ear issue/ inflammation...what should i do?

[sheasheasmom]

I am looking for advice from you wise folks. My wegeners hit my ears mainly and caused hearing and minor lung damage before diagnosis. In last almost 2 years I have been on high dose of pred and methotrexate and started rituxin in October and my liver numbers took my meth taper away and went cold turkey. My "good" ear has felt full since holidays but I couldn't get in w ear doc until last week. In meantime I saw rheumy and had blood work. Today I learned my inflammation is "up" I finally see ear Dr tomorrow after he cancelled on me...I don't think he will know what to do. Could this mean I need to go up on pred? At 5 and finally losing a few pounds. Or could this mean I need criticism at 4 months instead of 6? After feeling pretty good all of my joints hurt and that hasn't happened before. Thank you.

Susan diagnosed March 2012

[annekat]

It seems to me your rheumy should be the one to know what to do, if the increased inflammation is caused by Wegs. The ear doc can tell you what is going on in your ear, whether it is full of fluid, infected, or what, and if there is anything he can do to relieve that. But if your joints are all hurting, your ear is full, and your inflammation is up, it sounds like a bit of a Wegs flare, and increased pred would be in order. Your rheumy should be able to advise you on that and also on whether you should be on another immunosuppressant along with the RTX, which can take awhile to work. Just not MTX, because of your liver numbers.

[Marty B]

I agree, my ENT is very aware of Wagener's so don't worry about that..yours should know if your ears, nose and throat are fine.. Then go back to Rheumy for him to let you know that Retuxan could take at least 6 months to kick in..so you still have awile.. I'm in 60 MG's of prednisone and just started Retuxan for Wagener's in my lungs.. I have the same problems with my ears.. Mine are clear but they get a foggy feeling that I've learned to live with for now.. Prednisone did help a little..
Hang in there..

[Yvonnea]

My ENT put little plastic tubes in my ears to drain the fluid that builds up. This really helped for a while, even stopped the ringing. Didn't go up on the pred. as Rhumie said I was not flaring. Unfortunately, I think they have fallen out since, so may have to do it again soon. Good luck.

[Mel4]

The ear ringing is borderline unbearable!!! Is that Fro, fluid? I take Benadryl at night to get some relief. Any other suggestions? I'm getting 2nd rituxin treatment as I type!


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[annekat]

The ear ringing is borderline unbearable!!! Is that Fro, fluid? I take Benadryl at night to get some relief. Any other suggestions? I'm getting 2nd rituxin treatment as I type!


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From what I've heard, the ear ringing can be from lots of different things, probably including fluid. Mine comes and goes. In one ear it is from nerve damage, and it is a constant hiss, though it is covered up by outside noise when I'm wearing my hearing aid. In the other ear, the ear drum is missing, it can get infected more like swimmer's ear, and wax and other gunk can build up there trying to block the opening. Last night it was a terrible roaring, and this morning it is a lot better. The hearing is bad in that ear and the noise is there with or without the aid. I need to get the ear cleaned regularly at my ENT.

If benadryl helps, that is good. What you might try in the daytime, if you can tolerate it, is pseudoephedrine (Sudafed). The standard dose of 60mg. in the morning and then again 4-6 hours later can help open up the ears and eustachian tubes and allow any fluid to drain better. You might need to be persistent with this for a few days or more to start noticing a lot of difference. If you can't tolerate that stuff (I couldn't for years but have gotten used to it) you could try phenylephrine or a non-drowsy antihistamine such as Zyrtec or Allegra. The antihistamine and the decongestants do different things, but anything that helps helps! A little more prednisone could help, too.

[Mel4]

I thought about more pred...i feel like if I say to my dr he will tell me to do it. I feel like Im getting worse with the coughing....sputum...such a word!! But I have been really struggling with the weight and I want to blame pred... I know I, supposed to expect up to 6 months for rituxin to take effect. But blah!!!


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[annekat]

I thought about more pred...i feel like if I say to my dr he will tell me to do it. I feel like Im getting worse with the coughing....sputum...such a word!! But I have been really struggling with the weight and I want to blame pred... I know I, supposed to expect up to 6 months for rituxin to take effect. But blah!!!


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I'm getting the feeling some people are prescribed an additional, faster-acting immunosuppressant while taking Rituxan. I don't know how common this is. But if you might be having a flare while waiting for RTX to kick in, it would make sense to me; otherwise, it would have to be more pred, which of course acts faster than any of the immunosuppressants.

[marta]

I am looking for advice from you wise folks. My wegeners hit my ears mainly and caused hearing and minor lung damage before diagnosis. In last almost 2 years I have been on high dose of pred and methotrexate and started rituxin in October and my liver numbers took my meth taper away and went cold turkey. My "good" ear has felt full since holidays but I couldn't get in w ear doc until last week. In meantime I saw rheumy and had blood work. Today I learned my inflammation is "up" I finally see ear Dr tomorrow after he cancelled on me...I don't think he will know what to do. Could this mean I need to go up on pred? At 5 and finally losing a few pounds. Or could this mean I need criticism at 4 months instead of 6? After feeling pretty good all of my joints hurt and that hasn't happened before. Thank you.

Susan diagnosed March 2012

Hi Susan,

Sorry you're dealing with this crap, but I'll share my experience as the ears were my first symptom, and five years later, they still don't work like they did before all this started.

I've had the tubes three times, they take between 6 months to a year to come out, and while they're in it's a strange-ish universe. I found that the quality of sound changed so drastically and unpredictably when I had the tubes that I prefer not hearing well consistently than having a conversation go from normal to quiet to loud for no reason. I also didn't like that I couldn't go swimming without ear plugs when we were on holidays. It is good to get the tubes put in though because they prevent infection.

This is how my ENT described the whole ear scene with WG to me. (He missed the proper diagnosis before I got one and was going to him for help, so he's gotten very amicable and kind and likes to explain everything now - he's trying to make up for the fail at the beginning of our relationship ) The Eustachian tube, when healthy, has an opening of no more than about 2mm. If there's any inflammation in the sinuses (the size of blood vessels WG attacks) then it doesn't take much for them to shut down completely. He said it's like the canary in the coal mine. Once it's closed, it creates a vacuum in the inner and middle ear (between the Eustachian tubes and your eardrum) and this vacuum ends up sucking fluid from adjoining cells thereby filling that inner chamber with fluid that has no place to escape. The longer it sits there, the more glue like it becomes and harder to remove. The tubes are put in to help drainage and prevent infection as well as hopefully improving the sound quality (and although it does, it also adds a bunch of other sounds that mess with reality.)

You might not be flaring. You might just have crappy residual issues from the primary disease activity. I don't think things will ever get back to 'perfect' but they can be awesome despite that. RTX takes pretty quick to work, I think from my own personal experience it was a lot quicker than CTX. It certainly no longer than a few weeks at most - or it was for me, and many of the people who were dealing with it the same time as I was.

You could also be feeling this way from your pred wean. You say you're at 5mg. What was your last dose and when did you go down? I have found that the symptoms are quite similar between a flu, pred wean too fast, and a flare... it takes a few years to tell the difference between them but you do end up starting to see a difference in the minute details of how the symptoms feel. When you're weaning the low doses, that's when things can get nasty. Not only do we want off the pred as quick as possible but the amount we drop ends up being a higher percentage of the whole we are taking before the drop. Does that make sense?

So when you're on 60mg and you drop 10mg you're dropping 17% but when you're at 7.5mg and you drop 2.5mg to get to 5mg, you're actually dropping 33% at once. I know of docs who tell patients to drop from 10mg to 5mg and then to 0mg. That is wrong and bad and should never be followed for WG as it can lead to a flare. I've seen it happen here before. A good way to see if your symptoms are due to the pred wean, is go back to the last dose you were at and stay there until you feel ok, then drop a smaller amount and see if you feel the same thing. It might save you going back to square one and will give you a better sense of why you're feeling your symptoms - wean, flare, flu...(good for future issues.) It might save you from tubes in your ear. BUT if you get tubes in your ears, and then your Eustachian tubes open up, then you have the coolest parlour trick out there - you can whistle through your ears. I loved that part. Showing people that Wegener's can be funny too.

Best of luck, and here's a little something I wrote yesterday 11 Chronic Illness (Autoimmune Disease) Survival Tips | Find The Common Thread Foundation hopefully it can give you some tip that might help in this crazy journey.

[mrtmeo]

Anyone try Eustachian tube ballooning?
https://www.youtube.com/watch?v=NroBHiC_x2w