Hearing & Eye Involvement?

[txrepub4God]

I'm curious how many of you have hearing and/or eye involvement with your WG. I am a fairly new diagnosee (March 2015), & have had degenerative hearing loss for at least 1 year. I just saw an ENT, who sent me to get hearing tests. The tests showed hearing loss in both ears, & the ENT recommended hearing aids. I'm also having issues with my eyes, lots of watering (tears just pour down my face on the right side), sudden blurriness, severe itching, waking up with my eyes sealed shut with drainage, and spots in my vision that float past several times a day. These "floaters" have been there for years, but getting worse.

Just curious if anyone else had these issues with WG. I've been on Cytoxan, prednisone, & Bactrim for the WG for about 6 weeks now. I actually don't feel ANY better on these meds, & actually feel alittle worse. I'm sure the Cytoxan isn't a happy med to deal with on a daily basis, though. Thanks for any info!

Teri

[Pete]

Hi Teri,

Wegs clobbered a bit more of my hearing in both ears. (I'd already lost about 30% in my right ear and about 10% in my left thanks to military experience before ear plugs were used and working in noisy environments.) The right ear was affected more as I had an ear infection at wegs onset that required two eardrum lancings and several rounds of antibiotics to clear up. I compare my unaided hearing to a stereo that only has midrange frequency capability. I use hearing aids to give me woofer and tweeter sound. Hearing aids are an option, but they are expensive, and most medical plans don't cover them (don't get me started on a rant about this) - however, you can deduct the cost of the aids and ongoing battery purchases on your income tax (assuming you meet the threshold for medical expenses).

As for your eyes, please see an ophthalmologist ASAP. You may have a plugged tear duct that's causing the excessive tearing. They can insert a tube in your tear duct so that your eye will drain normally. As for the floaters, you may have something else going on. About a year after I got wegs, I had a vitreous detachment in my right eye. It seemed as if I had paint on my eye as I had black streaks in my field of vision. I tried to rinse it away, but no go. I had an emergency laser procedure to correct it, and I've had no problems since.

I don't know your medication dosages, but I'm guessing that you're on at least 100 mg/day of cytoxan, 60 mg/day of prednisone, and bactrim 3x a week. The cytoxan can be very hard on your stomach and bladder. You'll need to stay well-hydrated and urinate whenever you feel the urge. The metabolites of cytoxan are hard on the bladder and bladder cancer is a listed side effect of cytoxan. I have a "cast iron" stomach, so cytoxan didn't bother me, even though I took it on an empty stomach. You shouldn't be on it for more than 4-6 months as it will also affect your bone marrow. If you have too much trouble with cytoxan, perhaps your doc will change you to either immuran, methotrexate, or cellcept. Rituximab infusions are another possibility, but they are very expensive and you'll need to get your insurer to approve before you get this treatment.

Prednisone is the drug we love to hate. It generally calms the inflammation that goes with wegs, but it also can make you jumpy, can increase your appetite dramatically leading to weight gain and Cushing's syndrome (buffalo hump). Once the disease is under control, your doc should start you tapering off prednisone. A slow taper is better as withdrawal can provide its own set of nasty symptoms. I'm down to 5 mg/day now. I've gotten off it once (about two years ago for about two months) and got down to 2 mg a month or so ago, but went back up to 5 mg/day because some symptoms were starting to reappear.

Some people don't deal well with sulfa based antibiotics such as bactrim. It's given as a prophylactic against the form of pneumonia common in immunosuppressed/immunodeficient people. I'm not sure what your doc would prescribe as an alternative.

This disease presents in very subtle ways, both at onset and when relapsing/flaring. If you feel odd/sick or have odd/new symptoms, you would be wise to call your doc.

Hope this helps...

[drz]

Wegs can cause blindness and hearing loss. I had scleritis and loss of hearing and balance from my Wegs. Pred messes up your vision too and and can cause cataracts too.

[JimmyJames]

Upon initial onset of WG I experienced almost complete hearing loss in both ears. My hearing improved after starting prednisone to about 80% in my left ear and 65% in my right. Over the course of the next few years my hearing kept dropping slightly over time. Last August I purchased hearing aids and was absolutely amazed at how much my hearing had declined. My hearing aids connect directly to my iPhone which makes taking and receiving phone call very easy. An added benefit to the aids is you can control the hearing aids with an app and the hearing aids work as wireless headphones. If your hearing is effected to the point where hearing aids will help, I would say you should consider it. I wish I would have gotten my hearing aids long before I did.

I hope your hearing and eye issues will be corrected soon.

[Alias]

Teri, hearing loss is a fairly common result of this illness, unfortunately. Ear issues were my first major symptom, and I ended up with severe impairment on one side and intermittent eustachian tube dysfunction on the other. Sometimes the loss is nerve related, and sometimes it is conductive. I needed one hearing aid, and my insurance plan did cover it. If I'm with the same plan in the future, it will cover replacements every three years.

[txrepub4God]

Thanks to all that replied. I will contact my insurance company to see if they cover the hearing aids. I have an appointment with the eye doctor in mid-August about my eye issues. Hopefully nothing major is going on there.

[gilders]

Wegs can cause blindness and hearing loss. I had scleritis and loss of hearing and balance from my Wegs. Pred messes up your vision too and and can cause cataracts too.

Agree with what drz wrote.
One more point re:cataracts caused by steroids. The type of cataracts pred can cause is subcapsular (I have the start of these). This type of cataract is deep in the eye and will not be visible to you or other people. Therefore I'd recommend anyone who has been on pred for a few years to get their eyes checked out. The other concern is that this type of cataract isn't one that slowly deteriorates like other cataracts, but can quickly worsen. Signs to look out for are glaringness, e.g. car headlights at night will be even more blinding than what they are to the "average" person. Don't rely on how good your vision is - I apparently have better than 20-20 vision. But struggle with high contrasting images (white writing on black background, such as credits at the end of a film)