What is considered remission?

[blessed2bamommy]

We plan to ask my daughter's doctor about this at her next appointment (10/22) but until then, I'd love your input on this. What is considered remission? How long did it take you, personally, to reach remission? My daughter is at the 7 month mark of her dx. She's lots better but remission hasn't been mentioned yet. What does remission "look like"?

[HopeinTN]

Great question and I can't wait to see the answers you get back. By the way, I'll be and Vandy on 10/22. Is that were you all will be? Take care!

[blessed2bamommy]

Great question and I can't wait to see the answers you get back. By the way, I'll be and Vandy on 10/22. Is that were you all will be? Take care!

Yes, we'll be at Vandy's Childrens. She has three appointments that afternoon so we'll be there for a while. She sees her rheumatologist, nephrologist and neurologist.

[RudiK]

Hello Kim, I was "declared" in remission after about 6 months (diagnosed in April 2011 - in remission Oct 2011) when the ANCA test titer was below 20 and when the BCP and urin analysis was "clear", at least according to the doctors. Once in remission, I was moved from CTX to imuran (150 mg - now on 100 mg), preds gradually reduced from 75 mg to now 5 mg, and totally taken off of sulfameth/trimethoprim. I feel better, the nightmares caused by the CTX are gone. But, I still have trouble controlling my weight, still have not much energy and very little endurance, the loss of feelings in feet and the finger tips of my right hand (peripheral neuropathy) has not changed and probably will never improve, my kidneys still function only at about 35 - 40% which will probably not improve (lucky for me it is enough were I don't need dialysis). I'm lucky in that the WG did not attacked my lungs, sinuses, eyes, etc.
Good luck to Bethany and all my best. My prayers will be with her.
Rudi K.

[blessed2bamommy]

Hello Kim, I was "declared" in remission after about 6 months (diagnosed in April 2011 - in remission Oct 2011) when the ANCA test titer was below 20 and when the BCP and urin analysis was "clear", at least according to the doctors. Once in remission, I was moved from CTX to imuran (150 mg - now on 100 mg), preds gradually reduced from 75 mg to now 5 mg, and totally taken off of sulfameth/trimethoprim. I feel better, the nightmares caused by the CTX are gone. But, I still have trouble controlling my weight, still have not much energy and very little endurance, the loss of feelings in feet and the finger tips of my right hand (peripheral neuropathy) has not changed and probably will never improve, my kidneys still function only at about 35 - 40% which will probably not improve (lucky for me it is enough were I don't need dialysis). I'm lucky in that the WG did not attacked my lungs, sinuses, eyes, etc.
Good luck to Bethany and all my best. My prayers will be with her.
Rudi K.

Thank you so much for your input. This is good information to read and gives me a bit of better understanding. At Bethany's September appointment was the first time she's not had protein in her urine and very little blood. This is an improvement. Her Creatinine numbers are hanging steady around 1.40 (ish). In Sept. they lowered her Pred. to 5mg a day. Hoping if things continue to hang steady and improve she'll be headed to remission soon.

Again, thank you for taking the time to reply.

[drz]

My remission is similar to Rudi buttook but took a little longer.

The doctors declared me in a drug induced remission when my Weg symptoms were stable, labs had improved, and the doctors thought my current meds were holding the Wegs at bay so no additional new treatment seemed required. I still had residual symptoms like blood in sinuses and latter on had a couple more flares. My labs and symptoms have been stable now for over a year so I am still considered to be in a drug induced remission and will probably continue on my maintenance meds (175 azathioprine and 5 mg pred) for a long time. Some people get a drug free remission which is really nice if you can get it. Younger people in good health and little WEG damage can often do so. The doctors will usually tell you when they think you have reached a state of remission. Treatment is usually easier then but there is still risk and worry of a flare but if they are watching you closely and catch any flare in time the prognosis is generally very good and it is much easier to get back into remission. Best wishes for better health. Her numbers sound pretty good to me which is very encouraging.

[HopeinTN]

Good luck with your next appointments. I'll send good thoughts your way. I will be there on that day from 1:30 to 4ish.

[blessed2bamommy]

Good luck with your next appointments. I'll send good thoughts your way. I will be there on that day from 1:30 to 4ish.

We'll be there during the same time frame. I'll PM you my phone number.

[annekat]

We'll be there during the same time frame. I'll PM you my phone number.

Seems like a happy coincidence that you will all be there at the same time! I hope you get to meet!

[Lightwarrior]

Seems like a happy coincidence that you will all be there at the same time! I hope you get to meet!

I have only had brief times of no symptoms and those have all been drug induced. But I am excited that some of you may get to meet..I will be sending you all light and hugs