New to site

[seashells]

I am a mom a 2 wonderful children and a wife of almost 22years. I was diagnosed with wegeners 2years ago. It is primarily in my upper respiratory and sinuses. I have 2nodules in my lung and have trach stenosis. Had surgery in September to stretch it and felt great. Now I am issues with breathing again and have developed a cough that won't go away. I am on prednisone and methotrexate. Anybody have any suggestions ? I have to go see Dr Monday before specialists will see me to make sure its not just a virus but I know its not.

[im so blessed]

Hi Seashells, I have a tracheal stenosis. I was dxed with wgs 14 years ago,altho the stenosis didnt appear until 4 years ago. I only had 1 surgery. But 2 flares since treated with pred. Im suprised ur stenosis would be acting up while on pred. Do you have a doc who is familiar with wegs ? I am considering trying rituxan. I know others on here with this problem have had great success with rituxan. If u put tracheal stenosis in the search bar you will find threads on this. Hope this helps. Good luck!

[annekat]

I am a mom a 2 wonderful children and a wife of almost 22years. I was diagnosed with wegeners 2years ago. It is primarily in my upper respiratory and sinuses. I have 2nodules in my lung and have trach stenosis. Had surgery in September to stretch it and felt great. Now I am issues with breathing again and have developed a cough that won't go away. I am on prednisone and methotrexate. Anybody have any suggestions ? I have to go see Dr Monday before specialists will see me to make sure its not just a virus but I know its not.

Welcome, seashells. I love your username! My WG has been in the same areas as yours, except that I don't have tracheal stenosis. I know there can be breathing and coughing issues without the stenosis, as I've had them, and they are due to mucus draining from the sinuses and getting down into the bronchii where it is sometimes hard to cough up. With stenosis, though, I think you cannot be too careful, and I would make sure that has not worsened again since the surgery, or that you are not flaring. I think you know your body better than anyone and if you don't think it is a virus, it probably isn't. It's good you are seeing your doc on Monday and i hope that results in a visit to your WG specialists. Good luck, and I'm glad you found this great forum and hope you will be a regular on here! Let us know what happens.

[mishb]

Hi Seashells and welcome.

You will find a wonderful bunch of people on here 24/7
You will find someone willing to help with any questions you may have.

I don't have stenosis issues, but it sounds like your WG is trying to raise his head again.
Hopefully your specialists can get things back under control again, quickly.

[MaxD]

seashells: You will get lots of warm wishes on this board from fellow travelers on this tough journey. I started with ear problems, Bell's palsy, joint pains, and lung nodules. 7 months after treatment with Rituxan I am now in remission. I would strongly urge you to see vasculitis specialists at one of the research and treatment institutions (see www.vasulitisfoundation.org), especially for tracheal stenosis. Ours is a rare condition and most doctors are not trained in the latest evolving diagnosis and treatment methods. All the best to you and your family.

[Pete]

Hi Seashells,

Welcome to the forum. As MaxD has said, we hope you get a referral that will allow you to see a wegs specialist. I don't know where you are in Illinois, but you should be in reasonable driving/flying distance from either Mayo Clinic or Cleveland Clinic. Hope your local docs stay on top of this and you get the treatment you need.

Good luck and better health!!

[seashells]

Thanks for all of the responses. I am at the southern most part of Illinois. I upped my steroid last night cause my breathing was not good. Slightly better today so I'm gonna keep it with the upped dose til I see Dr on Monday. Hopefully rheumatologist will see me soon. I see my ent in April.

[spiritscript]

Hi seashells!

Do you see a pulmonologist? Mine has me on Qvar and Dulera. I also have a lung nodule and something about "glass???" I don't know what that means. I've had bronchitis over the years so bad that even sitting up I would cough like crazy. I was on Methotrexate for 2 months. I can't take it. TERRIBLE fatigue and nausea. My rheumatologist wants me on Arava, but I don't want to!

I am a mom a 2 wonderful children and a wife of almost 22years. I was diagnosed with wegeners 2years ago. It is primarily in my upper respiratory and sinuses. I have 2nodules in my lung and have trach stenosis. Had surgery in September to stretch it and felt great. Now I am issues with breathing again and have developed a cough that won't go away. I am on prednisone and methotrexate. Anybody have any suggestions ? I have to go see Dr Monday before specialists will see me to make sure its not just a virus but I know its not.

[seashells]

I'm not currently seeing a pulmonologist. I go see my ent in St Louis on Thursday. I saw my regular MD today and we were both frustrated with my rheumy. She gave me some antibiotics cause as usual my nose is nasty and cough pearls to see if they would help. I am so tired and hurt all over. Thanks for all the response.

[annekat]

I'm not currently seeing a pulmonologist. I go see my ent in St Louis on Thursday. I saw my regular MD today and we were both frustrated with my rheumy. She gave me some antibiotics cause as usual my nose is nasty and cough pearls to see if they would help. I am so tired and hurt all over. Thanks for all the response.

Your rheumy should be willing to see you. You might just need an increase in MTX and prednisone. Good you will see ENT this week, he can assess the stenosis and what to do about it if it is causing these symptoms.