what now?

It has been almost two years since my son started Remicade. He had no reactions and responded really well to the treatment, but he was never able to go more then six weeks between infusions. He always started flaring around week 4, we would get by for the next two weeks, then start the cycle again.

Finally this summer his GI took him off of Pentasa (he was not absorbing it), and switched him to Apriso. The results were amazing, and he went into a full remission. It has been a dream come true!!!!!!! I was a super proud mommy watching him get to play football this fall... one of his dreams come true!

Then he got his last Remicade... about four hours after the treatment he began to complain that his arm was hurting and I noticed it was slightly swollen... the pain kept increasing and when I called the dr. he said to give him benadryl... helped a little.... got worse... dr. said to up the dose of benadryl... helped for awhile, but still got worse... Dr. put him on Tylenol with codeine.... this went on for almost ten days. The Dr.  thinks that he might be developing antibodies to the Remicade, but still wants to proceed with the next treatment.

I am not sure what to think... seems like it could be a big risk.

 

So I guess I am searching for help with what is next....  any input would be greatly appreciated

 

I'm sorry that you are going through this. I have a somewhat similar situation with my husband, except, his inflammation started over 3 weeks after taking remicade, so we're not sure what's going on with my husband.

My husband had his last remicade infusion on Oct 6th, and around Oct 28/29 he started having pain in his left butt cheek. It got worse, and then he said his knee was hurting and his neck was stiff, and I noticed that his knee was slightly swollen. We figured the knee and neck was because he was compensating for the back/hip pain, and we thought he'd just pulled a back muscle somehow.

We went to an orthopedist, and he took an x-ray of the spine, and said he has inflammation in the Sacroileac (SI) joint,and suggested NSAIDs. We said since he has crohn's he isn't supposed to take nsaids, so we need to check with the GI. But by the next morning, his knee was the size of a soccer ball. So, his Gi ordered some blood tests (ANA and anti-histone antibody) to check for lupus, and told us to see a rheumatologist. In the meantime, my husband has had 140oz of fluid drained from his knee, and a cortisone shot in his knee, and is on 10 mgs of prednisone. We have also seen a rheumatologist and she is testing him for lots of stuff including Rheumatoid Arthritis, and autoimmune hepatitis, etc. For right now, his knee is only slightly swollen, but he still has a stiff neck and his back still hurts a bit . . .

I am hoping this is a reaction to remicade, and not anything more serious, but for my husband it didn't start directly after the infusion, it started over 3 weeks later! So hard to tell. And we're still waiting for test results.

But there is a test called the HACA that is done by prometheus labs, that can tell if your son has developed antibodies to remicade. I think when he is initally developing these antibodies, it may yield false negatives (because the antibodies bind to remicade to neutralize it, and therefore are not found), but once the acute phase is over, it should be measurable with the test. Please talk to your GI about this test. Also, please have your GI rule out other things, just to be sure.

Once we get the results of all the tests they've ordered, if nothing is really diagnostic we too will be asking for that test. I hope all goes well for your son.

Hugs,
PV

Thanks Nanners and PV for the posts.... Sorry to hear about your husband PV, sounds like you are both going through the ringer. From what I read a reaction to Remicade can happen up to 21 days after the treatment.
As for changing his immuran dose... we can't he was at 150mg, but started having liver problems and had to drop down. He is in theraputic range though.

I am familer with humaria(sp), and that seems like a possible change, but he does not want to do the self injection thing...

What about Cimzia? is it an infusion? how often is it given? I will try to do some research on it. I am really curious as to if it is aproved for use in Peds.

Thanks again.... Nat