Sinuses affected - nose dripping like CRAZY!

[TOBEY32]

Have you experienced this?
Just in the last couple of weeks. A little bit of "gunk" too, but that's not as bothersome as this never ending nose dripping. Nothing has changed regarding my meds. I did go down to 10mg Pred from 20mg(?).
Thinking of restarting my Nettie Pot (nose irrigation) which I haven't used since before all this (february). Was thinking of visiting the ENT, but not sure why: I know it's due to Weg's so how can he help me?
Thanks much - David

[elephant]

You need to talk to your Rhuemy and also see if your ENT can scope up your nose and see any changes, like swollen sinuses or inflammation.

[TOBEY32]

Because I don't have insurance, I don't have a Rheumy yet. Even if the ENT "scopes" what can be done?

[elephant]

I am sorry to hear that. I have severe sinus damage/issues and the ENT checks to see if I have crusting or inflammation and will culture with a q-tip to see if I have an infection. Its always a battle. You need to see a Rhuemy, who is seeing you?

[vdub]

Have you been dx'ed with WG? Sounds like it is a possibility because you have a script for pred, but I had pred before being dx'ed, so not sure. The constant nose dripping is exactly what I went through.

My memory is really going down the toilet, but without looking up my history (which I have had to write down because I forget), I believe my ENT put me through 2 or 3 surgeries on my nose before I was dx'ed with wegs. I was only dx'ed because of other conditions that were impossible to ignore.

The only reason I make that point is because you need to cut to the chase and avoid any expense you don't absolutely need. I don't think I would go to an ENT who also can do a surgery. My experience has been that they are all to ready to cure whatever ailment you have with a slice of the scalpal.

If you have been dx'ed with wegs, I believe your symptoms would indicate that you are not in remission. If you haven't been dx'ed and you have already been through a bunch of antibiotics for a sinus infection, then "it's a possibility" that you could have wegs, but there are so many other factors and so many other things it could be.

So, in your case, it's kind of a bang for the buck situation. Most of the people on this forum will tell you to go see a specialist (there are 5 in the US), but in your case you would be adding the travel on top of the medical expense. Are you saying you don't have any insurance? Not even catastrophic insurance that would at least reduce the amount the hospital charges? Wegs can run into a lot of money, but even having catastrophic insurance will bring the hospital bill down to a managable contracted amount.

Please give a little more information, but just remember that none of us are doctors. We are only drawing on our own experiences and our knowledge might be limited. We can't recommend a medical regimen, but can tell you what happend in our own situations and maybe you can draw some value from that.

[TOBEY32]

I thought "crusting" was just DRY nose gunk? I've had the dry, but right now my nose seems pretty moist.
I see a lung doc and a kidney doc, neither of whom I feel comfortable making "the" doc for me.
Yes, I have been dx'ed w/ Weg's (02/11).
Does anyone see a problem in beginning again with my Nettie Pot? Maybe I should plan to see the ENT first.
Many thanks,
David

[Pmarsh]

Hi David. My ENT got me on the NetiPot after I was diagnosed. I use it twice a day with 25ml of Pulimicort (cortico-steroid) mixed in. It's been very helpful.

Cheers.

[elephant]

Using the Netti pot is fine. I used it before I was diagnosed, so it is safe.

[vdub]

If you have been dx'ed with WG, then I think you need to be getting medical attention from a doctor that, if not a specialist, is at least very familiar with this disease. You need medical advice that goes far beyond what you can get on this forum.

[TOBEY32]

I understand using sinus rinses is very safe, I just wasn't so sure when my sinuses are "flaring". Has anyone continued w/ sinus rinsing while having flare-ups?
Yes, I know the advise I might get here should be secondary to a doc's. A visit or phone call to the ENT would be a good thing...

[Sangye]

A neti pot is safe for anyone unless you have extreme loss of cartilage and/or bone in your nasal passages that would allow water to pour into your brain. :wink1:

[pberggren1]

A neti pot is safe for anyone unless you have extreme loss of cartilage and/or bone in your nasal passages that would allow water to pour into your brain. :wink1:

I know some people that will certainly not have that problem.

[maria garcia]

Hoq were you diagnosed with Wegs? Was it by a biopsy? And if it was positive you were not put on a immune suppresant?

[Stephanie78]

I know some people that will certainly not have that problem.

That was TOO funny! I have to agree :biggrin1:

[drz]

I understand using sinus rinses is very safe, I just wasn't so sure when my sinuses are "flaring". Has anyone continued w/ sinus rinsing while having flare-ups?
Yes, I know the advise I might get here should be secondary to a doc's. A visit or phone call to the ENT would be a good thing...

Yes, during my last flare I had to really rinse more often at least double or triple the number of rinses to try keep up with the blood clots coming out. Really gross but necessary to keep breathing through your nose. It is also easier on the body than trying to cough them up later.

[drz]

Yes, during my last flare I had to really rinse more often at least double or triple the number of rinses to try keep up with the blood clots coming out. Really gross but necessary to keep breathing through your nose. It is also easier on the body than trying to cough them up later.

I also found it helpful to have an ENT suck out my sinuses to get out some of the crap and then keep rinsing often.

[pberggren1]

I also found it helpful to have an ENT suck out my sinuses to get out some of the crap and then keep rinsing often.

drz, exactly how did your ENT suck out stuff from your sinuses. Did he have to do any cutting? Was it all endoscopic? Which sinus cavities did he go into? I find this interesting.