Different Medication?

**Brooke** · 01-23-2010, 02:25 AM

I wrote on a different thread yesterday about my dr. appt. Wouldn't upping my pred help with the inflammation in my sinuses? My doc is keeping me on 20 mg but said my sinuses looked bad, he said they always have. He wants to wait a little longer for the methotrexate to start working, I have been on methotrexate for about 2 months though. Also, my ct of my chest looks great but when listening to me he says it doesn't sound the best but he thinks its more upper wheeze sounding.
Any thoughts?

**Sangye** · 01-23-2010, 02:42 AM

Brooke, it's not a good idea to increase the pred unless necessary. The immunosuppressant is the main engine that gets the Wegs under control. Pred is secondary and mostly helps keep inflammation down enough for the main drug to work. (Pred is also an immunosuppressant, but that quality isn't as strong)

I have a sneaking suspicion that the mtx isn't strong enough for you. Are you noticing any improvements in symptoms? Are the sinuses bad but better?

**Brooke** · 01-23-2010, 02:53 AM

Thank you Sangye - I am feeling a little better since I have started, definately not where I probably should be. I noticed one day I ran up the stairs and I was breathing really well. I used to be out of breath a lot more. I forgot to ask how my sinus ct compared to last time. I will have to call the office and ask. When I speak, I sound plugged up. Like I have a sinus infection, this started a week or two ago so thats why I thought I had an infection or something. I was coughing up green stuff and a lot of green gunk was coming out of my nose. I was put on a z pak and upped my steroid a bit and that did help. So I think I did have one. Hmmmm I don't know.

**Jack** · 01-23-2010, 03:37 AM

Have you stopped producing the green colour stuff yet? If not, it could be a sign that you need an alternative antibiotic. I have about three regular ones I use to get rid of chest infections and very often one will work when the others don't.

**elephant** · 01-23-2010, 03:49 AM

I agree with Jack and Sangye. You want to rule out infection first, then if the stuffiness is there and no infection then you are still active. With any of these immunosuppressant drugs ( methotrexate, cellcept, imuran, cyclosporine,...ect) it is a wait and see if it works for you. I had to do two trial and errors since my WG diagnosis July 2008. So don't be surprised if methotrexate doesn't work for you. Do a daily log and write down how you feel and what hurts. I did this for 6 months when they switch me from imuran to cellcept. I wrote the date and time for every pill I took and how I felt. I had too really, I was put back on 60 mg prednisone and was on so many pills it was ridiculous! I was also afraid I would forget a pill or take too much. Yikes!

**Brooke** · 01-23-2010, 03:57 AM

Thank you for the replies. Yes, I have stopped producing the green stuff. I am still stuffy sounding, my breathing through my nose is clear but I sound like I have a cold. I have been writing a daily log of how I have been feeling. I will see the pulmonologist in 3 months and he said call sooner if needed and he can get me in right away. I suppose I will give the methotrexate more time and see how it works. thanks again

**elephant** · 01-23-2010, 04:01 AM

Brooke hope I'm not nagging too much, it's my nature. Once your WG is in remission, I would go to a ENT who specializes in WG and get your sinus cleaned out. I am wondering if your CT scan showed it all over or one particular area. I had four Maxillary surgerie in the last 18 months or so. The last one helped so much. But it is best to wait till your in remission.

**JanW** · 01-23-2010, 04:16 AM

Brooke -- An upper wheezing sound? Don't you have stenosis? If so, that could be where the weeze is coming from if the lungs look clear. If I'm remembering correctly you said that you were in a wait and see mode with that.

In my experience with my pulmo (who will now be my ex-pulmo), she really didn't understand anything about stenosis that occured above the tracheal..that's really in the ENT's area.

**Brooke** · 01-23-2010, 05:11 AM

Elephant - I had 2 sinus surgeries in 2008 and one in 2009 to correct my saddle nose. So I think my sinuses are cleaned out, or at least they were.

Jan- I do have stenosis. I don't think my narrowing is "real" narrow. I think it's open enough right now to leave it. They say once I am in remission they could do surgery if they/I think I need it but for now, they don't want to cause more scarring.