The scariest 14 months of my life and then Wegeners

Quote:

---

Originally Posted by mikecaven

This recent flare, per my Rheumatologist, is indeed Wegeners. But he has referred me to lung doctor who believes I also have severe sinusitis. She sent me for CTscan of lungs and sinuses. The CTscan shows severe sinusitis throughout sinuses with extreme blockages caused by polyps. She referred me to a Rhinologist ENT who said I had to have surgery to prevent breathing and future infections. So next Friday I will have this surgery. Hopeful that this will solve some problems Also on antibiotics for over two weeks and have been on Prednisone and recently had two Rituxin infusions. Today I feel great. Sharing this so you guys might consider CTscan of sinuses. I was shocked how much blockage could be so clearly seen throughout my head. I had two similar surgeries in early 1980’s. But new technologies/mini cameras are now helpful to make this surgery easier. Much of this sinus problem has been cause by WG. FYI: I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT. CT scan is imperative. I have had WG for 37 years! I am now 71.

---

This is all familiar!You're right, CT scan of the sinuses is very important. Both my son & myself have had severe sinus disease (CT scans, MRI's, etc.) and persistent rhinitis. Must say we've avoided surgery of any kind like the plague due to strong bias against the efficacy in our disease. Although we've had severe chest pain, lung symptoms & cough so far they haven't picked up significant changes (except for nodules, ground glass infiltrates, and mild fibrosis!) as we've already been treated with 20 years of immune suppressants. You've had WG for a very long time! Let us know how you fare with your upcoming surgery.

Sent from my iPhone using Tapatalk

[QUOTE=mikecaven;I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT.[/QUOTE]

I agree this desirable if You can find one. i recently had to see my local ENT about the frequent nosebleeds I had with my last flare. He considered himself an expert on Wegener's because he saw a patient with it once thirty five years ago and he was certain I didn't have any nosebleeds problem from GPA. He advised me not to use the Flonase since he said that it would make it worse. In the past my GPA treating doctors have recommended it so I went with their advice and ignored his advice to put Vaseline in my nose. The steroid spray seemed to help and the nosebleeds decreased till I went on the triple pred dosage booster. The local ENT doctor did some good for me in that he looked up my nose and didn't see holes or erosion in my septum or signs of developing saddle nose. But we have to recognize the limitations of our treating doctors even when they don't. It is our foremost responsibility to take good care of our body.

Mike, you said it! I consider myself blessed to have a top notch ENT. He is a surgeon who has performed many saddle back surgeries. I do not want one, but I would have the surgery you are having. All surgery is invasive, but I think from the sounds of it, you will get sinus relief. Mini cameras...remember those sinus surgeries when our noses were packed for a week. If it wasn’t for my current ENT I wouldn’t even know I have Wegeners. He recognized I had an autoimmune disease, ran tests for 28 different autoimmune diseases and called me at home the night the results came in. He was honest enough to say he thought I had Lupus and then this turned up. He got me into a Rheumatologist immediately.
Sending prayers to you. Keep us posted.
Masha