Smoldering But Unfortunately not in remission

[wgrebel]

I went to see my VF specialist Monday June 07 & after an analysis of my bloodwork he determined that instead of remission like he thought in April that I am "moving toward remission". He compared my case of WG to a fire. In February he stated it was flames & I was active, now he compares the case to smoldering. He seems to think that three more months of Cytoxan & Prednisone will get me to where I need to be & that with the way I am going a realistic remission can be achieved within one year of my diagnosis date (which was in October 2009). My SED rate is 79 and that alarmed him. My creatinine spiked on May 25 to (2.3) but after an increase in prednisone for a week it went back down to (1.4). My specialist stated that my kidney function responding that well was also a good sign that remission was on the horizon. He did however state that I was ready to come off Coumadin & he is sending my general practicioner a letter to get me off the blood thinner.

It was hard to hear that I was not in remission but I could be much worse. I am thankful I am responding to the meds and the WG was caught soon enough in my case that it did not do more damage. Keep me in your prayers as I will all of Ya'll. We may not know each other face to face but we are all one big WG family. I tend to forget how blessed I have been that my case of WG did not do more than it did. God has been good to me.

WGREBEL in Mississippi

[Sangye]

TIm, it's great that you're moving in the right direction. I use the analogy of a wildfire for Wegs, too. Smoldering Wegs is very difficult-- that's what I had for 2.5 years but none of my docs agreed with me that it was smoldering. They attributed symptoms to damage from Wegs and complications, and to drug side effects/damage. Smoldering Wegs is sneaky. Even my blood work looked fine all that time (ie, no inflammation). But it doesn't go out of range until my lungs are hemorrhaging.

[JanW]

It is probably fortunate that you SED rate does react to your WG -- mine seems to as well. At least with that the docs know that there is something wrong and will try to address it.

My doc has been very honest with me about 'remission' -- he frankly doesn't even use the word -- says you never know what course the disease will take.

[elephant]

WGrebel, sorry to hear that. Hope the cytoxan will take care of that &^%$# WG forever and put you in remission.