Greetings from London

[vic flange]

Hi. I got diagnosed with WG 6 years ago after waking up one day with incredibly painful blood-shot eyes. I went to Moorfields where a consultant suggested that the problem may be rheumatic. So he referred me to the Royal Free where the excellent Dr. Richard Stratton diagnosed me as having WG.My main problems have been with my joints but it did affect my heart which resulted in me having a pacemaker fitted 4 years ago.
I'm currently under Dr. John Lanham and feel that I have made good progress. From being on 25mg of prednisone a day I'm now on 4 but I am still on quite a few others.
I'd never heard of the disease until I was diagnosed and have never met another sufferer. Hopefully I can find out how other sufferers cope daily and maybe help some people myself.

[gilders]

Welcome Vic,
I also have heart failure, but it's never been confirmed that there is a connection to my WG.
If you don't mind me asking, what is the exact problem with your heart and in what way did WG cause the problem (vasculitis?)

As for finding out how we all cope, there isn't 2 answers the same. WG effects people so differently as it can be very aggressive or much less so, plus different organs are effected.

From your brief introduction I'm picking up that things are not too bad for you at the moment? I hope so.

This is an international forum, so if like me you can't sleep at night, there's usually someone in the US or Oz that will be awake and willing to listen.
Good to have another UK resident on board!

[vic flange]

Thanks Gilders. It was indeed vasculitis that affected my heart, the cardiologist that fitted the pacemaker said that in his opinion it also damaged a valve, which will need to be operated on at some point.

[mishb]

Hi Vic,

Welcome to the forum that never sleeps.

If you check out the Wegs Map at the top of the page, you will find many UK members - maybe one or two are close to you.

How do I cope daily - I take the meds as prescribed, I work daily to keep myself busy, I continually read this forum (even at work - don't tell the boss) and I read, play computer games, chat to people etc - anything to keep my mind from thinking about some aches and pains and a blocked nose.

Take care and I hope we can hear some more of your experiences with WG

[gilders]

Make sure you keep up with looking out for any signs of a flare. I've found that each time I've had a flare it has damaged my kidneys more each time. If one of your heart valves have already been damaged, a flare that isn't under control quick enough could be the tipping point for your valve.

My angiogram didn't show any damage and although my cardiologist did at one point blame my WG for heart failure, he couldn't give a reason why or how WG was effecting it. To be honest, I think he'd ran out of ideas so blamed a condition that he didn't know much about, except that it can effect any part of the body.

[vic flange]

Every now and then I get severe lower back pain, which I thought was a sign of kidney trouble. My doctor has said that they're ok according to my blood test results. I'm just glad I no longer spend nights awake on the sofa because my shoulders are in so much pain.

[Alysia]

Hi vic,
welcome to the forum :hug2:
6 years - you are already "WG-veteran" :cool1:
you prob have a lot to teach us about living with WG....
how do I cope with it ?
taking my meds, eating only health food and not much, trying to sleep enough, walking every day not less then 30 min, going to psychologist once (or twice) a week, doing blood tests once a month, visiting all kind of docs, working in a work which is good for my soul, and - this is the most helping source - if you are a weggie - reading and writing in the forum.
I am already "addicted" to this place :blushing:

[Wegetarian]

Welcome Vic!

Don't you guys have any support gropus in England? Just curious how you never met a Weg. Went today for a local group for people with rare Rheumy-diseases. There were two other Weg's there (one was diagnosed in 1964) and a bunch of vasculites. That said I'm not sure if I'll go again. They meet once per month, but so much of the time was spent with someone complaining about health care services that I just didn't find it all that useful. Was certainly nice to meet a few Wegs though and hear in more general terms about the treatments of vasculites here, as its all new to me.

[gilders]

Welcome Vic!

Don't you guys have any support gropus in England? Just curious how you never met a Weg. Went today for a local group for people with rare Rheumy-diseases. There were two other Weg's there (one was diagnosed in 1964) and a bunch of vasculites. That said I'm not sure if I'll go again. They meet once per month, but so much of the time was spent with someone complaining about health care services that I just didn't find it all that useful. Was certainly nice to meet a few Wegs though and hear in more general terms about the treatments of vasculites here, as its all new to me.

I've never met another Weggie. My wife works with someone who has a relative with Wegener's, but I've not personally met one.
The one you've met who was diagnosed in 1964 gives us all hope and beats my 1995 diagnosis!
I don't know of a WG support group in England, but there might be.

[vic flange]

I've looked for online groups for UK sufferers but the only one I've found isn't well supported. I posted there months ago and nobody has since! I'm lucky that my family are very supportive especially at occasional those times when I feel a bit down when it dawns on me that I'm probably as healthy as I'm ever likely to be again!

Fortunately those feelings never last too long.

[Dirty Don]

I feel a bit down when it dawns on me that I'm probably as healthy as I'm ever likely to be again!

Mmmm, yeah, we all have those periods I'm sure...I'm kinda going thru one now...but I digress as usual...you may be as healthy as you'll ever be today, but this disease is plagued with hills and valleys. A few months ago, I was on top of the world, am kind of lagging right now...I expect, don't like it, deal with it, and, sometimes, just effing ignore it cuz it ain't gonna get better...seeeeee, it happens, then one finds a way to bounce back...don't compare now to what you had...I mean, do it, but don't dwell on it...hang tough vic!

[gilders]

Dirty Don mentions something that I mentioned on another post - don't dwell on what you can't do now, that you used to be able to do.
It is a fact that my kidneys will completely fail in the future. Therefore I have to be happy with my current health as it can only get worse, unfortunately.

You'll be surprised that no matter how bad your health gets, there's still things that you can do that you take for granted until they've gone.

Geez I must be in a morbid mood today.:confused1:

[Dirty Don]

NOOOOOOOOOOOOOOOOO morbidity! My coffee is cold and the Xanax is in the other room and I don't wanna get up! LMAO! It's good that we 'face' these issues here...it's what this wonderful blog is all about!

[Wegetarian]

I've never met another Weggie. My wife works with someone who has a relative with Wegener's, but I've not personally met one.
The one you've met who was diagnosed in 1964 gives us all hope and beats my 1995 diagnosis!

Yeah, she had some interesting stories for sure. Her doctors back in the day wouldn't give her much hope though, they couldn't promise she'd live. The cytostat she used back in the day gave her bladder cancer too (those cytostats are no longer used), but she came through. Kind of a positive person too, I mean she had gone through a lot for sure but was still trying to give us hope and meant it will likely not be as bad for us.

A sweet old lady in particular stayed in my mind. Although she had been through a lot she said she is the boss of her disease and said a good sense of humor (and being a bit crazy) has helped her a lot in adapting to the situation and to go through the hardships.


My coffee is cold and the Xanax is in the other room and I don't wanna get up! LMAO! It's good that we 'face' these issues here...it's what this wonderful blog is all about!

Ah, first world problems :D I also seem to have mainly them too. Feels like I've already browsed through the entire internet, and I already ordered everything from Amazon and Ebay so I'm all out of stuff to buy. Maybe we should start our own forum for people suffering from first world problems?

BTW, I got myself a nice coffee machine a few weeks ago, makes so much better coffee and cappuccinos than my old one. Wish I could make you a hot cup of coffee since you seem to share my liking for coffee.

[Alysia]

Mmmm, yeah, we all have those periods I'm sure...I'm kinda going thru one now...but I digress as usual...you may be as healthy as you'll ever be today, but this disease is plagued with hills and valleys. A few months ago, I was on top of the world, am kind of lagging right now...I expect, don't like it, deal with it, and, sometimes, just effing ignore it cuz it ain't gonna get better...seeeeee, it happens, then one finds a way to bounce back...don't compare now to what you had...I mean, do it, but don't dwell on it...hang tough vic!

Dear Don, and everyone else around....

I know that feeling... moments/ days of "down"...:crying:
thanks God they don't last forever.

for us, Don, you are allways at the "top of the world" :love:

I am sending my wishes for better days :hug1:to all of us....

[Dirty Don]

I am without words...do you know what a moment that is for me?!?!?! LOL! Thank you m'dear...you are so kind...it's nice to have kindness on here in your words!

[annekat]

Welcome, Vic. I don't know how you did without this forum for 6 years but I'm glad you found it and are here now! It is a big part of my day to check in here, and I was lucky enough to find it as soon as I thought I might have WG. I hope it is a breath of fresh air for you and you will feel a lot less alone with this disease. I'm sure we have a lot to learn from your experiences, as you may learn some from ours, and the people on here are top notch and have a lot of support and friendship to offer.

[pwc51]

Hi Vic, Another UK resident! There are a couple of support groups around London - one is in South East corner and another mid/ north. (there may be more I am not aware of). There was a Surrey one which was very well attended but it has dried up for now. Generally there are few attendees but is a good forum to catch up and compare notes. Look for the Vascultis UK website - it has come on leaps and bounds in the past couple of years. PM me for further details.
Best wishes, Peter

[vic flange]

Thanks all. Peter, I will PM you it might be nice to have fellow sufferers to talk to. I had a hospital appointment today and I suppose I had some good news in the my prednisolone and mycophenolate doses have been reduced. On the down side I've now been put on atorvastatin.

[Dirty Don]

I've been on a statin for a while now...didn't want one, tried to do it diet-wise. It helped, then I started taking the statin too tho as doc wasn't happy with results of diet. But, I only took a pill every other day...cholesterol dropped 25 points below the current suggested 'safe' line for cholesterol. So, all good...then a buddy suggested why not take it every day as suggested and see what happens...duh...cholesterol dropped another 30 points in the year...I take my statin every day now...no side effects, just good cholesterol! Good luck!

[Geoff]

Hi Vic,

Welcome aboard the UK Weggie Bus!! I was DX in 2008 and have 'enjoyed' a few roller coaster rides with WG. I have however been very fortunate to meet up with lots of Weggies in and around my corner of the world (well North Essex actually!)
I suscribe not only to this forum but the Stuart Strange - Vasculitis UK as well as meeting up with fellow Weggies in Essex. We normally meet up in a nice pub for a pint and a lunch and I end up in the evening with jaw ache and a sore throat from too much talking!
I am lucky to be under Dr Jayne at Addenbrookes and we also have support the Cambridge Vasculitis Support Group. We generally get about 24 people turn up for lunch in Cambridge and in fact there is one scheduled for December if you are interested. I could PM you with the contact details if you wish.
Its no secret to most of the other Weggies on this forum that I have strongly recommended taking the chance of meeting up.

WHo knows we may cross paths soon?

All the best!

[Alysia]

Its no secret to most of the other Weggies on this forum that I have strongly recommended taking the chance of meeting up.

WHo knows we may cross paths soon?


good idea :thumbsup:
but how can we do it?

[annekat]

good idea :thumbsup:
but how can we do ? Well, it has been suggested to meet up on Skype. That is not something I am willing to invest time and energy in at this point, especially with my old computer and no other more advanced technology. But it might work for some people quite well and be a lot of fun! I know there was a thread on this fairly recently. Of course, meeting up in person would be the best, and we always enjoy hearing about these encounters and seeing pictures.

[Debbie C]

I am without words...do you know what a moment that is for me?!?!?! LOL! Thank you m'dear...you are so kind...it's nice to have kindness on here in your words!

That IS some kind of momemt...your coffee must be weak !!!

[pberggren1]

Let me know your skype name Anne and I will call you sometime. I have already skyped with a few Weggies.

[vic flange]

Hey Geoff, that Cambridge meet sounds good please do PM details. It's quite refreshing coming here where people have actually heard of Wegener's.

[annekat]

Let me know your skype name Anne and I will call you sometime. I have already skyped with a few Weggies. Sorry, Phil, I do not participate in Skype. My computer is too old for the latest version, perhaps could use an older version. But I just don't want to add another activity to the things that take up my time right now. So, maybe someday when I'm able to be more relaxed about things. I only brought it up because Alysia asked how people could meet and I knew it had recently been discussed on the forum. It would be fun, I'm sure!

[pberggren1]

Maybe someday I will take a drive to Washington and see you lovely folks in person.

[mishb]

I thought Phil was getting the planes organised, so that everyone could meet :unsure:

Still waiting :flapper:

[pberggren1]

I can't afford the upkeep and pilots anymore on the little bit the government gives me each month......lol

[Alysia]

I can't afford the upkeep and pilots anymore on the little bit the government gives me each month......lol

Batman can be the pilot himself... as for the upkeep, need to think of something.... :confused1:
I bet his assistant can find something...