I start treatment for WG on Wednesday

[whatthewhat]

Hey jj, welcome!
i used to volunteer at a camp for kids with cf, back when they had camps for kids with cf!
My daughter has WG, I do not.
Her rtx takes much longer than 6 hours. Her day at the infusion center starts when they open and finishes when they close (first in, last out, like the marines I think!) and can run as long as 10 hours, all told. It seems they run pediatrics more slowly than adults in general.
Best of wishes to you. I personally think Rtx is as close to a miracle drug as you can get with this disease.

[jjwestside]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.

[Alysia]

Welcome to the forum JJ. Once you are on rtx ask to regularly check your Igg levels in your blood tests to make sure that you can fight infections. If it gets too low, dont worry, there is a treatment, some weggies get Ivig. I know at least 4 friends who get it.

[Hal]

I would suggest that you should listen to your body. If it says "I am tired" then absolutely rest and nap and do not feel guilty about it. Boring can be a good thing for us.

[MikeG-2012]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.

I have fun with the staff. In about 5 minutes, I will have completed my 14th RTX infusion. Yea INSURANCE!! So by now they know me and my personality and that I enjoy having fun. So they play long nicely.

I also take my noteboook computer along so I can anxiously await any new posts to the wegs-list.

[Jaha]

JJ,
Welcome to the #1 forum for our kind. I'm am glad that all went well with your infusion. It is a long day and as you get to know the staff it will get more interesting, sometimes you run into a fellow Wegeners person. I wish you all the best with you treatments. I wonder if because you are on Mobic, if that's a why you are on a lower dose of preds?

[pfries]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.

Welcome to the forum JJ. Once you are on rtx ask to regularly check your Igg levels in your blood tests to make sure that you can fight infections. If it gets too low, dont worry, there is a treatment, some weggies get Ivig. I know at least 4 friends who get it.

I am currently doing a Cytoxin regimen and IvIg was added after the second round as my numbers dropped.
I tend to schedule my infusions as early as I can in the morning and go to bed late the night before so I can nap