Hearing Loss/Hearing Aides

[elephant]

That is great news for AJ! Gives all of us hope!

[Jack]

I have tried on several occasions to get below 10, but always have problems so have given up. The last time, I got down to 7mg over a period of 3 months, but the fluid in my ears increased to the stage where I was having regular ear aches. When, I went back to 10mg, this reduced back to a slight feeling of pressure in the ear and some deafness. I think a bigger dose might even improve this, but I suffer enough pred side effects already.

[renidrag]

Jack: If I may ask . What are the symptoms of ear involvement? Right now I have a high pitched hum, as best as I can describe it. I have not seen and ENT yet. ( I was supposed to but decided to have a pulmonary embolism instead.) It doesn't seem to last all day and comes and goes. Is this something I should have checked? Also I did have my eye pressure checked and it is high also. Barely out of range. thanks,
Dale

[Jack]

I think that it affects each of us in a slightly different way as with most things Wegener's related! In my case, I have a lot of tinnitus (whistle and hum noises), a slight feeling of pressure and loss of hearing. However, I am sometimes able to clear the hearing by holding my nose and blowing to make my ears pop. It does not work every time and only lasts for a very short time, but confirms that the nerves are still in reasonable condition. I know that others have hearing problems due to nerve damage.

A few weeks ago, I was due to have surgery to fit grommets in order to relieve the pressure. I did not have much faith in them working, but as it turned out, I failed the pre-operative assessment due to all my health problems. I'm now being referred to have hearing aids.

I have not had problems with my eyes other than them being very blood-shot during a flare. Like something from a horror movie!

[elephant]

I have ringing in my ears for over 30 years! Went to a bunch of doctors and it they blamed it on the medicine ( cyclosporine) and other medicines. I really think it is related to our good old friend WG. Jack, I'm suprised that your doctors havn't order the veramyst or a steriod spray for your nose.

[Jack]

I don't have any problems with my nose anymore, it is my eustation tubes that are playing up. In any case, I would avoid nasal sprays where possible. I had lots of problems with symptom rebound when I used them in the past and ended up worse than when I started.

[Doug]

Jeriorleans ~ Good news indeed! That should be encouraging to AJ, too. Is he doing better on accepting medication as a necessity? Future plans: How's the college business looking for him?

[jeriorleans]

No, A.J. still hasn't accepted the medicine. When the doctor told him he was going to have to take the methotrexate for 2 years, he was shocked. Can't worry about college just yet!! He is currently trying to get into a high school here but competition is tough. (you can't go to public school in Louisiana, they are horrible).