New Weggie, with paralyzed vocal cords

[Debbie C]

Hi Russell and like Pete said " WOW " . First I am glad you found this website but sorry for the fact that you had to. I have never heard of this effecting someones vocal cords like yours. Also like Pete said rtx takes awhile to get the full effect,I would definately ask them about ctx ( cytoxin ) that is what many of us had started out on and maybe even give you a higher dose of pred for the inflamation.I hope you start to feel some results soon.

[im so blessed]

Hi Russel! I have a tracheal stenosis that my ENT calls very odd for wegeners. Then again everything with wegeners is odd But mine is in the folds of my vocal chords so when i have a flare i lose my voice. I did not experience paralysis tho. I have heard of the option of injecting the sight with steroids...havnt had to do that myself. Curious if you have a good team of doctors? I think the others are right that rituxan is good but doesnt work fast enough for what youre dealing with. Hope you find some help on here! Im sure you will. These people are all so nice

[Russell Bro]

Debra,
thank you, for the reinforcement and second opinion. I am so ready to eat by mouth. while I was at UCLA I was craving fruit smoothies I ordered a NutriBullet blender, so far it works great for my friends and family. some day I will get to enjoy it.

[renidrag]

Why are you not getting treatments for another six months?
Dale

[Russell Bro]

Dale
That the schedule I was given, but when I talk to my rhumy in 3 weeks I will question it. they claim my last 4 treatments are still in my system and working.
I'm ready for my vocal cords to return to normal.

[renidrag]

Prednisone alone is not enough.
Dale

[Debbie C]

Prednisone alone is not enough.
Dale

This really scares me when people say this,since I have been on only pred for about 4 years. I keep waiting for the bomb to drop.

[Pete]

This really scares me when people say this,since I have been on only pred for about 4 years. I keep waiting for the bomb to drop.

I think the key point here is that pred alone is not enough to induce remission. For some folks, it's probably adequate for maintenance...

[mrtmeo]

Ouch Russell,
What a battle.
Are you using high protein shakes in your feeding tube?
We have to have a certain amount of protein to support our muscle and organs or our body will take from these.
There is a protein powder I used for my mom when she was unable to eat enuf and almost needed a feeding tube.
It is called Bariatric Fusion and you only need 4-6 oz of fluid to mix it and provides 27 grams of protein.
It is used for those who had bariatric surgery.

[Debbie C]

Debra,
thank you, for the reinforcement and second opinion. I am so ready to eat by mouth. while I was at UCLA I was craving fruit smoothies I ordered a NutriBullet blender, so far it works great for my friends and family. some day I will get to enjoy it.

I also bought a Nutribullet but heard bad reviews about the gasket coming off and the blades breaking so I took it back and got a Ninja but I end up using by old blender that I have had for years. I love smoothies too and have 1 every morning. Hope you get to enjoy them soon.