Remicade Update & Good News

[theresad]

My son started Remicade at the beginning of July, finished up his loading doses and has his first maintenance dose in mid-October. We just had a check up @ the GI and....

- He gained 22 lbs. in 3 months. OMG! I guess my high protein high fat shakes worked better than expected... Plus the kid is now eating me out of house and home. As an Italian mom, this is the most thrilling part of my life right now.
- CRP down from 88 to 5. OMG x2!
- His HGB/HCT are up into normal range (still @ the low end, but we'll take it)
- His Albumin up to 3.9 (hoping it keeps climbing)
- All other labs within normal range

Our GI is thrilled. He said we always hope for these types of responses, but don't always see it work this fast/well. So finally after bumping along for years, looks like we found something that works.

We tapered off Entocort a month ago, but doc wants to stay with Imuran (not change to MTX, damn) until we get through the rest of the year. He doesn't want to disrupt the progress that's happening. I'm still nervous about the combo, but I'm going to shut up and just cross my fingers.

We are still having this annoying fight with an infected cyst behind his ear. Antibiotics worked for awhile, but this thing is relentless. We might have to go on another round of ABX, which I hate, but on the upside, my son likes how it keeps acne at bay Kids and their priorities. Otherwise, a couple very short spells with sneezing/stuffy nose that seemed like allergies, but nothing else to report.

So onward with Remicade! Let's hope for a long stretch of success with this one so the kid can finally finish college and get on with life!

Thanks so much everyone for your continued support. It means so much.

Theresa

 

[pdx]

What great news! Thanks for the update!

 

[Maya142]

Love hearing these success stories I'm so so glad it's doing such great things!

 

[my little penguin]

Glad remicade is working well
If it helps
Since he was already on imuran then even if he stops he still has the same risk as a the combo
The studies were done with taking imuran at any point in the patients history doesn't have to be at the same time

 

[Tesscorm]

Great news! Hope it keeps working this well for a long, long time!

 

[Mehita]

What wonderful news! Woohoo! :dusty:

 

[Sascot]

Yay, great update, hope it keeps going for a long time!

 

[Catherine]

Glad the remicade is working.

Has there been any mention of draining the cyst? With ABX.

 

[CDJ]

I can so relate to this. Josh started Infliximab in March this year and it has been a wonder drug for him. I can't believe the difference it has made to him in such a short time. I can honestly say this is the best he has been since he was diagnoised 6 years ago.
He has gained weight, grown 5 inches and started puberty :thumleft:

I wish that he had been started on this earlier. It was talked about two years ago, but they decided to hold off on it. In that time he went down hill and lost time at school and was admitted to hospital.

He is also being kept on azathioprine [ imuran ] as apparently it helps with the infliximab.

 

[theresad]

@Catherine - the dermatologist did mention removing the cyst after the inflammation was resolved, but in our follow up appt., he recommended we just leave it alone and see what happens. Unfortunately, now we see what happens So back to the derm. to figure out if we made a bad decision...

@CDJ - same boat! We had been trying to avoid Remicade, and ended up with a mess. I try not to dwell on the decision to postpone it, but when they respond this way, it's hard to not think of what we could have avoided had we started it sooner. This is a really hard process, and I guess we just need to be thankful that Remi is so effective, and hope for a long-lasting remission! So glad to hear that your son is doing so well too!!

 

[Jmrogers4]

The should of.... oh yeah so have been there, am there. Now I just want it to keep working forever.
Glad he is doing so well and hope the derm can get the rest under control