new WG sufferer

[louisej]

Hi

I just got told before christmas that I have WG and will get an appointment in the new year for treatment .

I am scared and cant take it in that i am ill.

What do i do next ???

[PatriciaAnn]

Hello Louise

Sorry you have had to join us, but you will find that we have all been through exactly what you are going through, and we've come out the other side, so it's good to know you aren't on your own. It is scary. Being diagnosed with something that no-one has heard of, wondering what it will do to us, and what sort of medication we will have to have.

Susan and John Mills have quite a bit of info for the newly diagnosed patient, so you can contact them through the website - vasculitis-uk.org.uk On the site you will find quite a bit about vasculitis and also there are copies of the previous Newsletter/Journals which will give you some additional information.

Patricia

[PoppyS]

Hi Louise

I would agree with everything Patricia says the Vasculitis Group are wonderful and such a great support and a mine of information. I was diagnosed with WG in 2008 and knew nothing about the groups but once I discovered them have never looked back.

There are local groups also that you can join but write a list of questions for you visit to the Consultant. As Patricia says we have all come out the other side.

Hope all goes OK with your treatment.

Sandy

[patsy]

Hi Louise, You have found salvation with Susan and John Mills, keep in touch with us all and your progress through this illness. It does take some getting used to I was Diagnosed in 2009 never heard of the illness before thought it was a bout of flu!!!! if you have any questions or concerns ask here but more important tale a list of questions to your consultant and keep asking. Your gp will be a little in the dark as they know little about this illness ask your gp to read up on it mine has.

Stay in touch

Patsy

[louisej]

Hi

Thanks everyone for getting back to me. Wish the holidays are over and the consultant would get intouch so i could get the treatment started. I am finding it had to swallow, this is a new symptom to me.

Does anyone find it hard to get to sleep? and how do you tell people?

Louisej

[Maureen10]

Hello Louise

I've sent you an email with my telephone number as I'm part of the Grampian support group - did you get it?

Mo McBain

[louisej in reply to Maureen10]

Yes thank you.

[PatriciaAnn]

Hi Louise

I meant to include this link with my earlier message. You and your family may find the contents helpful. I know I did when I was first diagnosed. It is a little out of date in that it doesn't mention Rituximab, but the rest of it is informative:

stjames.ie/Departments/Depa...

[Hidden]

Hi Louise. Welcome but sorry you join us in such circumstances. I echo what's been said above and urge you to use the network of well-informed & experienced patients & carers here for support. I felt the same emotions as you when I was diagnosed almost 5 years ago but despite a challenging ride at times, I'm still here and intend to be so for a long time yet.

One piece of advice I'd offer is to keep a diary of what you're going through. If only as an aid to remembering who said what and what treatment and results you receive. Benchmarks can be very useful as time goes by.

Also don't be afraid to ask questions of your health professionals as well as here. If you don't understand their answers or want a second, third or fourth opinion then ask again. For me, it's been vital to take control of my disease and where necessary, make things happen. Doctors don't always know best and the health service is a shambles when it comes to admin etc. so be prepared to push hard for what you need. If you can get direct access to a good consultant (ask here if you have a name of someone treating you and see if other patients 'rate' them) and bypass your GP when you need action then don't be afraid to do so.

I don't wish to sound hard but life won't be the same for you in the future but you can live a normal life and maybe take solace from the fact your days will seem all the more valuable. See yourself as unique & one of a privileged group of people who have been given an opportunity to see life from a different perspective. I know it might seem very daunting right now but please remember you're not alone and there is every reason to look forward to the future.

Wishing you my very best & healthy wishes.

[JimL]

Hi Louise,

I agree with all the previous comments, especially those of Martin Thomas. Life will not be quite the same, but you will probably be able to do most of the things you used to do.

I was diagnosed just before Christmas 2010, and while I am not yet in remission I am back at work and leading somewhere near a normal life. I have learnt to listen to my body and not to overdo things and if I feel tired to have a rest or even a short doze. The worse thing I found was that from being fairly fit and well I now have to take a regime of drugs on a daily basis, and MUST NOT forget to take them.

You ask how you tell people. Be honest and open, at first I wrote to all my friends and family telling them what I had been diagnosed with and told them what my symptoms were, Now I email and text them with updates.

There have been times when I was fed up being ill and sometimes scared because things have not gone as well as I had hoped. I have found it best not to bottle up those feelings and to be honest with those I am very close to and seek their support and encouragemnet.

What is your consultant, are they a rheumatologist or a specailist in vasculitis?

Jim

[louisej]

I have now seen my specilist, and been in these past two daysas a day case for tests waiting on two results then they will know what to give me and how much.

So fed up with hospitals least got in quick. It is just the journey it takes so long to get to Aberdeen.

Least we are on the right track.

Is traveling a problem with WG any travelling ?

Also what do people do when they are on steroids with extra weight gain? I dont want to put on weight got enough already that needs to come off.

Louise

[ehughes]

I was diagnosed with WG in Feb 2011..I believe the condition was caused by the Flu jab,but that another story....I was initially on 80mg of steroids(this is now down to 7mg)also Mycophenelate Mofeteil,& Calci chew.My lungs & kidneys were affected but the Registrar keeps emphasising to me how lucky Ive been in that I dont need dyalisis.I too have put on loads of weight but joined Weight Watchers this week,& am trying to walk a mile or two each day.I now try & take each day as it comes,but some days feel better than others,first thing in the morning is the worst time for me...forgot to say I had 5 courses of chemotherapy...

[louisej]

Hi

I have just started my steroids on Saturday as I only just got them wont get the cyclophosphamide till monday, when the local chemist get them in. do you get a deafness and a sound of rushing in the ear, i have this in my right ear, and my eyes get very sore and sometimes it is hard to read.

I am seeing the consultant tomorrow. The attention I have had has beeen second to none, excellent.

louise

[louisej]

Hi

I am now about week and a half into this, On all my tablets, do they make you breathless,? never been like this when walking and sometimes talking, I am also have a deafness in my right ear and so tired is this normal?

I feel ok and do housework then get so worn out, but I have been diagnosed really early with this condition and cant get my head round that I am ill. Hate taking the amount of tablets. Keep thinking they have got it wrong.

Any help so welcome.

Louise

[Llinos]

Hi Louise, both my ears were affected so get an ENT referral also the tiredness is part of the disease so listen to your body and rest. 11 yrs on and i still get chronically tired but a 15 min snooze works for me. There is light at the end of the tunnel but dont expect to jump back to a normal life just yet . Slow and steady girl x

[louisej]

Thanks Linos

[braindamage]

Hi. First thing is DON'T panic. It is a very frightening experiece to be suddenly face with something so rare and relatively unknown. Take each step at a time and involve your loved ones. It's just as hard for them - the more youall know and learn, the better i found it to keep thingss in perspective.

You will get much better! Enjoy each day.

ATB

Braindamage46

[louisej]

Thank you .