Facebook

[Brooke]

Does anybody have a facebook page? I have had one for a few years. I just searched on there today and saw there was a page dedicated to Wegeners. I invited a lot of people to be my friend on facebook, I also posted this link for them to sign up on here.
This support forum seems a lot more user friendly rather than just posting comments on facebook, just thought I would ask though.

[Luce]

I'm on Facebook and there are quite a few support groups on there - none come close to this forum though!

[elephant]

I feel comfortable on this forum. I have visited others but like this the best.

[Sangye]

I'm not on Facebook. I used to belong to another support group in addition to this one, but left it many months ago. It wasn't very supportive! I love our group. :)

[jola57]

Same here Sangye, I started with another group but it just didn't feel right. This is the only group I have ever been involved with on daily basis and I am just so grateful to Andrew for starting it and to you all for being here and keeping the forum and us alive.

[jola57]

I am on Facebook but just because my sons and friends are on.

[Luce]

Speaking of Andrew, anyone heard from him lately?

[Doug]

I sent Andrew an e-mail to try to find out how he is, what's going on two days ago, but haven't heard anything back. As for support forums, I also belonged to another, but this is the one I found best suits me. Our off topic business makes it a biut difficult to search a topic, but I think that's a lot better now that off topic threads have been established.

Facebook. I'm on it because family likes that site, but I rarely use it. I'm not a fan of the games or the invites to play the games. I don't feel anything I post there is private, though one can set the parameters to exclude random visitors. There are a couple others I've sign up for that I just don't get, I guess, and rarely visit.

The site I like best is Daily Booth, but I've taken a haitus from that. I may visit from time to time, but I find the majority of users are much too young and vapid. There's a creepiness about that I mostly overcome by "associating" mostly with people who are older. On Daily Booth, a group of "old people" usually means a few in their thirties, fewer in their forties, and so on. I'm old enough to be some users' great grandfather! Barely. But nonetheless! Now, that's creepy!

Any news about Jack lately?

[Brooke]

I agree with everyone, I do like this group best!!! I did leave the website for others to join.
I saw a girls post on facebook who just lost her mother to Wegener's. I told her to join this group and I told her many of you do not believe we should have to die of this disease if we get the proper treatment right away. Unfortunately it doesn't sound like her mother did.

[elephant]

Brooke, that is tragic. That is why I am a nagger and a 1/2! I feel like if I don't say something then I am not doing my job. I have these little alarm bells that go off and I have to nag.

[Doug]

Our experience with death on this site this year reminds us of the simple statistic, 8%. That's approximately how many of us weggies don't live to the two years point after diagnosis. Therefore, I'm with elephant and the rest of the site naggers. (Do I have to list our names??) Take nothing for granted. Err on the side of life.

[Sangye]

I make no apologies about nagging. Like Elephant, I have alarms that go off. I'd rather have someone get upset with me for nagging but be alive and undamaged. Many of us had good awareness of our bodies before Wegs and that often goes right out the window with this disease and all the drugs. We can't always count on our usual intuition or warning signs to tell us something is wrong. Look at how many of us have developed silent damage.

I'm also getting concerned about Andrew. He hasn't answered my email with my contact info yet (from several days ago). I know he's crazy busy these days, so I'm waiting another couple days to send him a WHERE ARE YOU email.

[Luce]

I like the nagging, I'm lazy and often use the "wait and see" approach - but with Wegs you just can't ignore stuff and sometimes it takes a good nag for me to do something about it.

[JanW]

I found this site very early on, and though I've been on the others like Facebook and the yahoo group, I like this on the best. People on here have excellent medical knowledge and the ones who aren't there are willing to listen! If you weren't you wouldn't be here very long. Unfortunately some places it's really the blind leading th blind and you can tell that the culture is such that if you step out with an opinion (even an educated one) you can be told that everyon has to 'do what they feel is best.' That's a particular danger with this disease so to the extent that we nag, nag and nag, we are performing a valuable service. We are saving each others' lives.

[elephant]

Right on Jan, we are saving each other!

[jola57]

The remark is dead on (no pun intended), we all depend on our collective knoledge to give comfort and help when needed.

[pberggren1]

I've tried Facebook and Yahoo Groups and this one is the best hands down.

[Brooke]

I agree Phil.
I hope a lot of the people join this group. It scared me to read some of the stories - it seems like a lot of people are still dying from Wegener's!!!

[MCC]

I saw the facebook group and joined it, but I haven't posted on it. I also joined another Wegeners forum a 'yahoo group' but I didn't like the layout of it- all the posts appear on the same page. This is easier to read and come back to.

[Sangye]

The Yahoo format made me nuts. You can't tell who's who and there's no way to find an older post. So everything just gets repeated ad nauseum.

[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."

[pberggren1]

When I talked to my Rheumy on Thursday she said that we can't go by ANCA.

[Doug]

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?

April of 2005, Cindy M.

Sangye, scarey as it is, you make perfect sense!