Hello from Texas :)

[Alysia]

Hi Kristina
I am sorry for you, for all the tough time you are going through the beginning it the toughest.
but now you are not alone with this WG roller coaster anymore. we are all with you.
welcome to our weggie family
I can tell that I would not survive without my weggie family here. no way.
the friends here ARE the best wg-experts on the globe, they are also caring and can comfort you and make you laugh untill you forget your troubles and feel so proud to belong here. like I do

[Kristina]

Hi Everyone... Thanks for all the support and well wishes. It really means a lot. Just knowing there is someone else to talk with that understands is such a comfort. My appointment went pretty good.. I do like my dr. he is very forth coming and has the best bedside manners. We are waiting on test results not sure why it is taking so long. He upped my steroids to 80mg a day and discussed our plan of action if I'm active. Which is either another round of RTX or Cytoxan. Fingers crossed. My kids are doing pretty good. (smiles) my oldest went to the plate... she took real good care of her momma, bathing, helping me get dressed, playing nurse taking care of my pic line... everything, she is awesome. It was real scary in the beginning for them but they seem better since I'm up and moving again and able to care for myself. On another note, excited at the moment about going to get fitted for hearing aids next month.. praying that it helps.. the hardest part is not hearing my kiddos... my middle ears are toast, dr. told me I would have to wear tubes in them for the rest of my life... so much for swimming... lol but that I have hearing at the bone so the hearing aids should help me... fingers crossed...
Curious for anyone to give a little insight on how long it took for their Weg's to go into remission and how long it held? What this really means to my life? How hard is it to work with this, when our immune system is knocked out? Should I try and file for disability? Just trying to understand the full impact this really has on our lives... Any all advice is welcome...

[Dirty Don]

Been in a medical remission for 2 years, shook pred for a month, back on but weaning again. Till pred is gone, docs won't consider mtx reduction...I'ma working on it! Not sure what it means to anyone's life...it has become my life now. Life is pretty normal with AI down in terms of things I can do, attempt, or not. Risk of infection should and will be a constant concern as the WGs never goes away at this point in research/protocols. Yes, do file for disability if you can get it...your current work will be affected by at least 6 mos after dx and drug protocols. Some get back faster, some never do. I'm not sure any of us or our docs understand the disease - some are well educated, many of us are coping well from what we learn from our docs and on here and other support systems. Best advice I offer is to keep it slow and easy, do the best you can, get the best you can, and keep at it...best to you.

[annekat]

Welcome, Kristina,

Everyone has said it all, but I'm just really glad you found us! This forum has been the greatest possible comfort and source of information and support since I joined it nearly 3 years ago, shortly after my diagnosis. I feel I would really be in the dark without it. I hope you will come here often and read and respond to our posts and start your own threads with any questions or concerns you may have, as well as sharing anything you'd like whether WG related or not.

How long it takes to get into remission varies greatly with the individual. A lot may depend on the amount of stress in your life, which is one of the worst things for our disease but unavoidable by many. Just be easy on yourself, get the rest you need and help from family members, eat right, get exercise if and when you can, etc. I may be close to a medicated remission after 3 years, though no one has said so. Others manage it sooner, and some never seem to totally reach that point.

A lot of what you've been through sounds very familiar to me. The hearing loss and collapsed nose, and the hard to treat sinus infections. My nose is less collapsed than yours but it was weird how I suddenly noticed it and none of the docs had mentioned it, so I don't even know when it happened. One doc did ask me if I had used drugs. That bothered me. I'm very sorry that yours is as extreme as it is and I hope you might have a chance for reconstructive surgery some day.

Anyway, do not hesitate to post anytime, there is always someone up somewhere in the world on this forum!

[woz]

Hi kristina, welcome to ''club weg'' There is some excellent reading here (I have read most of the posts twice), the more you know, the better you feel. I have had wegs, for just over a year, 4 months on heavy meds, tapering down to a maintenance dose, since September 2013, I had ear, eye, nose, lungs, kidney, and muscular/joint pain, fevers, migraines and who knows what else. I am currently on 150mg azathiaprine, daily. I am currently having a few issues at the moment, hopefully it is just a storm in a teacup. I am extremely lucky, to be where I am now, my doctors still laugh, when I see them, they cant believe I am, where I am now. So It is possible to get into remission quickly, for some, I hope you are one of those people, Good luck.

Regards woz.....