Sinus involvement but supposed to be in remission......??

[Yvonnea]

Hi Folks,

12 years on, you would think I would be an expert by now, but no, still have queries....
I am supposed to be in chemical remission for the past four years, on 1,5 mg of prednisone and 100mg Imuran.
Had lung involvement, but now just sinus issues and watery eyes to deal with.
I find I need to use neilmed everyday or my sinuses would be unbearable. Surely I would not have to do this if I was indeed in remission. Or is this just a side effect of previous Wegeners involvement. My most recent blood just showed slight inflammation but nothing new there.
Is is something that you just have to live with?

Thanks
Yvonne

[me2]

Unfortunately sinus problems are a common problem that does not go away even with successful treatment. In 37 years I have never been without sinus issues. They have been at their best during times of heavy duty treatment for other wg problems but I have never really been free of the need for Neilmed rinse. Its another one of the mysteries of the disease.

[Yvonnea]

Thanks for replying....I was getting worried that WG was up to it's old tricks again. Good to know that it is just the new "normal".

[MikeG-2012]

Or is this just a side effect of previous Wegeners involvement. My most recent blood just showed slight inflammation but nothing new there.
Is is something that you just have to live with?

If it's a new symptom, it might still be worth having someone look at, just in case...

[Alias]

The way I think of it is that there is a range of symptoms that constitutes the "new normal" of drug remission. I am never symptom free, but the symptoms are either due to permanent damage done to my sinuses and ears, or to side effects of treatment, and not due to active disease. On good days the symptoms can be easy to ignore, but on bad days they can be very annoying/distracting to almost incapacitating. I've learned not to get freaked out by these fluctuations, since the labs tell a story of being basically stable. I just stay vigilant for anything unusual or outside that familiar range.

[drz]

Hi Folks,

12 years on, you would think I would be an expert by now, but no, still have queries....
I am supposed to be in chemical remission for the past four years, on 1,5 mg of prednisone and 100mg Imuran.
Had lung involvement, but now just sinus issues and watery eyes to deal with.
I find I need to use neilmed everyday or my sinuses would be unbearable. Surely I would not have to do this if I was indeed in remission. Or is this just a side effect of previous Wegeners involvement. My most recent blood just showed slight inflammation but nothing new there.
Is is something that you just have to live with?

Thanks
Yvonne

I was told that while I am considered in drug induced remission I will still have residual symptoms that will wax and wane,especially when stressed by things like illness and infection. But unless I need to change to stronger meds like RTX, I am still considered in remission. Some times when the nasal rinses are very bloody and my joints sore and I feel very fatigue, it feels to me like I am starting flare, but these periods generally resolve without needing any big med changes. Some times I need an antibiotic or a nasal steroid to calm things down and a lot of sinus rinses at times when they are infected. But the Weg experts consider this a normal part of residual effects of having Wegs and not a serious flare. They will however increased monitoring with extra lab work and appointments some times to be sure it doesn't evolve into a big flare.