Could my daughter be in remission?

Hello everyone,

So, my daughter went for her doc appointment after being on the predinisone 40 mg/day for 6 weeks.  She was still seeing traces of blood in her BM's and going 3-5 times a day at this point.  So doc says she's a slow responder and recommended that she start taking Imuran while tapering off prednisone.  She has NOT started the Imuran yet because due to her weakened immune system, only a few days later she developed the Chicken Pox of all things, and yes she was immunized 5 years ago. 

So.....she was immediately sent to hospital and admitted for 3 days on IV Antiviral drugs to be sure she didn't get extremely sick. She is now taking oral antiviral drugs for a week (ending tomorrow). 

Right before she developed the chicken pox, her BM's became very normal, absolutely NO blood, nicely formed, only 1 or 2 times a day.  Aside from a couple of bouts of diarhea due to the antiviral drugs she has had normal bathroom habits for 2 weeks now.  She has tapered down to 20 mg/day on pred now and finally things are looking great.

So, my concern is, should she still start the Imuran once she is done her oral antiviral meds or could she finally be in remission?  This is the best she has felt since January and I can't help but think that starting the Imuran at this point may not be necassary.  If this had happened a week sooner, the Imuran would never have been brought up and they'd have assumed she was in remission.

They are saying that the fear is, once she has tapered off the pred completely that she could flare up again and will need to be put back on the prednisione. 

What do you all think and what would you do if it was your daughter or yourself?

mama, it is hard to tell what will happen. 20mg is a hefty dose of prednisone but I understand you don't want to start Imuran for no reason. What is the taper schedule like? Can you wait a bit longer and see how she does without Imuran while tapering? It is possible you get down to 15mg or 10mg and you start seeing symptoms. It is also possible she will not have any symptoms and taper off but 6 weeks on 40mg is a long time. I was always able to taper down to about 15mg without any symptoms. 10mg-15mg seems to be the toughest time for me.

The problem with waiting to start Imuran is that it takes a long time to work for some people. If she gets down to 10mg and hasn't started it and starts having symptoms, it could be possible that she will have to increase the dose and extend the course of prednisone to stay stable. This happened to me and it was a bummer because I had all these terrible side effects from Prednisone, I wanted to get off it so bad. I wish I had started 6mp sooner but in my case, I was one of the unlucky ones who never had great results with 6mp and it took a long time to do anything for me...

Hi Mama-

 

I don't know what to tell you but my own experience says I would rather be on Imuran than Prednisone.

 

Usually it is obvious when a person can't get off Prednisone and they say they are "Pred dependent"

 

My daughter was able to get off Pred as she got on 6-MP.

As the Pred tapered the 6-MP ( Imuran) kicked in to pick up the slack.

 

My dd has been on 6-MP for about 1 1/2 years now and that is all she takes along with VSL#3.

Knock on wood she has had no problems and is able to be a normal kid- she doesn't miss school, plays with friends, eats mostly what she wants- although I still have a huge say in that :), and life goes on.

 

While on Pred she had gained so much weight- that is gone now-

she was irritable, puffy and I knew it was bad for her body.

 

We also had 2 rounds of Pred- the 1 st time she got right into remission but it did not last...

the 2nd time took much longer to get better and it was clear we would not be able to get off without doing something more...

 

 

tough descisions but just know that many people(kids) use Imuran or 6-MP and live like normal teens and get to be normal kids!

 

I know of a boy who has been on 6-MP for 8 years and has been doing wonderful- gives me hope!

 

Do your research but knowing that school is starting I would want to get her off the Pred asap... No one can tell you what to do but hopefully you like and trust your Dr and want to follow what they say if it seems reasonable.

 

Good Luck :)