I'm back again with my concerns.

[momof8yrold]

Hi

I'm back with a list of concerns.

You might see my original post here

Things are not going great with my son. He was diagnosed exactly an year ago on the same day. We are still nowhere near to remission....

We started remicade last october (2015). After his first two loading doses, he had c-diff and had to postpone the third infusion by 2 weeks. He reacted for his 3rd and 4th infusion (even with premedications like benadryl and tylenol).He had flushing both times.

Doctor suggested adding solumedrol (premedications) for 5th infusion. We also decided to do fecal calprotectin test, remicade antibodies test and remicade level test before 5th infusion.

Last week his 5th infusion went well (I mean no reactions, he was premedicated with solumedrol, in addition to benedryl and tylenol). I got a call from the doctor couple of days back that his remicade level was almost 0 and he has significant remicade antibodies. His fecal calprotectin has gone upto 1150 (from around 930).

My son weighs 60lbs and he was given 150 ml every 8 weeks.

Now doctor is suggesting...

since my son didn't react when we used solumedrol, the doctor wants to up the dose of remicade to 200 ml every 8 weeks and monitor.

My concerns..... (We are discussing it with our doctor next thursday, but your inputs are very valuable)

1. Since my son already has antibodies, will upping the remicade help? After seeing Mehita's post on antibody levels reducing...I'm so hopeful though.

2. Should we ask the doctor to get the remicade levels tested at 4 weeks, to see if we should reduce the interval too?

3. Should we add another immuno suppressant like imruan or Methotrexate along with remicade?

4. Should we start on another dose of prednisone to bring down the inflammation?

5. Should we do a combination of above options? (for example, Reducing frequency + increasing dosage)?

6. He was tested positive for strep throat couple of days back. He is really in pain. Our PCP started him on amoxicilin (antibiotics). To reduce the fever and pain, do you recommend giving Ibuprofen? I'm currently giving him only tylenol and it isn't helping much. I'll call the PCP and ask for stronger pain medications tomorrow (it's still sunday here).

DS, diagnosed with moderate-severe Crohn's colitis at 8 on 15th april 2015.
Medications:
Past: Prednisone, Flagyl, Prilosec-20mg once a day, Canasa 1g at night
Current: Remicade 150ml/8 weeks, Pentasa 500mg 2x a day,
Supplements: Vitamin D, Ferrous Sulphate, Florastor and multivitamins
Pediasure 2 to 3 each day.

 

[my little penguin]

No ibuprofen not permitted at all
Strep stinks
But cold Popsicles and slushies help a lot

Sorry about the reaction

 

[Maya142]

Poor kiddo! I'd call and ask about the Ibuprofen. Sometimes doctors will ok it for a couple days. I'd ask both his PCP and his GI. Since he isn't in remission, they might not let him take it but you can ask.

I don't have much to add about the antibodies situation, since my daughters have never had antibodies. Typically an immunosuppressant is added to prevent the formation of antibodies, but I don't think they can do anything if you already have antibodies.

Some doctors are now only using immunomodulators for the first 6 months with an anti-TNF for that reason.

I'm sure someone who knows more will chime in soon.

The other option would be switching medications - usually Humira is next. It is a shot that is given every 2 weeks (can be given every week if necessary). If you do switch, I would ask about combining it with an immunomodulator like MTX or Imuran or 6MP to prevent the formation of antibodies.

 

[pdx]

I'm sorry that things are not going better for your son. I think it's worth continuing to try Remicade a little longer at a higher dose. Our doctor increased frequency first when my daughter's levels were low (to every 6 weeks), and then increased the dose a few months later. I think your idea of testing levels at 4 weeks (or maybe 6 weeks?) is a good one.

You might want to consider trying EEN, rather than steroids. Several kids on the forum, including my daughter, had good luck using EEN when our kids were taking a while to respond to Remicade.

Good luck. I hope that your son is able to continue with Remicade and starts responding to it soon. And I hope that the strep is gone soon too.

 

[Mehita]

1. Since my son already has antibodies, will upping the remicade help? After seeing Mehita's post on antibody levels reducing...I'm so hopeful though.

2. Should we ask the doctor to get the remicade levels tested at 4 weeks, to see if we should reduce the interval too?

3. Should we add another immuno suppressant like imruan or Methotrexate along with remicade?

4. Should we start on another dose of prednisone to bring down the inflammation?

5. Should we do a combination of above options? (for example, Reducing frequency + increasing dosage)?

6. He was tested positive for strep throat couple of days back. He is really in pain. Our PCP started him on amoxicilin (antibiotics). To reduce the fever and pain, do you recommend giving Ibuprofen? I'm currently giving him only tylenol and it isn't helping much. I'll call the PCP and ask for stronger pain medications tomorrow (it's still sunday here).

1. It's possible. Like you said, case in point with my son, though I still haven't had a chance to ask his GI why his antibody levels would have dropped like that.

2. First I would ask why you're only increasing dose and not frequency, just to get an understanding of what your GI is thinking. I'd think 6 weeks would be more helpful since that's what he would likely drop to if you do increase the frequency.

3. That would be an option. As you know, DS did but we have no indication it's helping (or hurting) yet, but studies have shown it can be helpful. It's worth asking about. My son's antibodies dropped prior to starting mtx.

4. I'd leave that up to the GI. Like PDX mentioned, EEN is an option too.

5. I'd think that through a bit more. If you do too much, you won't know what is working and what's not. Again, a good question for your GI.

6. We avoid NSAID's, but when he had his resection and was inpatient, they did give him some, so again, probably the call of your GI, but I would be concerned since your son still has inflammation and doesn't seem to be in a stable spot right now.

Just my opinions. Hang in there, Momma. I know it's hard, but you'll get through this.

 

[momof8yrold]

My son''s health became worse over the weekend and we took him to the PCP again. Now, the PCP is saying he's having mononucleosis. Its caused by the herpes virus. Since the swelling is bad, they want to put my son on a 5 day course of prednisone. There is no treatment for the virus. They say it'll resolve by itself. But...it would take about 2 months. I spoke to our GI..we are meeting him this thursday... (No remicade till the virus resolves)...I'm feeling very helpless.

I'm totally stressed out and to add to it..I'm 4 months pregnant now...

I want my miracle soon....I can't handle it....

 

[Mehita]

Ugh. So sorry, hon. Big hugs to you and your little guy! Well, I guess this answers the prednisone question. Maybe it's a blessing in disguise? Stay positive if you can.

 

[Farmwife]

Sorry to hear about the latest round of battles.
Just to give you a comparison the my 7 year old girl is on Remicade every 4 weeks at 300ml. However she doesn't have antibodies building up

Their might be some wiggle room for Remicade but just remember that Humira could still be an option.

 

[pdx]

Oh no! I'm glad you have an appt with your GI soon, and I hope you can come up with a good plan with him.

It's got to be hard to be pregnant through all this. (But congratulations!) Try to take care of yourself too, but I know that can be hard when your child is sick. :ghug:

 

[lcpalmer]

I am sorry you are having this stress with no real answers or solution. I hope you get positive news soon!

 

[Worried mama]

My son was originally on an 8 week remicade schedule. No results. A year and half later, we are now on a 4 week schedule, 300ml. We also recently added in methotrexate to help and added in feeding tube overnight. He's gaining weight now, but still too soon to say remission. Still waiting on that vertical growth! Our GI did test levels often while we were trying to figure out dose/interval, etc. not sure if this is helpful or not. Feel free to ask me any questions. So sorry you son is struggling.

 

[malorymug]

Hi. I had a post all written in my head, but then I kept reading....Sorry about the mono. Big blow. The course of steroids should help the IBD too. If they decide to go back to remicade after the virus, I think it is worth a shot to increase the dose and frequency.

I just went to an IBD conference for adult GI and surgeons. And while it was sponsored by Prometheus and Janssen (maker of Remicade), there are several large studies that show that increasing the dose to 10mg/kg and frequency to 4 weeks can reduce the antibodies, promote healing, and keep a decent and constant remicade level in the system. Once there is healing, the Remicade dose can decrease. It is definitely worth a try. And yes, they also encourage an immunomodulator, like methotrexate or imuran to reduce the antibodies.

Good luck with all of this.

 

[momof8yrold]

Any idea how long he has to be off Remicade? I'm really hoping that its not too long...fingers crossed.
We couldn't meet our GI yesterday as the appointment got canceled. The doctor was sick. I really can't wait to get the answers from the GI...

Do you guys have any suggestions for mono?