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[Cindy M]

I agree with all of you. This site has been the best thing for me. I am not on it very much because I am living with my sister while I am waiting for my place to be finished so my usual routine is out the window. I do try to get on whenever I can. I find information, understanding and yes the nagging the best. Keep up the good work everyone.

[sharon]

I must admit luce i often take the "wait & see" approach too, much to the frustration of my friends (they are nurses), so yes i really appreciate this forum, i have learnt that just because a dr has not heard of it (re:syptoms) does not mean it is not related, and it is not in my head. A big thank you everyone!!

[Col 23]

Hi I agree with all the comments, I felt very isolated before joining this group when Diagnosed. Just wondering Doug about these stats and the 2 year point after diagnosis.
Thats a newy for me 2 years?? Can you elaborate abit on this one. I suppose the question is about getting into remission of some kind before then, is there a time limit? Can anyone else also elaborate. What really tells us we are in full remission, how is that quantified? Sorry if this is all over the place Im a bit scattered today.
cheers Col 23

[Doug]

Sure, Col 23. There was a very low rate of survival for people with WG before an effective treatment (Cytoxen plus Prednisone) came about circa 1970, with 35% surviving 6 months, 15% surviving a year, and only 10% surviving two years. I've turned the numbers around to survivors rather than the usual presentation of those who died. The survival rate at two years is now about 92%.

When my doctor told me I'd be dead within 2 years, he was basing that on my fairly advanced stage of the disease (with kidney, sinus, and lung involvement) and, I feel, his limited knowledge of the disease. When I finally learned the prognosis from WG information printed from internet sites that my boss and nurses in two hospitals accessed for me, I was certain I was one of the circa 90% who survived to the two year oint, of course! Perhaps that contributed something to the fact that I did survive the initial two years.

As far as how long weggies live under expert care by WG specialists is concerned, I've never heard a number. Several of u on the site have had the disease over 10, 20, 30 years and are still around in some form or other, dealing with our new normals as they change. I've had it for a bit over seven years. My guess is that survivability is as variable as the variations in this disease we each have.

I interpreted production and test data on industrial and hydraulic hose for a much-to-long nearly 36 years. One of the guiding principles I tried to keep in mind when talking numbers with people in positions to make changes in proiducts and processes is summed up in this Italian proverb: "Torture numbers and they will confess to anything." Don't worry about the numbers.

Remission is a numbers game. The general definition many of us us on this site is something like this: "When we feel we've hit a new normal, that is, are stabilized at a point where we feel able to resume typical activities for us, even if at a limited level." I'm sure I've read a better definition of "remission" here, and, I hope, the author will come back on line and give that finer definition. It's frustrating till you get there (and other things you've posted indicate you are ready to be there!), but concentrate on following your doctors' instructions closely, learning all you can about WG and its treatment fpor reliable sources (try to verify details by checking as many sources as possible- it's easy to jump onto a hope bandwagen, chasing after the first good news you hear- I bet most of us have done this at least once!). When I reached remission, it wasn't some big "Eureka!" moment, it was a day that I noticed my body didn't have all, or at least most of the familiar sensations I'd come to associate with WG. I tend to think of the last time I took Prednisone as the beginning of remission. Ha!

[elephant]

Col, I had a kidney transplant in 1989. I started with high dose of Prednisone and Cyclosporine( immunosuppressant/anti rejection med) it is also used in Wegeners disease but it is so toxic to the kidney....they don't like to use it only in extreme cases. Anyways I asked how long will my kidney last( transplanted)? All the doctors ( kidney and surgeon) said that I can live a very long life, just take care of yourself and watch out for sign and symptoms of your kidney's getting worse. Plus I saw my kidney doctor four times a year.
With new medicines and research there will be better( less toxic) medicines for us.
Doug is right, forget the numbers, you will survive this and get into remission. It's a long ride, but will all get there!!!

[Sangye]

All great points!

I've decided that when the day comes that I'm off pred and don't have the symptoms I've always had of active Wegs, that I'm going to declare myself in remission. My labs always look fine anyway so we can't really go by that. I've been the one to point out when I'm flaring, long before the docs concede. For roughly 2 years I wasn't officially flaring but the Wegs was definitely very active. I know the symptoms. Some have disappeared but they might only be suppressed by the pred. So until I'm off the pred I can't say for sure if the Wegs fire is out.

Does this make sense?

[elephant]

It makes perfect sense. Prenisone masks many things. Sangye, you are almost there!

[Cindy M]

Doug how long has it been since you have been off of prednisone?

Sangye why is it that our blood work can come back better when we are still feeling so crappy?

[Sangye]

Blood work is very limited in what it can measure. It can't measure pain, side effects from drugs or a gazillion other things that make us feel unwell.

Medical interpretation of blood work is even more limited, because if a test result is "in range" they say everything is fine. Holistic docs use a narrower range to interpret the same blood work, so a "low-normal" medical result might be in the "alarm" range holistically.

For example, my carbon dioxide often comes back low-normal or slightly below normal. The MDs think it's okay, no problem. But biochemistry tells us low CO2 means you're not producing enough energy. This starves various systems and disease develops. And you feel really crappy--tired, weak, even depressed. In my case, the cause of low CO2 is usually a vitamin B deficiency. I tend to burn through B's and have to stay on top of my food and supplements to make sure I'm getting enough. Stress, sweat and diuretics deplete my B's.

[JanW]

A lot of docs will also tell you that bloodwork is a lousy way to measure how 'active' WG is in your system. For instance, my rheumy has patients with WG confirmed by biopsy who have never had positive ANCA and those with positive ANCA where the biopsies do not show WG. I have high P3, but yet feel generally quiet well -- my symptoms are very localized -- I would say I have none of the systemic symptoms (e.g. fatigue, all over joint pain, fevers) that some folks here complain about. It seems as though my WG destroys something -- scars my windpipe, collapses the bridge of my nose, swells my ankle, and then goes fairly quiet. My doc said that he would be looking at blood work primarily to make sure the mtx isn't hurting me, and checking for the very general things like CR-P and SED rate going lower vs. saying, "hey, your P3 is lower, so you're getting better."