Newbie

[Poppy64]

Hi, my name is Marilyn and I am from Boston. I was diagnosed with tracheal stenosis officially on September 6th. Feeling very overwhelmed and scared. So glad I found this site.

Here's my story.
Was diagnosed 30+ years ago with asthma. Everyone called me Darth Vader. Started seeing a new doctor a couple of years ago after my other one retired. A couple of months ago I went in because I couldn't walk 5 steps without feeling like I was going to die. After 2 months of prednisone she sent me to pulminologist. He immediately sent me for chest X-rays and a cat scan. When the results are in he sent me to Mass General for a second opinion. The next week was my first bronchoscopy. She inflated with the balloon going from 1cm to 8 (next one is October 18th). Also my bronchial tubes. The next week she set me up with the Vasculitis specialist and that is when I was diagnosed. I had my first Rituxim infusion last wee. Next one is October 9th. Am down to 100 mg of cyclophosphamide, 20mg of prednisone, bacterium, omprazole, 2 inhalers and singular.oh, also just started the brittle bone pill. My hands and shoulders are achy, waking up at 2:00 every night and can't go back to sleep. Have a perscription for ambian but don't want to take it - have to get up with my daughter in the morning and then go to work. Memory has not been too great and I've been a little emotional. On the plus side, I can walk up stairs without feeling like I am going to pass out and no one calls me Darth Vader!

I have a couple of questions and I feel like I should know the answers but I don't. When I go for my next Rituxim infusion what should I ask my doctor? What blood tests should I be concerned about? What do I need to know to help me understand what is going on? Everything happened so fast that my head is spinning.

Thanks for taking the time to read this. Now I have something to do at 2:00 am!

[annekat]

Welcome to the forum, Marilyn! Yes, now you have something to do at 2:00AM. The members here are all over the world, so there will always be someone up reading the forum.

Your WG scenario is not just like mine, although I have had asthma in my life.... my WG is mostly sinus related and I did have some fairly brief lung involvement which was cleared up with cyclophosphamide and the other standard meds taken with it. Now on methotrexate and doing a lot better. I can relate to the whirlwind aspect of it. It doesn't happen that fast with everyone, though. Each case is a little different and some are a lot different! I'm sorry you ended up with tracheal stenosis; I've been lucky enough to avoid that but there others on here who have it.

Others can better answer your questions about RTX and the blood tests. But I just wanted to congratulate you on finding the best possible resource for a person with WG. The people on here are first class, and you will get your questions answered, learn from others' experiences, get support and friendship, and feel a lot less alone with this disease. Without this forum, I would be lost.

[Pete]

Welcome to the forum, Marilyn. You'll find lots of support and good info here. As for blood tests to be concerned about, my docs look at C-reactive protein (for inflammation); urinalysis and creatinine serum (for kidney involvement). They also look for trends in sedimentation rate and red and white blood cell counts. Along with the blood tests, you need to be attentive to how you feel (better, worse, or no change from last report). Your test results are numbers. How you feel and respond to treatment are key.

I also have asthma, but without tracheal stenosis. GPA aggravated it. I take 10 mg/day of Singulair for it. I discontinued Asmanex last week. I'll see how often I need my rescue inhaler to control symptoms. So far, I haven't needed it, and this is the peak of my allergy season.

Good luck and better health.

[drz]

Ask you doctor for his assessment of your case, what you need to be on the look out for, and what you should do if various things develop. Ask him or her to explain your diagnosis and treatment plan so you can understand it. Or at least have a friend with you that can help do this cause we aren't likely to hear or remember everything they tell us. I always get copies of all my lab work too so I can show them to next doctor I see and I ask them to mail a copy of their report to my internist and the most important other specialists I will see next if they are at a different clinic.

[SpaceflightAddict]

Welcome to the forums!

Sounds like you are in the same place I am right now... newly diagnosed and scared and confused.

The great people here have already in the short time ive been here answered a lot of my questions and reassured me.

This place and the people are great. Ask questions; tell us how you feel; and most importantly keep a smile on your face. It's easier to smile than frown :cool1:

-SpaceflightAddict

[pberggren1]

Hi Marylin,

There is a thread in there somewhere titled What new patients need to know. Just search for it.

I'm curious which is your main Wegs doc now at Mass General?

Most basic tests are WBC, ESR, CRP, ANCA, Creatinine and quite a few more.

[Alysia]

Hi Marilyn,
welcome. If you have to have WG, at least you can join this amazing weggie family.
being Darth Vader can help you deal with this wg-monster.
we already have Batman around...
rtx is great. but is takes 8 weeks at least untill it start working.
good luck and continue to write, it is very helpful !

[gilders]

Welcome Marilyn!
I think your few questions have been answered.
As your newly diagnosed I guess the only thing I can add is that no 2 cases are alike. That's why this forum is great. You'll soon learn that just because something is or isn't happening to you, or your treatment is different. It doesn't mean something is wrong or you'll definitely pick up other problems that others suffer with, your WG is personal to you, but there are running themes that we can help advise you with.

Don't forget we're a friendly bunch, so if you want to chat about non-WG issues there's sections for that too!:biggrin1:

[Poppy64]

Hi Phil, my doctor is John Niles. Him and his crew have been great.

[pberggren1]

I have heard good things about John. You are in good hands.

[annekat]

Hi Phil, my doctor is John Niles. Him and his crew have been great. I think I know Dr. John Niles from childhood. I did some research on him once. I think he is originally from Portland, OR. He probably wouldn't remember me, he was a couple grades behind me in school, but his dad and mine were both at the U of Oregon Med School. His sister is my age. IF it is the same John Niles, and if not, I apologize. It has no bearing on anything here, really, just interesting. I'd like to live somewhere where I'd have access to as good a doctor as he sounds like he is.

[pberggren1]

I this this is the same John Niles Anne.

[Poppy64]

Thanks everyone for listening. My husband and I have a 16 year old daughter with Down syndrome who is totally dependent on us. I've learned many things from her - determination is one of them. I'm not going to let this get me down

[pberggren1]

We are here for you Poppy. We will not let you down. What is so important is that you have a great doc already and a good team. So now we don't have to hound you to find a Wegs Expert......lol

[annekat]

I this this is the same John Niles Anne. I think it probably is, Phil, too. If I remember my research correctly, I think he may have gone to med school in Portland, and I remember hearing that his sister is also a doctor and graduated from Harvard Med School. His dad was in the Pathology Dept. along with my dad at U of OR. He comes from quite a family of achievers.

[annekat]

Thanks everyone for listening. My husband and I have a 16 year old daughter with Down syndrome who is totally dependent on us. I've learned many things from her - determination is one of them. I'm not going to let this get me down I'm sure you will not let this get you down, Poppy. You have a lot to look forward to once your Wegs is under control. You will be able to be there for your daughter.