Sinus problems...Here we go again!

[Mel]

I was wondering how many people have ongoing sinus problems as a result of the wegener's. I was mostly affected in my lungs and sinuses and have had sinus problems in the past year and a half since diagnosis. It seems that I keep getting sinus infections and my doctor said this will probably happen for a long time. I am home from work today because I am completely blocked up. I don't know if I can take any antibiotics because I am on low dose septra while I am coming off all my meds. I am just waiting to hear from my doctor. I also don't know if I need something like sinus surgery. Has anyone had this done? Does anyone have any other suggestion? Thanks so much!

[pberggren1]

Mel, have you tried the Nielmed sinus rinse that you can get at your local pharmacy? This works quite well at getting the chunks out. Surgery should always be a last resort or a life saving operation because any surgery, especially on the nose and sinuses, can trigger Wegs to come out of remission.

[Jack]

Mel - to clear your sinuses you should try irrigation if you do not already use it. I think that most people on the forum with sinus issues do this. However, my experience is that my sinus problems were associated with active Wegener's and as soon as I received effective treatment they got better. This was following horrendous problems and multiple pointless surgery culminating in the removal of my sinus linings. You really don't want to go there!

The other thing that may help is a prophylactic antibiotic such as Bactrim. This should help combat some of the infection problems and worked for me.

[JanW]

I'm in Jack's camp and the fact that you say that you are 'coming off your meds' and starting to have these issues are ringing all kind of alarm bells for me. It may not be infection at all, but rather active wegs that is causing your issues.

One of the very persistent problems that I see on these forums is that doctors not actually figuring out that remission (and therefore removal of meds) really mean that symptoms are largely gone vs. "oh, you'll always have sinus problems if you have WG." If you WG is well controlled, you should be like Jack -- they will get better.

[elephant]

Mel, I had four sinus surgerie all but one worked. Sounds to me your wegeners is active. I am kinda going through the same thing, I blow my nose five times a day...I rinse my nose twice a day with Neil Med. I think the doc and I will discuss about increasing my cellcept this week.
I think this is confusing to the docs because it's just the sinuses that are bothering me...nothing else.

[Jack]

It is difficult not to jump to conclusions based upon your own experience, but Wegener's has a tendency not to follow any rules. Just because in my own case sinus trouble indicates active Wegener's this may well not be true for others. It could be that there is physical damage that is causing the problem.

An example of this is my permanent cough in spite of showing no disease activity, this is due to lung damage, but in others it warns that trouble is brewing.

[Sangye]

Mel, I agree with the above. Recurring sinus infections are the main way a Wegs diagnosis is missed in the first place. I don't think it's a coincidence that it's happening just as you're lowering your meds. I believe active disease always has to be ruled out first whenever symptoms appear or worsen, especially those that were there at dx.

[Mel]

I am having a blood test later this week so we will see what the results are. My blood work and the rest of the symptoms have been good for a long time. I don't feel as though I am having a flare, but I could be wrong. I actually had an MRI on my brain and sinuses done a few months ago because I was having so many headaches. It showed damage to my sinuses, most probably caused by the disease. I don't want to have this problem forever, so I need to figure out how to help myself. I always rinse with Neilmed, and I do find it helps. I also just got a prescription for Nasonex, which is supposed to help also. I will see how I feel tomorrow. Thanks so much for all of the suggestions!