Methotrexate

[Brooke]

Did anybody just start taking only methotrexate and prednisone for limited wegener's disease and not take the cyclophosphamide or any other medication first?
How did you respond? How long did it take to start working?
My doctors do not think I need to be on anything other than methotrexate, prednisone, pholic acid, and bactrim right now.
I do not have any joint involvement. Just very bad sinus problems, saddle nose deformity (now fixed), subglottic stenosis, not very good lung function, and narrowing of airway.
They may be able to fix the narrowing of the airway once I get better. But since I am so scarred there now, they don't want to fix it right now. May make scarring worse.
I feel I have wheezing, but it seems more upper chest area rather than in my lungs.
Also, for those of you with ear involvement, how do they know that is from Wegener's? Do they do ct scan, look in ears, hearing test???? My hearing seems fine but I have a buzzing sound all the time.

[Brooke]

Also, does getting any little infection, for example, a cold - make your wegeners worse?

[Maestra]

I was able to avoid cyclophosphamide as well. I started on prednisone for about a month and then was put on cellcept with the pred. I was diagnosed 3 years ago next week, and have been lucky enough to miss out on cyclophosphamide. My WGs has been in control, with one minor flare up about 6 months afterward diagnosis.

I, however, only have involvement in the kidneys. I have had very little nasal involvement.

[Maestra]

Also, does getting any little infection, for example, a cold - make your wegeners worse?

I have been on cellcept (currently 1500 mg a day) for almost 3 years. 60 mg of pred for 6 months after diagnosis. I am a school teacher, therefore exposed to a lot of infections. I have had many colds, believed to have H1N1 last spring, strep, infentigo plus a spider bite at the same time, all the fun kids stuff and they have not caused flare ups. It does take me longer to recover.

[Brooke]

Thanks, that gives me a little hope that hopefully the methotrexate and prednisone will work!
I am glad you have been better!! Good news to hear.

[moyan]

Hi Brooke, lost most of the hearing in one ear, docs found nothing, but when hearing suddenly came back after 1 ½ years, I knew that too was Wegener.

[deb]

Hi Brooke, I was diagnosed June, 2008. I started with Methotrexate, Pred. and bactrim. I have had 2 flares since then. Both brought on by exposure to sick family members. It took me 6 months to recover while my husband was fine in 10 days. We upped the Methotrexate once and I think it is all he can give in one shot. It caps the worse symptoms but I am not sure it is containing well enough. My sed rate is slowly but steadily increasing. I think he will move me to ritux once it hits 20 or when I get another flare. I do feel pretty good and it seemed to work better before the flares. After each flare my medication seems to affect me somewhat differently. Hope that helps. Have a wonderful Christmas!

[Jack]

Strange how we all react differently to medication. I had regular flare ups on Neoral but none at all after switching to Myfortic. If anyone is having difficulty gaining remission or having flare ups, I would recommend trying one of the alternative drugs.

[elephant]

The doctors didn't want me on cytoxan because of my kidney transplant so they are hoping the cellcept, cyclosporine, prednisone and bactrim will keep it quiet. The Imuran didn't work for me, had drug reaction and got worse. So I am hoping this mix of meds will keep the WG quiet!! SHHHH....

[katwoman]

Strange how we all react differently to medication. I had regular flare ups on Neoral but none at all after switching to Myfortic. If anyone is having difficulty gaining remission or having flare ups, I would recommend trying one of the alternative drugs.

Speaking of reacting differently to medication, I have noticed that since I have been on Methotrexate and Pred (nearly four weeks) my nose bleeds are now becoming a daily occurrence with the worst so far today they have been bleeding on and off since I first sat up this morning...anyone got any idea why??