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I had similar problems as Pete did, with the ears being first to be affected by Wegener's. That was followed by 2.5 years of supposed sinus...

5 days in after Ruxience infusion and so far, so good. Sugars are through the roof (expected) and need control but no side effects seen. Fingers...

Answer to your first question is yes. The answer to your second question is beyond my body of knowledge. Good luck!!

Thank you for the info. I have another ENT appointment next week. Want to be able to ask intelligent questions. :scared:

It helped me by masking the tinnitus with other normal sounds. i was told that much of my tinnitus was the result of the brain creating some...

BAHA=bone anchored hearing aid Rush Limbaugh wore them.

What is a BAHA? Is that something that will make your ringing noise go away?

Thank you sharing Pete. So losing some of your hearing was a direct cause of Wegeners? So whatever hearing loss I have now, it won't come back...

yes, isn’t it strange and wonderful how this disease can appear in soooooo many different ways? Just makes me weep with joy at the variety of life. ...

Very true. Before Rituxan cam along I was on Cytoxan 40 years ago. After two years I was declared in remission and then was drug free for 20 years. ...

I think the infusions are the best to contain it and for maintenance (twice a year). I was able to get off all medications and was like that for 4...

I would like to understand this as well. I had 4 RTX infusions at the end of the year and was able to get off the prednisone completely following...

I use a BAHA on side that lost hearing and balance mechanism and a BTE model on other side that has some hearing but no middle ear mechanism. I have...

Thanks for your input. It never occurred to me that the immunosuppressive drugs could also be part of it. Every day something new is messing with...

Skin irritation (along with joint pain) was one of my first symptoms. I had angry red rashes come up over my torso and upper arms, itchy as hell and...

Hearing has been my most pronounced ongoing GPA issue. Before disease onset, I had tinnitus (high pitch squeal) and some hearing loss due to...

The journal is a great suggestion. It doesn't need to be elaborate either just brief notes help a lot later when memory starts to fade on how things...

Rae, I agree with drz. Keep at it and don't give up. Try different doctors or clinics if you are not getting anywhere. Hopefully it's not...

drz, How did your hearing loss come about? Asking because all the ear problems I'm starting to have. How did it start and progress? -Jeannette

Thanks. It helps to know what your experience its. It was hard for me to learn the patience. I had been through Cytoxan so many times I kind of had...

Hi Anne, Hey, I forgot all about PDT- thanks for the reminder. I'm not much in touch with normal life these days so the reminders are good. ...

My experience was similar, it took about about 6 weeks to kick in for me . Be patient. It's going to work. But you need to set your expectations...

Hi, Kirk, Thanks for the reply. I'm not sure what LPR is but can find out. In any case, the book and diet you mentioned sound very helpful if they...

Hey Anne, I just took a look and I still have the Fast Tract book. I don't need it - can I drop it off at your house some time when I'm headed to...

Just drinking a small amount of water with a little baking soda mixed in helps me with that coughing and burning in the esophagus. It mainly happens...

Hello everyone. Just out of curiosity, does mild decreased kidney function cause dry itchy skin?? That started yesterday but I thought it was from...

Just Google Rituxan patient assistance. It is their reimbersment program. My clinic uses Rituxan that they already have in supply for me and then...

That's good to know. My insurance only approved the Ruxience this time around. It must be cheaper. If it's just as effective, I don't really care...

Me too. My insurance (BCBS) did not approve Rituxan/Rituximab for my infusion. Instead they are making me take Ruxience biosimilar. I would be...