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zizzcat
08-02-2013, 08:44 AM
Hi, I'm not able to keep up with the discussions and don't know at this pointnif I have Wegner's but you guys have helped me a lot in the past. I hope you can again.

i found myself texting on my phone to my daughter that it would be better if we texted because I could only whisper. I thought about it from her perspective and suddenly realized how strange that was, to only be able to whisper. I've had so many outrageously bizarre symptoms with this immune illness that I've gotten use to the bizarre.

I've only been able to whisper for a week now. I've had tracheal inflammation for over a year and 1/2, at times spasms as well, and at times my throat feels like it's closing up and I can't breathe. I have 2-5 Halls' cough drops in my mouth at all times to keep my throat anesthesized and to avoid severe coughing fits. My throat is usually congested, but the cough is dry, and airway wheezing below the trachea that had disappeared with increased inhalator dosages is returning.

I see another ENT in a week. The last one will not see me again, and I need to have someone close until I can be seen at a major university medical center.

What are the tests used to diagnose tracheal stenosis. I would like to get a laryngealscopy done and if the bronchial airways get worse, a broncheoscopy.

I am in the process of changing primary care doctors.

I'd appreciate any suggestions.
thanks

Hope

drz
08-02-2013, 11:59 PM
They scoped me to rule it out when I had symptoms suggesting possible stenosis. Mine turned out to irritation and swelling from GERD also related to meds we take for Wegs.

Good luck.

chrisTIn@
08-04-2013, 06:40 PM
I have no experience with broncheoscopy, but my throat has been checked out by my ENT. He could not find anything. Still I sometimes have a slight hoarseness. Good luck with getting an appointment at a major university medical center. I hope they 'll figure out why you can only whisper, and that you 'll be treated properly so that you 'll be able to speak again soon!!

mdjazz01
08-13-2013, 11:54 PM
I have ulcers on my trachea and an uncontrolled cough for a year. I just had my first ritaxan treatment yesterday.

chrisTIn@
08-17-2013, 03:51 AM
I have ulcers on my trachea and an uncontrolled cough for a year. I just had my first ritaxan treatment yesterday.

Welcome here!
Please let us know if the Rituxan treatment went well.
When did you get diagnosed with Wegeners/GPA?

mdjazz01
08-17-2013, 09:28 AM
I tolerated my first rituxan treatment just fine . It was a long 5 hrs. The next day I felt great ! The pressure in my head and face lifted and I was less fatigued. My cough remained the same .... relentless. However, the next day I woke up and all my symptoms were back with a vengeance. It has been 5 days since my treatment and I am sicker than ever. My dr. told me I am crashing from the 60 mg of prednisone, I was also given with the rituxan and that exceptional good day was because the dreaded prednisone was lifting me up. So frustrating.... My dr says I have adrenal insufficiency because of my long-term prednisone use. I am presently on 10mg.
Does any one know if this backlash will occur with each treatment? When does the rituxan start to help with these debilitating symptoms ?

Dirty Don
08-17-2013, 12:44 PM
Generally, these heavy duty treatments take somewhere in the 4 to 6 weeks range to become effective. The pred certainly makes you feel better, but the reason for weaning is because you can crash from it, aside from the long term damages it does. Patience is necessary in the early going...the first 6 months usually. Best to you.

Alysia
08-17-2013, 03:26 PM
When does the rituxan start to help with these debilitating symptoms ?

Hi and welcome.
for me rtx started working after 6 weeks. the improvement came slowly but is amazing. I wrote about it in a thread about 2 months ago.
good luck !