WG in remission

[ticklytoes]

i go back to the ent on jan 27th. we (the rheumy and me) are trying the taper again...its time to taper to 7mg, but im not until next month bc she wants me to start giving myself mtx injections for this month to see if they may work better since they are better absorbed. i will go do bloodwork at the end of the month to see if there is any extra improvement. if so, we will trudge forward with the tapering :/ wish me luck!

[Sangye]

I so hope the mtx injections work great and that you can start tapering the pred soon after!

[pberggren1]

Ticklytoes, what did you mean by webbing in your trach?

[moyan]

Hi, when first diagnosed I went for bloodwork every week. When kidneys seemed somewhat stable I started going only once/month. Doc is fine with that.

[ticklytoes]

well, my ent at vandy called it webbing, but basically its just where the tissue of my airway was inflammed to the point where it was only open 5mm wide...the size of a straw. not sure why they used that term...it looked kinda like "webs" when i saw the pic...blood vessels were inflammed and running thru the tissue. its much better now...going back on jan 27th to talk to the ent again. maybe hes ready to take the trach out by then...everyone pray and keep fingers and toes crossed!

[elephant]

I have my finges and toes crossed for you ticklytoes. I will pray for you too. Ticklytoes, I have been weaning myself so carefully off prednisone. Actually I am on Prednisone 6 mg and decided to stay on that for one more month. Once I go to Prednisone 5mg, I plan on staying there for 6 months. Just don't want to start a flare. I really don't have any side effects from the Prednisone right now, because its a low dose. Good luck to you again Ticklytoes.

[Sangye]

Good luck, Ticklytoes. I really hope that it works out to remove the trach soon. I remember when Lisa (Coffeelover) got hers out last year, she said she couldn't stop talking for days.

[Doug]

Tickleytoes- It's sounding good for you, and I definitely will "web" my fingers and toes together on the hope that it will get that trach out!

[coffeelover]

Ticklytoes.
My trach too was in because of less than a straw width for air to pass through and I have been trach free now for 7 months. Almost as long as I had the trach in. I wish that your news is good. I wish it so much for you! I have refused any cosmetic surgery regarding the area where the trach was becuase It helps keep me grounded and reminds me to take care of myself.
I know when you've had a trach in they are not as quick to lower that pred dose,,,,so that is my next goal.
I am hoping, wishing and dreaming that your news is a trach free area. Sangye is right....I couldnt shut up after getting mine out! I also took my trip to Colorado as my "trach out" trip so it became a continual celebration and one that I wish for you
Keep us informed
coffeelover

[ticklytoes]

Hi guys...so disappointed bc they called and rescheduled my ent visit until feb 24th! Now i have to wait another whole month. I was soooo excited to see what he was gonna say, but everyone keeps telling me that it was just God's timing, and somehow, I believe it. Now, I feel SUPER confident when I go at the end of feb, he will be more likely to discuss my trach removal. thanks for the thoughts and prayers...keep it up please! I need all I can get ! praying for you guys too... Nicole