Tulsa,Ok

[Texastatoogal]

Hello, I was just diagnosed. I see my dr this week for the first time since the news. I would appreciate any questions you think I should ask. I have been looking stuff up, but I know that first hand experience is best. Btw, anyone else from my part of the world?

[Dirty Don]

Welcome TTgal...you will have lots of questions and this is the place to find them and even learn more...and good, knowledgeable people! I have lots of questions of you, but your questions first: 1) find out the severity and the areas affected; 2) find out docs' intentions for drugs and dosages; 3) if you have any major organ damage, find out what is being proposed for it; and, 4) while there are a million other questions, find out whether or not your docs are WG experienced or willing to consult with WG experienced docs from elsewhere. That is extremely important. It has been shown, on here too, that docs reading from books intend well, but really do not get WG unless they have experience dealing with it. Best to you, come on at any time as there are worldwide Weggies awake some where!!

[Texastatoogal]

Thank you for the info. What questions do you have?

[Dirty Don]

What were your initial symptoms and where and how long? What are your current symptoms? How's your attitude towards all this being recently dx? Who is your support group aside from us? That's a good start for me! As for the docs, please ask anything of them...and tell them everything, don't hide any, even awkward, events or symptoms. Best to you...let us know about Tuesday!

[Texastatoogal]

I was diagnosed with tracheal stenosis about a year and half ago. they said it was idiopathic. From the facebook groups I knew that wegeners could be a cause of the stenosis. I never looked it up to see what it actually was. 2 weeks ago I started getting some red spots on my stomach and legs. I went to my dr and she sent me to get a biopsy and lab work and chest xray. She called me 4 days later and gave me the news. She said it appears it has not affected my kidneys and lungs. She put me on 80mg of predisone and sent me for more lab work. I am getting ready to see her on Tuesday for the first time. I think I am dealing with it ok, my husband, family and friends have been great. I have two kids, the 16 year old knows the 9 year old not as much. I am not worried about myself as much as I am for my family.

[windchime]

Welcome Texastatoogal,

You've found the right place with supportive members and a wealth of information and experience. It's probably a scary time for you right now and that to shall pass as you gain more insight into the disease process and know what to expect. Medscape has a good article on the dermatological affects of WG's. Here is the link Medscape: Medscape Access (http://emedicine.medscape.com/article/1085290-overview)

How are you doing on the 80mg of prednisone? Are you on a taper with it? One important thing I've learned throughout the years is get copies of your lab work, X-rays and CT scans and start your own file of these. You may find they come in handy some day. Take notes when you go to the doc. You won't remember everything you discussed and it's nice to refer back to them. Someone suggested recording your doc sessions. I actually tried that last time and it worked well. There are several apps for it, but I used Smart Voice which I believe is one of the ones suggested in another thread. Just try it out before you go to the doc to make sure it works ok.

Keep us posted with your progress and definately ask the questions that you need/want answers too.

[annekat]

Welcome to the forum. You have come to the right place! The wealth of experience, knowledge, and caring people on here is immense. You say you are on 80mg. prednisone but I don't see a mention of an immunosuppressant, such as CTX or RTX. Perhaps at your next appointment you will be prescribed one. Tracheal stenosis is a serious WG complication that many of us don't have, but some do. Stick with us and you will get a better understanding of things. And if you are not seeing a real WG specialist, see if your doc can consult with one from this list: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . Best wishes to you for a recovery and remission, and please keep us posted!

[Alysia]

I think I am dealing with it ok, my husband, family and friends have been great. I have two kids, the 16 year old knows the 9 year old not as much. I am not worried about myself as much as I am for my family.

Hi and welcome,
yes, it sounds that you are dealing just great with it.
I remember too that at the onset of my wg, I was more worried about my little son, left at home without me, when I was in the hospital, more then worring about my condition.
with all your family around you and the mutual caring, I am sure you will soon be just fine. good luck and continue to write.

[Texastatoogal]

My dr had said she was going to put me on a immune suppressant, but has not prescribed one. I am seeing her tomorrow and have a lot of questions and information to gather. Thank you everyone, I am trying to learn all I can and still stay sane! I learned from my stenosis diagnosis, that it all becomes very overwhelming.

[annekat]

She is probably waiting to know more about your case before deciding which immune suppressant to put you on. I hope the appointment tomorrow goes well!

[Barbara N]

Hello, I was just diagnosed. I see my dr this week for the first time since the news. I would appreciate any questions you think I should ask. I have been looking stuff up, but I know that first hand experience is best. Btw, anyone else from my part of the world?

My children live in Talequah, that is very near to Tulsa and we come out for visits sometimes and would love to meet you.

[Texastatoogal]

That would be great!