My mother has WG

[lucy]

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.

[andrew]

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

[lucy]

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.

[andrew]

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?

[lucy]

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.

[andrew]

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

[Trish]

Hi Lucy
Welcome. Your mum is a really lucky lady to have you at her side as she will need all the support you and family and friends can give her at this time. One piece of advice is for her to listen to her body and not to let things go out of control before she seeks help. Unfortunately I feel I have done this as I was working and trying to solder on right up to going into hospital a few weeks ago and ending up having to have a tracheotomy due to the closing of my trachea. I think if I had of been a little more pushy during my monthly hosptial visits while getting my chemo they may have done something less drastic as I had been having breathing problems for a year but hadnt been refered to my ENT specialist by my Rheumatologist. I dont know if things would have changed but I do blame myself for not being a bit more pushy. When my ENT specialist saw me he said I should have rung him and made an appointment but I left it all in the hands of my rheumatologist. I would go into hospital for my chemo once a month, they would ask questions and I repeatedly told them my breathing was going down hill, but I think they thought if she is still able to work she must be ok!!!! I also find that I would like to find out more information via the internet but am completely washed out after working full time, that the last thing I want to do is check out the intenet. Also I have never been very medically minded so a lot of what Im told is like a foreign language to me. Sore eyes dont help either. This is where you will be able to help her gain a lot more information which will help her in her recovery. Good news thought is that I was told at my last chemo which was last Tuesday that my blood was good and that I am now in remission which is marvelous news, so will be starting on methotrexate to keep me in remission.
It is really good to hear your mum is improving. Send her my best.

Kind regards
Trish

[lucy]

Dear Trish,

Thank you so much for responding. It's great that you are in remission!

My mum is the type of woman who was always busy working and doing things. She never had time for herself and never wanted to burden anyone, including doctors. When she first got ill, it took her ages to get around to the GP and even then, she wasn't pushy with him and just accepted antibiotics. It was only when someone else went with her and pushed to be referred, did she start getting the appropiate treatment. It will be very hard for mum to have a slower pace in life. But I just hope she learns that her health is more important than anything else.

I've been telling mum in hospital the different experiences and advice given on here. I have already mentioned to her that if she feels anything, any small symptom, that she must let the docs know and not do anything. I think I will do this again. I'm thinking of printing this off and reading it to her so she can hear for herself what everyone has kindly added. Once again, I would just like to say thank you to you and everyone else who has responded to this thread. The experiences and advice are invaluable.

[jola57]

Hi Lucy, its so nice that you have taken the time to find out about your mums disease. I am 51 and was diagnosed 2 years ago almost. I have taken cyclophosphamide for 6 months and stopped month ago. I was very fortunate in that I didn't suffer any side effects - only now instead of wavy hair I have curls - no more perms for me lol. I wish your mum all the best and that she also has no side effects.
Jolanta

[lucy]

Thank you everyone for your support. It's been a while since I've been on here. Update on my mother is that she is coping extremely well on chemo. They have planned a slow lowering of steroid dosage. She should finish chemo around october time. Her voice is sort of returning. Very husky, but thats better then nothing at all!
The last IV chemo was the first time it had an effect on her. She was very weak and stayed indoors. Thankfully it only lasted for a day. I think it was because they are lowering her steroids. Apart from that, she has little or none side affects, which makes her one of the lucky ones.

Mum is extremely strong and I think without that strength, the disease and the treatment can get on top of you. Sometimes, without mentally feeling like you can heal, then the process I think can take longer.

I just wanted to say that if anyone out there is a relative or friend to anyone who has WG, then the best you can do is to listen to your loved one, learn from real life patients not medical texts and not let the thoughts of the disease and treatment get on top of you. The broader picture is that the WG patient has been diagnosed. Once doctors know this then the right treatment will be given. I will come back soon to write an update!