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Thread: My mother has WG

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    Default My mother has WG

    Dear all,

    Not sure where to begin, as I have only just found out that my mother has WG. My mum is 48 years old, white woman, from what I've been reading she seems to be typical for WG. For the last 2 weeks, my mum has had a really awful cough, fever,fatigue, joint pain, urine change, lost of voice, conjuctivitus, tongue ulsers and a bad ear infection. She saw her GP and he gave her antibiotics, but instead of getting better, she just got worse. She also for the last 6 months had terrible sinus problems, she said that she had to wait until after her shower before she could blow her nose. She was blowing out terrible bloody clots. She also has has this cough for about 3 years that would never go away, no matter what she took for it. Her feet were also swollen. Her GP thought that she was having gout in her joints. Now I believe that it was the WG.

    My mum's partner forced her to go back to the GP after 2 weeks of being breathless and coughing. My mum never takes time off work, and fer her to have 2 weeks off was unheard of. The GP was utterly useless. He just wanted to give her more antibiotics. Luckily, my mum has private health insurance and they got the GP to write a referral letter to the private hospital. She saw a specialist that same day. At first, she said that he didn't take her that seriously, as her voice didn't seem horse enough. He put a camera up her nostral and explained that she had saddle nose and that she needed to go to the emergency ward with a letter from him.

    When they went to emergency, she was admitted in straightaway. Doctors were asking questions on whether my mum's nose had changed shape etc. However, her physicial appearance of her nose was normal. At this stage, the specialist said that he suspected a serious condition, but would not specify until the tests were done. She has chest xrays, MRI, blood, urine, CAT scans and many more tests. She was put on to oxygen permenantly and IV. They were only keeping her stable for a few days until they could reach a diagnosis.

    2 days ago, the diagnosis of WG was given and they started her on steroids. On Friday, she will be starting chemotherapy, they said for 3 months daily. They are also looking at the kidneys, to see how damaged they are. Yesterday was her first day on steriods and she seems a bit perkier. I just know that the chemo will probably bring her back down again.

    I would be interested to hear if anyone has had chemo when they have WG and how it was for you or your loved one? Do you stay in hospital for the duration or do you get to go home and continue treatment?

    I'm trying to remain positive for my mum and keep calm. I keeping my practical head on and making sure she has everything she needs for her stay. At home, away from everyone, I have secretly wept from fear of losing her and not knowing what to do with myself. I will update this as her treatment continues. Sorry if this seems jumbled, my mind is all over the place at the moment. I think you can read too much on the internet and scare yourself. The internet is a wonderful source of information, however, it can also give you too much info or misleading information.

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    Hi Lucy! Welcome to the site. You've come to the right place. I'll post more later as I'm rushed at the moment but the Steroids your Mum is getting should do a lot of good. Steroids for teh infammation and chmo to nail the overactive immune system are a magic combination for us all.

    It is all very scary at first but with time and knowledge you'll feel a bit better. We're all here to help!

    As far as the chemo is concerned, for me mine started in hospital and then I went to daily pills (cyclophosphamide) plus monthly IV treatments. This went on for a little over a year and since that point I've been on daily tablets (Imuran) which are less severe than the Cyclo but still do a good job.

    The best thing you can do for your mum is to be informed and stay on top of what the docs are doing. Don't ever be afraid to ask questions if you don't understand something.

    Sorry this is so rushed, I'll write more later.

    Andrew
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    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Thank you Andrew for your reply. I am popping up to the hospital to see Mum now. Seeing this website and reading people's stories has given me so much reassurance and understanding.

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    Hi again Lucy, I hope you find you mum feeling a lot better. Great to read that you got so much from people's stories

    No, as far as the Chemo is concerned, in many cases the patient will get hammered with it in hospital after diagnosis to get the imune system in check. Once the patient is stable, chemo can then be taken at home in the form of tablets and (perhaps) at hospital or a chemo clinic periodically (once a month in my case) via IV infusion. Once bloodwork starts looking more normal, the IV infusions are wound back and the patient continues on oral chemo until the doc thinks it's safe to remove that as well.

    Now remember that everyone is different. Some will have chemo for a few months and finish completely, others such as myself will be taking oral chemo until forever . Well, ok not that long but longer than some.

    I agree you can read alot of negative and scary stuff on the Internet that raises more questions than it answers. It's best to reada little of the medical stuff and then get the opinoins and advice of people that have been going through it, as you have done.

    A good source of info though, if you haven't already found it, is the Vasculitis Foundation (Front Page | Vasculitis Foundation). There's a section on Wegeners (see one of the links at top right of the page). On that site there's also a list of concultants willing to be contacted to assist doctor's in treatment of Wegeners if necessary. Pick a couple of names from the list, keep them handy just in case. Not saying you'll need them but handy just in case The list can be found at: Medical Consultants | Vasculitis Foundation

    Let us know how your mum is. What meds to they have her on?
    Forum Administrator
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    Hi Andrew,

    All I can remember is Prednisolone. She seemed much better today and her eyes have started to clear up. The steroids have really started to make a difference. Her chemo will be starting on Friday, I think through IV initially, then pills. The doc said today that it looks like her kidneys are ok. They are making her do a 24 hour collection of urine to make sure that its all clear.

    The doc said that if she responds well on chemo, then she maybe able to get home next week. The doc indicated that they will keep her on long term treatment, 5+ years. I will try and find out exactly what meds they are putting her own.

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    Great that her kidneys are ok, that's a big load off AND that she might be coming home next week. Great news!

    It sounds like the doctor knows what he's doing. The 24 hour urine collection is the best (so I'm informed by my doc) indication of kidney function. It can be a pain when you're doing it at home because you can't go out (unless it's only for a short time) because you have to collect your wee wee at home. I suppose the alternative is to take the container with you wherever you go but it's not a good look
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    LOL, It's bad enough collecting in hospital, couldn't imagine trying to do that whist your out. Plus it's a little tricky, when your a lady. The containers tend to be rather large!

    Thank you for your responses. I feel much more reassured by this and website as a whole.

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    You know, I've often wondered how lady's work with that bottle. It IS rather cumbersome

    Glad this site is helping!
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    Hi Lucy,

    It must be really hard for you all at the moment. It sounds like all the right sorts of things are happening and I hope your mum gets though this nice and quickly.

    With regards to the pred and chemo, it can be a pretty awful time and that can have an effect on mood. Starting pred is like getting a huge burst of adreneline, and I remember feeling really amazing for a few weeks before my body got used to the dose of pred, then my symptoms returned and the long haul began. With the chemo as well I did feel that I became a complete bitch. When you feel really rotten and you're stuffed full of drugs it seemed (to me) that my 'self sensor' buttons got switched off. I'd hear myself saying the most horrible things, particularly to the people closest to me. They seemed to just 'fall out of my mouth', and I'd see their faces and I'd feel utterly awful about myself but not have the energy to apologise. I don't know if this is a common reaction, but if it does happen to you don't listen - it will not be meant seriously.

    If your mum gets the munchies from the pred (it doesn't seem to happen to everyone, though it does to me) the desire to eat is overwhelming and the result of this can be quite dramatic and really devastating. I had my 21st while I was on the full Monty, and I'd put on vast amounts of weight. I hated the sight of myself and tried to avoid having a party. My family, though, really wanted to celebrate the fact that I was still alive, and arranged a 'surprise party' with all my friends and family. When I walked into the room and saw everyone I just burst into tears, turned to Mum and said "I told you I didn't want a ******* party!" Nearly twenty years later I still remember the look on her face and it's one of the most shameful memories I have.

    You might need to be very patient and forgiving, but you obviously have a great deal of love for her, and she will be needing that. Good luck to you both, and please keep coming back if you need a place to rant, and maybe point your mother in our direction.

    Sarah x

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    Hi Lucy and welcome

    Sorry to hear that your mother was diagnosed with WG, but it sounds like she's finally getting the right treatment. As Andrew says, most of us Weggies have chemo and steroids, it's a proven combination.

    I had cyclophosphamide for 3 months (daily tablets only, no IV), then Imuran (immune suppressant also used as anti-rejection medicine for people who have transplants) since then. Imuran is a lot less harsh - I haven't had any side effects from it.

    I did lose my hair initially on the cyclo, though not everyone does. Something to be prepared for. I also had menopausal symptoms (even though I'm only 36), but thankfully that stopped when I finished the cyclo.

    As Twice says, the steroids can cause weight gain, mood swings, sleeplessness (they make you buzz) but they can also make you feel rather euphoric. And, of course, they are *very* effective.

    Once your mum's symptoms are under control, I imagine she'll be sent home and monitored regularly (blood tests) as it's our blood which indicates if the disease is active.

    I hope your mum continues to improve.

    Don't hesitate to ask us questions - chances are, whatever your mum's going through, one of us will have been there too. It can be a comfort to know that.

    Take care
    Suzie
    Diagnosed March 2007 (kidneys only)
    Currently on 150mg Imuran, 12.5 pred (alternate days)
    Living a normal life!


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