Diagnosed yesterday

[annekat]

Jen,
I don't think you should be too concerned about the new nasal symptoms as long as your doc knows about them. They are very common symptoms among us, and by themselves are considered one of the less severe forms of WG/GPA. Though any of us may get other involvements such as lung and kidney. If the nasal stuff really escalates, and possibly expands into your sinuses and ears, your doc may want to increase or change your medication. You also want to avoid a saddle nose, which I have, that is a collapsed septum. I probably have it because my treatment was delayed for 2.5 years while I was treated instead for recurring sinus and ear infections and allergies. I think most people who get early treatment will avoid a saddle nose.

I felt as you do at first with methotrexate. I did get used to it before too long. But I do split the dose between morning and evening, and I do take folic acid every day, which I think is standard. I've been taking it for about 8 years, and have it monitored in my labs for if it is affecting my liver enzymes. Everyone is different, and you could get off it sooner, and I might even be able to, though it is often considered a med for maintaining remission. No one has suggested that I'm in remission, but I think maybe I am, as I'm doing really well. If I did stop or lower the MTX, I would probably still be on my 5mg of prednisone for awhile or indefinitely. Pred is the hardest thing to taper off of, especially at the lower doses, when one has been on it for many months or years. I think there's a trend toward a shorter time on meds for those with moderate cases.
If you are ever up here visiting family, we might run into each other! I sell my pottery at the Olympia Farmers Market, but right now it is only essentials and no crafters except soap and mask makers. And there are flowers, an essential, I guess. So not sure when I'll be back there. BTW, I will turn 68 this year, but I don't look or act it. So maybe we can meet someday. Take care!

Sent from my MotoE2(4G-LTE) using Tapatalk

[JenPNW]

Hey @annekat, I'll definitely have to check out the Olympia Farmers Market next time I'm up there, maybe I can find you! I'm sorry to hear you have saddle nose, is that something they can repair eventually? Is it uncomfortable? I'm glad to hear you got used to the MTX, I've taken it twice now and felt tired and had a bloated/gurgling/crampy tummy but no nausea. I'm taking the folic acid every morning, I feel like my side effects were less the second time, but maybe that is just wishful thinking.

I think I'm driving my doc crazy with all the questions - I email her every couple of days and she dutifully writes me back the next day. So, she is aware of every little thing happening to me. She thinks the nasal crusting is actually a good sign because some mucous is getting into my nose - instead of all down my throat. Hey, small wins!