WG with Pituitary Involvement

[vdub]

Disease began around May 2008 and was finally diagnosed in Apr 2010. Let me know if I am wrong, but I believe that WG/Pit is significantly different than WG/Vasculitis, at least with respect to treatment.

I would particularly like to talk to WG's with pit involvement and have already sent a note to Jennifer, however, discussing the disease with other organ involvement will undoubtedly open my eyes to what I can expect in the future.

I am panhypopit, which means the pituitary has been completely destroyed and since the pit controls thyroid, the adrenal, testicals, hypothalmus, etc, etc, a number of glands have also headed south.

So, I guess my first question for you folks is this..... I'm on so many drugs, with so many side effects that I feel pretty crappy most all the time. Is this as good as it ges?

[chrisTIn@]

..I believe that WG/Pit is significantly different than WG/Vasculitis, at least with respect to treatment.

You sure have a complicated situation!
Wegener's Granulomatosis allways implicates vasculitis, says my doc. When I read your story, I think your pituary's bloodvessels were affected with WG, that's why it was damaged.
I can understand that is 't complicatated to treat!

Hope you can find some answers on this site, that can help you to be your own 'health-advocate', and 'disease-manager'.
With kind regards,

Another 'Weggie'.

[chrisTIn@]

I found this when I googled 'pituary'.
I didn't know that this gland is so small (0,5 cm),
and is located right behind the nose-brigde...

Home - Welcome | Pituitary Network Association

Wonder if there are more people with pituary-involvement...
Good luck, vdub!

[Jack]

I have never come across this before, but looking now at the pituitary's location it would seem logical that it might become involved in all the sinus and nasal problems.

What medications are you on vdub and at what doses? The Wegener's journey is a very long one so your condition and medication will undoubtedly change as time goes by and probably for the better!

[elephant]

Wegeners can attack any organ. But the Wegeners really like the Lungs, Kidneys and Sinuses....but it sometimes gets bored and moves to another organ.

[Sangye]

Vdub, Wegs is Wegs, no matter where it affects you. The difference is in severity of involvement and which tissues are currently involved. Wegs in the central nervous system is quite serious for obvious reasons. They use the same drugs but you might have to take some of the stronger ones (eg cytoxan/ctx) longer.

Some Weggies only have sinus involvement. Not easy to live with if it's severe, but they can be treated with the milder drugs. Others might have severe lung involvement (eg alveolar hemorrhage) or kidney involvement and require strong drugs to get it under control. It's all over the map.