I'm New - Limited Wegener's Disease

[Brooke]

I sure hope the methotrexate works. I have not had any joint pain or skin problems ever. So I don't know if that makes a difference as far as how the medication will work?
I use a vics steamer at night which seems to help keep things "loosened" up in my nose and chest, so I don't have to cough so hard in the morning.
Does anybody else have a chronic cough? Mine is mostly at night and in the morning.

[Sangye]

I had a chronic dry cough for most of the past 3-1/2 yrs. It's gone now, even though my lungs are still not so great. It'll probably go away as your treatment takes effect.

[Brooke]

Thanks, I hope the cough goes away. I also have flem stuff in my chest/upper airway that I hope goes away. Sometimes I cough so hard I feel like my eyeballs are going to pop out.
The sinus rinses do help, I get a bunch of crusting/chunks out everyday.
I will be getting another ct scan, lung test, and see my pulmonologist at the end of January.

[pberggren1]

This is for Brooke and snooz23:

I am curious if either of you know anyone by the last name of Van Boening.

It's just that I am an avid pool player and one of the best in the world is Shane Van Boening from Sioux Falls.

Over and Out,
Phil of the north

[Brooke]

I have not heard of him. I am not a pool player though! haha.

[snooz23]

I have not heard of him either...however I have not lived in the SD area for 20+ years. I go home for visits each year but that is about all.

Suzanne

[DuaneHart]

Thank you. I live in Sioux Falls, South Dakota USA. I have seen a pulmonologist at Mayo Clinic in Minnesota, I don't know that she is a Wegener's Specialist or not but I know she does have more than just one patient with Wegener's Disease.
I use an albuterol nebulizer and am on another inhaler, symbicort.

I live in Rochester and sounds like your symtoms and mine are very much alike. I also take Symbicort and Albuterol and Fluticasone nasal spray. Prednisone is down to 20mg daily and I take Mtx once a week. I hate the mtx and the pred. I'm always tired for about 4 days after I take it. I've had blood pressure med changed so they said that should help. At last count I have 24 different meds that I take daily. Pred has caused a HUGE weight gain and am hoping that I can start getting that off. My drs at Mayo have all been very good--cardiologist, pulmonologist, rhuematologist and my internal med doctor all work together and conult with each other since I have so many medical issues. Hang in there--it WILL get better, at least thats what I keep telling myself!

[Brooke]

You hang in there too! Sounds like a lot of medication. I too have gained about 20 pounds from that darn prednisone.
What pulmonologist do you see at Mayo clinic? I have seen Dr. Karina Keogh.
Is there a weg specialist there?

[elephant]

It will get better. It's the journey we have to take and sometimes we get a flat tire and have to ask for help or admit we need to call the doctor. With all the medicines you take there are going to be side effects which is a challenge in itself. Once your/our WG gets into a "remission" or we start to feel better the medicine will be reduced. I tell myself one day at a time, baby steps, then toddler steps, I will skip the teenage steps.

[Suzanne Patzer]

Hi Brooke,

You post came up when I did a search for wegener's and columbus, ohio. Do you live in Columbus? I live here and so does my second cousin, who was just diagnosed with Wegener's. She is in a lot of pain and I believe her doctor told her she only had a year to live. I am very concerned about this. I wondered if you could tell me who your doctor is, and maybe she can get a second opinion.

Thanks,
Suzanne