wg

[JennyT]

Hi
I am Jenny T. 52 years old and have been diagnosed with wg in december 2008.
It affected my sinus, lungs and kidney failure. Thanks to the meds and
dialisys my kidneys are function again so I don't need dyalisis anymore
I like to know more about this this wg and what are the long term prognoses
are. Can somebody help me out?

Thanks Jenny T

[crackers]

hi jenny and welcome.there are no hard and fast rules where WG is concerned.it affects everyone differently.if you read through the experiences of fellow sufferers,posted here in this forum,you will see what i mean.please come back with any comments or questions you may have.there are a lot of good,knowledgable people here who will be more than happy to help.come back soon.
john

[andrew]

Hey there Jenny...

The WG hit you in the same areas as it hit me. It sure is tough, especially when first diagnosed and you have no real idea what's going on. These days, the prognosis for WG sufferers is better but it still depends on the individual, how he or she has been affected and to a large extent, how treated as well. Glad to see that your kidneys are back online. I assume you're on Cytoxan (Cyclophosphamide) and Prednisone? Are you on anything for blood pressure?

You'll find in many ways you'll have to get used to a 'new normal' where perhaps you won't be able to achieve as much as you used to or you get tired quicker etc etc. Again, it's an individual thing but common across the vast majority of us Weggies is that we need our rest. You've probably realised already that you need to take it easy The more rest you give your body, the better chance it has of recuperating as much as it can.

I wish I could give you something more specific

have you found your day to day life to be much different after diagnosis? How long were you sick for before you got diagnosed?

[Jack]

Hi Jenny,
As the others have said, there is no single set of symptoms, treatment or outcome for this disease. My own experience is that I had similar symptoms to your own at the age of 30, but lost my kidneys. However, that was well over 20 years ago and I have managed to hold down a good job all that time in spite of some periods of sickness. Getting a transplant 19 years ago was the breakthrough for me. I could not have done it on dialysis. I recently retired, mainly due to all the drug side effects catching up with me!

[coffeelover]

HI Jenny,

I was diagonosed in Jan of 2009 at age 50. From what I read that is a common age for this to attack, although you will hear from all on this forum that it can affect many age levels.

We have that Old lady diagnosis in common anyway.
Lisa

[Cindy M]

Hi Jenny,

I have also been newly diagnosed in Jan/09 at the age of 45. I started feeling sick in November and after one doctors appt after another I went into emergency on Jan 1/09 and was recommended to ENT Specialist by the doctor on call. That was the best thing that happened, after reading my charts and history since November he felt that this was not a typical sinus infection but that I had Wegener's. I seen him on Jan 5th, he set me up for a sinus biopsy on Jan 13th, had an appt with a Rhuematologist on the 14th and got the results back by the 15th. I have been up and down since then, changing my predisone amounts (having to go back up) and changing from methatrexate to cyclophosphamid. I am looking forward to the day that I can lower the preds and hopefully lose puffy round face look

Also, I live in Alberta, is there anyone else out there from this area?

Cindy M

[coffeelover]

Cindy,

I have been mis diagnosed many times with sinus infections when really I had sinus difficulty due to Wegeners. Do you and any of the other girls over 40 think our women hormones have anything to do with the appearance of Wegeners? I know it is not the cause, but could it have contributed to the symptoms? I am just curious.

Sorry guys to talk this girl talk. I would be glad to have your responses as well
Lisa coffeelover

[Doug]

We've speculated on many things: would any of us be surprised? Jenny T., welcome to the forum! Isn't Phil a Saquatchian!? No. Let me know what people are called from the province next to Alberta. Your symptoms match many of ours, as noted above. You mention kidney involvement, which is the "severe" form of Wegeners. Read through this forum, and you will find lots of things to be mindful of. I have the severe form of WG myself, but am in remission. I was diagnosed in December of 2003. I'm still dealing with follow-up visits with my pulmonologist, still taking a few medications, but only one directly tied to WG. There's been some serious silliness in some parts of this forum lately, but don't let that get in the way of reading the seriously serious parts where we each share our histories with WG and what we've learned about dealing with it. Sangye brought up the best way of thinking of WG: you aren't fighting it (it's for life), you are floating from one "new normal" to the next. Look for her words as I think she put it a lot better! Like Jack, I recently retired at just short of 61 (which mean the Social Security checks won't come until after March of 2010- never mind, I held back enough money to live modestly and to afford a few luxuries). The vicissitudes of WG and some health issues that came out of my WG-weakened state didn't break me down- I'm generally a very up-beat, happy person- but it did remind me that I may not live into my 90's, like many on both sides of my family did or do. I retired so I could do volunteer work in my community and other things I want to do before (if) I reach a point where I no longer can these things or am (sorry!) dead. As for retirement: I LOVE it!! Being a Weggie isn't all fun and games, so learn to deal with the lows, knowing that you can ask us how we deal with things, what might be the next stage you experience.

[Sangye]

Hi Jenny and Cindy,
It's nice to have you in the group. Glad you're here, but sorry you're here. The most important thing for newly diagnosed folks to know is that you must have docs who are very skilled in treating Wegs. I and countless others have made the mistake of staying with docs who were okay for more typical autoimmune diseases (eg, MS, RA), but never or rarely treated Wegs. Mine almost killed me.

The Vasculitis Foundation has a list of docs who will consult with your docs for free, and help them manage your care.

The thing I said once that Doug was referring to is that I've learned to float instead of fight. I didn't learn that until pretty recently, and it's not been my natural tendency in life, so I have to constantly remind myself. Wegs is like being in a washing machine sometimes, so just roll with it a bit and you'll get through each spin cycle.

Lisa, though Wegs isn't one of them, most AI diseases affect women beginning in their teens, early 20's or 40's. So the Hormone theory is certainly a likely one. There are many explanations for why that might be. With Wegs, I dunno. It affects men and women equally. Of course, the amount of estrogen exposure we all have could explain that. My guess is they're eventually going to find several causative factors, hormones among them.

[coffeelover]

Yes, hormones! Well, some of the readings I have done on WEGS says that it affects women mainly in their 50's, right around that life altering "time of life" and that is exactly when I started to "go downhill" as it were.
On another note...I seemy rhuemy tomorrow. Wish me luck! I am feeling good, but in fear that she will find things that I don't feel.
LIsa