not a great subject ,but

[quinnster]

does anyone have any links to what survival rates are for vasculitis patients

read some stuff,but its all very sketchy,not its not the best subject,but would like to see what the future holds

if anyone can help thanks

[Hidden]

clinexprheumatol.org/articl...

diposit.ub.edu/dspace/bitst...

[quinnster in reply to Hidden]

thanks most helpful

[Chris-Bromsgrove]

Hi Quinnster. I’ve never paid too much attention to statistical data on vasculitis survival rates. The reason for that is that I think there are far too many variables to relate it to your own personal condition eg the type of vasculitis you have, how badly it has initially affected you what drugs you are on etc. I believe death due to the disease is fairly rare. The time of highest risk has got to be when you first develop the disease and the length of time it takes to get the correct diagnosis and the right treatment. Once you are over that hurdle then it has to be plainer sailing from then on. However having the disease does put you at a greater risk of a shorter life span than if you did not have the disease. I like to look at that in perspective. Going about our everyday lives is a risky business; we eat things which are bad for us, we can be genetically predisposed to ailments, we expose ourselves to dangerous diseases, we drive a car, smoke, climb ladders etc. etc. Vasculitis is just one more risk to put on the pile. That way I feel much better about it.

Hope that helps

Chris

[laidbackreader in reply to Chris-Bromsgrove]

Thanks Chris, you have put this really well. When I was first diagnosed in 2004 I felt a bit overwhelmed by all the scary info and stats.

My philosophy has always been, 'today is ok, so get on with it'

I've had a few flares which have slowed me down a bit, but I cope by looking forward just a short way.....next week or next month. The dim and distant future will take care of itself!

[quinnster in reply to Chris-Bromsgrove]

thanks chris,very positive answer,and I am a positive person.

was just curious,but again great answer thanks

[eognij]

Hello Chris what a great response . My partner was diagnosed with CSS in July 12 and has a similar outlook to yourself. After all hospital admissions including a very recent one due to pleurisy and pneumonia he has always remained strong. I hope you don 't mind me saying I admire your attitude as although not a fellow sufferer I have seen the impact that vasculitis has had on my partner. Regards Jackie

[PatriciaAnn]

Gosh Quinster - if we could second guess what the future held for us we would probably go mad.

I do believe that at one time, our survival rates were pretty slim due to the fact that there weren't the drugs available which we now have prescribed. Be careful what you read, some of the stuff on the internet would have us all dead within 2 years because it is based on out of date information.

There are so many variables which could affect individual longevity. We aren't statistics we are individuals.

So try to keep positive, don't worry about something you can't control, put your faith in whatever you feel is appropriate, take you tablets and hope you don't get knocked down by a bus. (lol)

PatriciaAnn

[Voutton]

Great answer Chris Being positive no matter what gets thrown at us is the only way to live Have a fun day

[jackrussell]

Just for information,( and I hope some reasurance ) I,ve had Vasculitis for 23 years ,still going strong,not to say it,s all good but as Chris says ,each day as it comes.

[cedric in reply to jackrussell]

it as helped I have vasculitis for a year now but I don't think they know whitch one yet waiting on anoyher blood test I have good days and some bad days

[John_Mills Volunteer]

There are members of Vasculitis UK on the database who were diagnosed in the early 1980's.. we met a lady a short time ago who was diagnosed with WG (GPA) 40 years ago. I was diagnosed 12 years ago and will be celebrating a very special birthday this year.

all the best

John

[Dbis22]

I was diagnosed 26 years ago. Many complications at the time and plenty of drugs. However, other than a limited relapse 10 years ago, I have suffered nothing too major although my ears are an ongoing problem. So, 26 years and I'm still here. Hope that gives you some encouragement!

[jackrussell in reply to Dbis22]

I have the same problem with my ears,Dblox blasted nuisance isn,t it,One thing I find rather funny about it , do you find some people have a tendancy to talk to you as if your stupid ,rather than it,s a problem with your hearing !!.

[Dbis22]

Well, yes, as soon as you give even a hint of less than 100% hearing most people start talking to you as though you were French! Very loud with hand waving. Hence, I tend to keep it quiet! I have lost track of the number of tubes I've had put in over the years - trouble is they never stay in place for more than 6 months!

When they kicked me out of hospital all those years ago the Consultant told me to always ensure I had a good Ear Surgeon. Thankfully, I do, first class and we've got to know each other quite well! One of his regulars!

The hearing thing is a nuisance but does have its advantages. If I just say I've been very happily married for a long time I'm sure you'll get my drift! What's more, she still thinks my hearing is terrible!

[AndrewT]

Dear Quinster,

To answer your question, as best I can. My survival rate was less than an hour! That was sixteen years ago, if this answers your question good. if it doesn't then I don't know. I'm now on dialysis, three times a week, and have had to go back to living with my mother BUT I'm still, very much, alive.

My advice enjoy your life, whilst you have it; yes we all have 'off' days, when we feel like sh..! Remember though that, even then, you have already beaten the odds, many times over.

Take care of yourself

AndrewT