Wegener's Granulomatosis Support Group

My husband has WG. and has trouble with his eyes and just wondering if anyone else has this problem. Its like the gunge in his head tries to come out of his eyes. Its not really bad but just there. He also feels his eye sight has deteriorated.

He is having a MRI scan on his ears next week as his hearing in his left ear is not as good as the right.

All his readings are all doing really well. Just finished a months supply of Cyclophosphamide in the hope that it will clear up this gunge in his head but it hasn't helped.

Would like to hear if anyone else has this problem.

Shakti-

Before I knew I had wegeners I had eyes problems. They would be sore to the touch and blood shot. They ended up putting me on steriods and I was also on methotrexate. I sure hope that the Cyclophosphamide works and that his eyes get better.

Thanks for your reply. He feels better then he did. Cyclophosphamide made him tired.

All his results say he is in remission but one consultant doesn't just take this to mean everything is ok. However, the last consultant we saw told us that because his results said he was ok it was ENT trouble and not Wegeners. This has really annoyed me and I am hoping that when we next have an appointment we see the other consultant, the one we trust. He still has gunge that effects his nose and ears. His eyes are worse first thing in the morning.

Appreciated your reply.

I also have hearing loss in my left ear. Sometimes it pops and I think it's finally going to clear up, but no. I always complain about it, but am learning to live with it.

My eyes have also changed. I deal with an ongoing bout of scleriatis which makes my eyes look bloodshot, the right eye is clear but the left struggles. I know my eye sight has changed, but I have always worn glasses so it was not a biggie for me. I did not have problems with my hearing or eye infections until WG.

I am in remission according to doctors, but I have small issues here and there and I know they are WG related. I did 6 mos. of cytoxen, and am now on a small dose of immuran, off all other drugs.

-bree

My dad has WG and his vision comes and goes. I am going to make an eye drs appt... See if it is just his vision changing because of age (82 yrs old) or the WG.

I have been lucky. I just went to eye doctor for a regular appt. My eye doctor said my eyes look good. He even went to say to my sister he will probably retire before my eyes change. I know I get more headaches now then I did before I even was diagnosed with WG.