New to the Club

[njd56]

What a great relief to find a site that has so much information about WG based on personal experiences! I was just diagnosed a few weeks ago and it is good to get all the tips and info found here.

Question, does anyone have any experience with hearing loss associated with WG? I have had no hearing in my right ear for five months and limited hearing in my left. If so, was wondering if the meds were able to restore any or all of hearing loss in other people. Docs say maybe, maybe not.

Thanks!

[andrew]

Welcome to the forum, I'm glad you joined up!

It wouldn't surprise me to learn that it was related to WG. So many patients are affected in their sinuses it stands to reason that hearing would be affected in many cases. As for whether it will come back or not, every one is different so it will be a waiting game to see what happens. I assume you're taking Prednisone? That's probably the best thing to be taking along with Cytoxan.

[jola57]

I got sick in nov 2006 with what they tought polymyalgia rheumatica and was on very low dose 5mg than 15 and finaly 25 of pred and finaly I was diagnosed with WG in november of 2007 after a neural (left side of foot) biopsy - how time flies. I lost most hearing in my left ear last year and had only 75% loss and right ear 35%, since april of this year I have permanent ringing - tinitus in right ear. I was on cyclophosphamide from december 2007 to June and had only 2 weeks of remission and back on cyclo (procytox) since sept 22 and pred 60mg for who knows how long.
Hope this helps

[Rodger]

I was diagnosed in Sept 2006 with primarily sinus symptoms. I have just had my first real flare up, signaled by fluid in my ears and now pretty constant tinnitus. I had to have tubes put in to address the fluid and stop infection. I see my back up ENT, who has more direct WG experience, in December. I'm hoping for some better news then.

[jola57]

Hi Rodger, were you able to fly with the tubes? or did your dr. tell you not to.
Jola

[Rodger]

Jola, I haven't had to fly since the tubes went in, but my ENT has not cautioned me against it. I actually had to face a flight from Washington to Hawaii for business and pleasure just as the fluid started showing up. At the time my ENT drained the affected ear, and prescribed an antibiotic and cipro drops. She also had me use my standard flying cocktail: a dose of Sudafed 2 hours before takeoff and a dose of of Afrin nasal spray one hour before landing, to help your ears equalize the pressure.

My next flight isn't until January so I'll be able to consult before hand.

[jola57]

Hi Rodger, I'm flying in December so I will let you know how it went. Thanks, I will get Sudafed and Afrin and try as you did. A bit scared but looking forward to my first vacation in over 2 years!!!! I do not appear to have an infection but I will be seeing a new ENT in the next couple of weeks because the tinitus is not letting up since April, I guess I will just have to live with it. Cheers

[Gwenllian]

About a week ago, I was sitting down one evening watching tv, when I had the most excruciating pain in my left ear - like a stabbing pain. After a few hours, the pain started to subside and a clear fluid started coming out. It was still painful, but I lost my hearing and it hasn't come back since.
I went to my GP, who put me on loads of antibiotics (didn't work), so my rheumatologist sent me back to ENT to have a look. I saw him today, and he's wonderful and knows me well because he helps me maintain my tracheal stenosis.
He said there was fluid trapped on the other side of my ear drum, and that it was consistent with Wegeners. My CRP is 25, my white cell count is 3 (has dropped, but I always have trouble with neutropenia with my WG), and i'm anemic.
ENT said that the best treatment was steroids, even in the case of someone who did not have WG.

I thought there would have been some kind of surgery ENT could do to drain the fluid?

I have miserable tinatus, and I can barely make out conversation. I had a hearing test, and ENT was suprised at how much hearing i've lost. I also had a sort of 'blowing' test on my ear drum, which showed it was unresponsive.

If steroids don't work, will i never get my hearing back? I can't imagine living my life like that.

I feel really ill generally, and had a bad chest. I'm seeing Rheum again tomorrow to start some IV steroid. Hope it works

[Rodger]

I saw my secondary ENT at Georgetown Medical School on Monday. He believes my ear drainage is consistent with WG as well. He order lab cultures and put me on 10 days of Cipro and Cipro drops just in case. If there is no infection, he plans to advise my rheumy to up my prednisone and possibly Cytoxan as well.

If you ENT didn't confirm is sounds as if your eardrum ruptured. That happened to me before they put in the tubes. (Although my pain threshold is now so high, I didn't really feel it.) tubes will help with the pressure and drainage.

I haven't had my hearing tested yet, but anticipate some loss as well. I see the rheumy Wednesday. I hope my ANCA, and CRP are down.

[Rodger]

No new infection, but my blood work wasn't good either. My rheumy tripled my pred to 30 mg every other day and boosted my Cytoxan by another 25 mg. It was disappointing news, but know I'm still look witht he level of my symptoms and permanent damage thus far. Here's hoping the ears clear up and we can taper the meds again soon.

Rodger