemented by other treatments.

    We all wish you good luck in your battle against wg and do keep us informed of your progress.

    Yours very sincerely - Mo

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  • Posted

    Hi Rebekah

    Yes I think the docs will allow the injection to wear off to see just how your joints etc are affected. I too had joint pains however i was crucified with severe sinusitis and all its symptoms ie: headaches, gross nasal crusting and discharge etc. The more you read onthe site the more you will see how different people are affected in different parts of the body but regardless we all eventually get the same treatment. Once starting 60mgs Prednislone I felt great relief however due to the side effects of this it needs reduced and replaced with a steroid sparring agent ie: Methotrexate, Cellcept etc both myself and Mo are the only 2 I know on this site that take the Cellcept as Azathioprine and Methotrexate as well as Cyclophosamide (if kidneys are involvned) is the preferred treatment approach for WG however the Azathioprine and Methotrexate caused me some liver problems therefore I was switched to Cellcept (also known as Mycophenolate Mofteil.

    I hope you start treatment soon in order to help you feel better. Im diagnosed 6 months this week and can say it is only now Im coming to terms with and starting to accept the emotional aspect of it, this has been helped by being in contact iwth others like Mo etc he is always very comforting. I have 2 young children so was greatly concerned for them but iIhave managed to keep the illness from them thanks to the meds. I also continued to work throughout in order to keep life as normal as possible I work as a Medical secretary in the Hospital.

    Take care, be strong and keep your chin up. I find if you find out about the disease and the signs to look out for and also how to monitor things you feel more knowledgeable and therefore more in control of your own circumstances. There is little known every by the Medics about it as it is so rare although certainly seems to be increasing.

    May i ask your age and where you come from?

    Regards,

    Tracey

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  • Posted

    Hi , just to give you a bit of a cheer up. I was diagnosed in jan 2009 and had plasma exchange, kidney biopsy, chemo and heavy steroids. took a year of recovery, got over a breakdown. marriage broke up, lost my house. I bought a road bike in april and i now cycle between 40 and 60 miles a week and ride my bike hard and try to swim 150 lengths a week . I have 2 boys, a nightshift job. my life is great and i never look back now.i take the drugs and get on with it. Hope this helps and much love. Debbie xxxxxxxxxxxxxxxxxxxxxxxx
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  • Posted

    Hi everyone,

    Thank you for you comments and support. I think you're all amazing and exude great strength and courage. So I've decided to do the same. No more feeling sorry for myself. There's more of me in this body than the disease so I just have to remain the dominant one.

    I've had a good week. Despite the diagnosis. I've had family visiting, and I've had a week on holiday (which is alwaya nice). I'm starting to notice when I've over done it and need to rest or take some pain killers, and so far, me and WG are co-habiting quite well.

    I'm seeing my rhematologist on Tuesday and I'll be chasing the vasculitis team today, because I think they were due to contact me this week, so I thought I would just remind them about me.

    Tracey, I'm 39 and live in Cambridgeshire, so my treatment will be happening at ************ in Cambridge. My rhematologist has said the vasculitis team is very good and I'm probably in one of the best areas for treatment. I'll keep everyone informed of what we do, and I'll let them know I'm on this site. I hope to be able to offer practical and emotional support like I am receiving.

    Take care everyone, and speak soon. Rebekha

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    (Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum. If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/color:883e2937c5][size=9:883e2937c5][/size:883e2937c5]

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  • Posted

    Dear Rebekha

    I read you latest posting this morning and I wish you well with your prospective treatment and hope that this is successful. You have certainly developed the right attitude for dealing with wg and please keep all of us informed of your progress. I attend ** ******* in Carshalton about every 6 weeks for bloods and a general check up, which I have been doing so since I was discharged in late June last year. Its only about 40 minutes by car from where I live (Godstone - Surrey), so its no too bad for me. Its a long haul as I have said before so please be prepared for that.

    Sincerely - Mo

    [color=red:ea56012df4](Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum. If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/color:ea56012df4]

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  • Posted

    Hi Rebekah

    Glad to hear your tackling this with a positive attitude I learnt the hard way that it definitely helps to remain positive. Family support wjch thankfully i had plenty of is a a good help. Ive heard of that Hospital probably through my extensive Wegeners research and it has a good reputation.

    So your in your 30's like myself Ive just turned 34. I had my monthly check up this morning, here in Belfast I attend the immunology clinic as it is an immunology dsiorder as well as a vasculitis disease. My bloods from the previous month were all good indicating the disease is under control and thats the aim of the game! so Im to continue my meds as before and back in another month, the appts are less frightening now as things appear to be going in the right direction. Once you get on treatment you will feel much better and its good to see how the meds zap this disease.

    iI see Debbie Ley has responded to your posting, she contacted me when i was only diagnosed and she was an inspiration to me (doubt she knows this)and helped me to stay positive when I compared my level of disease to what she had been through I realised I had escaped lightly, that girl has come through so much anf still remains strong and positive she is a pleasure to know.

    Well stick with the posiive attitude, chase up them Docs and get on the meds thats the important part and you will hang in there with threst of us we all have good and bad days!!

    Regards,

    Tracey

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  • Posted

    Thanks guys, I have been through a bit and Lucas was only 9 weeks old when I was desperately ill so my body was under pressure after birth too. I am fitter and happier than i have ever been. and WG has made me more mentally tough. I was given help from Mo Macbain and She made me turn a corner with it all. I like to support all who are just diagnosed as I was at that hell time too. Everyone does it goes on the internet and scares themselves silly. Love to all and chin up!!!!!!!!!!!!!!!xxxxx
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  • Posted

    Hi Debbie,

    I just wanted to add my admiration to Tracey's. I was gobsmacked when I read what you had been through and it certainly helped me get my situation in to perspective.

    I used to go to Salsa and Ceroc dancing, and I had started to think that those days would be behind me, but after reading your post, I now have a new goal to aim for, and that's to go back to my dancing again - eventually. I'll put a timescale on it once I know what I'm dealing with.

    So thank you for helping to give me something to look forward to again.

    Best wishes to you all.

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  • Posted

    Hi Rebekah

    just wondered if you had managed to pin anyone down and get started on treatment as yet?

    Tracey

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  • Posted

    Hi Tracey,

    I was at the hospital on Tuesday and saw someone from the vasculitus team. They want to do my kidney biopsy first to find out how advance the condition is and then decide on my treatment. I should being going in for that probably next week or the week after. Then I've got another appointment with them and the ENT guy aswell this time on the 15th of October to discus the biopsy and my treatment.

    I was a bit shell shocked if I'm honest. There were so many people about and I found the whole experience quite unpleasant and mentally draining. Which surprised me because I've been there many times before. Anyway I'm sure it's only because it was my first time with this and I'll be fine in future.

    So far I'm still doing well with whatever is left over on the steroid injection, but I've had problems with my throat this week. It felt like I have somethnig stuck in my throat, and I started off sounding like a dalek and progressed on to Marge Simpson. It's difficult to tell at the moment if a symptom is part of my condition or not. Also am I actively looking for things and making a big deal out of something that I would have just ignored in the past.

    Here I am rambling again. Sorry! Thank you for asking. I'll let you know what happens next and what the treatment is when they finally give me some.

    Take care and best wishes, Rebekha

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  • Posted

    Hi Rebekah

    to be honest I can safely say I know exactly how you feel it is like dejavu to me infact asI write I can feel tears in my eyes and an anxious knot in my chest. the waiting is horrible and we are enclined to think we have the worst case but wen you look at what Debbie and a few others came through at leasy you and I were still standing and able to be treated at outpatients. I hope the kidneys are only mildly involved. My main problems were ENT, which yes also involved my throat so that could be what yours is or given its now Autumn it could bea viral thing.

    Onceyou know exactly what stage your disease is at and get ontreatment you will feel better and think positive as usually the diseae goes into remission fairly quick and at each appt at least for me things with regards to bloods etc improve quickly which is reasurring.

    I wish you well and if you ever want or need to talk let me know and I can make my number available when I started treatment I gt Debbie Leys number and she really helped me she knew so many people or had done sowell so Im sure she would even speak to you.

    Best wishes and please do keep in touch.

    Tracey x

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  • Posted

    Hi Rebekha

    Just read your latest posting and Tracey's response. Don't worry about the treatment you are going to have - its not too bad and I can assure you that you will feel much better in a few days after the regime is started.

    When I was first admitted to hospital, they took so long to confirm the diagnosis of WG, that I almost expired, I would not have lasted more than a few days at that hospital. When I was transferred as an emergency, blue's and two's and all that, to the new hospital and given immediate and correct treatment, I felt a little better by the next day. I was given a large dose immediately of intra-venous corticosteroids and the next day, 60mg orally of prednisolone. Then followed my first dose of cylcophospphamide (given intra-venously) and three sessions of plasma exchange (by dialysis) followed by a blood transfusion. I also had a kidney biopsy (don't worry about that - it was nothing!).

    When I was discharged at the end of June last year, I was told to attend the outpatient's clinic. I did this for about 2 weekly intervals for the first 6 months which gradually opended out to about 6-8 weeks, which I am now on. Altogether, I had 6 sessions of cyclophosphamide at two weekly intervals.

    Am now on 5mg Prednisolsone and 2grammes of Cellcept per day together with other minor drugs.

    I tell you all this because I was a very severe case of Wegener's and I now feel very fit and am doing all the things I used to do before I was struck down with the disease. But I do tire easily when I take on too much! My age has something to do with that (I'm 84 - the same age as the Queen!)

    So keep your chin up Rebekha - you can look forward to a long and happy life, once the wg has been brought under control. I'm sure Tracey and all the other correspondents will agree with what I have written.

    Kindest regards - Mo x

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