Calling all parents-i need your advice!

[Gmama]

Hi all I need to hear what everyone thinks about our situation.
Histrory:
Peri-rectal abscess in November 2012 led to our dx in February 2013.
After a bad reaction to cipro & flagyl LJ had a seton placed for a peri-rectal abscess/fistula for 6 weeks in early March. Since then it has remained active and continues to ooze.
Early march we also started Entocort & Pentasa.
He then had a bad reaction to Imuran.
End of July started Humira which (touch wood) he has had no bad reactions to. End of August we started tapering the Entocort. And he was off of it for 2 weeks which brings us to our check up this week.

LJ gained 25# (87# to 112#, 5'5") being on the Entocort for about 6 months. but has not gained in 5 weeks since we tapered down to 3mg then off.
Has not grown.
Does have good blood work.(sed rate 2;everything in a normal range except AST is 35 instead of below 32;best blood work ever)
90% of the time perfect poop once a day.
Feels fine at school does gym class etc. but is happy to "camp out" after school, not very active.

The dr. is really pushing for us to do Remicade. His thought is that if LJ is not gaining then the Humira is not working. He is not absorbing. And the fistula is not healed up.

Put him back on Entocort for a month for us to reconsider switching to Remi.

Hubby says absolutely not because we need to "save" the Remi for when nothing else will control his symptoms. The fistula doesn't bother him so we need to just let it go and give it a bunch of time to heal.
I am so frustrated with this disease I have no sense (which puts me in the dog house with Hubby:eek2:...he has no patience for the emotional response) Like all of us I just want my baby to be healthy.
Is 14 weeks long enough to decide if the Humira is working or not working because the fistula isn't healed? Is it awful to have to keep him on Entocort for his weight issues? What will that do to his growth?
Sorry this was long...appreciate your thoughts.

 

[CrohnsKidMom]

Hi Gmama, so sorry you are having such difficulty. I don't have any experience with Humira or Remicade. My son is on MTX. But, I do remember the GI saying, when explaining all the possible drugs used for maintenance, that he would save Remicade and use it as a last resort. But, he also said other GI's go with a "top down" approach, and start with Remicade. I hope you come up with a plan you'll all be happy with. Take care!

 

[kimmidwife]

Gmama,
This disease is so tough. It is hard to know but it seems 14 weeks is enough time to see some results. I wish you luck in whatever you decide.

 

[mish2575]

Remicade worked better than Humira for my fidtulas. Remicade is an earlier version than Humira. There are other bikogics to try, remicade isn't the last resort. Also its easier to stay in remission than to get into remission. I would go for the remicade. Good luck.

 

[Clash]

You may want to read through this link:

http://www.crohnsforum.com/showthread.php?t=42119

It is from an overview of studies done on IBD and one of the Chapters was on switching biologics. David posted a summary of that chapter.

The reasons for switching anti-tnf might include: primary non-response when first starting the medication, loss of response after some duration, intolerance to a medication, or interruption of doses.

- When you switch from one anti-tnf to another, there is no need for a delay between doses to let the other medication exit your system and you should get a full induction dose.

- Some people want to switch from infliximab (Remicade) to adalimumab (Humira) or certolizumab pegol (Cimzia) because they allow for self-injecting even when they're having a good response to Remicade. While there is no data on this, it is not advised. The primary reason is they feel if you lose response to the new medication, there's a good chance you'll lose response to the old medication as well due to immunogenicity (you develop antibodies to it). So you'd lose out on two medications. It is also not advised to switch from Humira or Cimzia to Remicade for the same reasons.

- One third of patients will not respond to anti-tnf therapy.

- If you don't respond to a biologic, you are a "Primary nonresponder".

- If you don't appear to be responding to a biologic, it's important that your physician make sure it's not due to something else such as, strictures, fistulae, abscesses, c.diff, small intestine bacterial overgrown (SIBO), CMV, bile salt diarrhea, etc.

- You should have your full induction dosing before being termed a primary nonresponder.

- For Remicade, some suggest the full induction dose then, at the 6 week dose, double the dose before determining non-response.

- For Humira, it is suggested to wait a full 12 weeks before determining non-response.

That is just part of the article the link above will take you to the rest.

 

[Maya142]

Have you considered adding something like methotrexate to Humira? My daughter did not really respond well to Humira until we added the methotrexate. After we added it, Humira worked really well for about a year and a half.

 

[Gmama]

Maybe adding methotrexate could be an option. I really don't want to take him off of the Humira. I think if the fistula wouldn't be an issue the dr would not be (what feels) so quick to want him to change to remi.

Thanks for all of the responses everybody. i really appreciate hearing what everyone thinks.

 

[CarolinAlaska]

I was leaning toward the switch to Remi, but after reading the post Clash posted by David, I'm not sure. What reasons did your GI have to recommend Humira over Remi to begin with? I'm glad he had such a positive initial response on the Entocort. Perhaps enteric nutrition could help kick him into remission here instead of going back on the steroids?

 

[Gmama]

We talked about remi & Humira and since Hubby wants to "save" the remi for when we are in dire straights, the GI was agreeable to try the Humira. (Which is one of the reasons I was so frustrated at our visit that he was pushing so hard to switch to the remi:eek2
It seems to me that the fistula could heal on the Humira but I'm just not sure how long that could possibly take. I don't want to consider Humira a fail if it just needs more time. :confused2:
It's a shame that LJ has the fistula because his blood work and other symptoms are really under control.

 

[Tesscorm]

I can't help you re the fistulas or abscesses as I have no experience with either. I know Sascot 's son has had problems with a persistent fistula, perhaps she'll chime in.

I'm not sure about this but, does an open fistula indicate active disease (inflammation)? If not, then perhaps giving humira a bit more time won't bring any consequences?? But, if fistulas do indicate active disease, it is important to get the inflammation under control and this does necessitate a decision as to whether humira is working on its own?? Normal labs don't always indicate that inflammation is under control and, unfortunately, neither does a lack of symptoms! :ymad: My son has very few symptoms yet his labwork has shown that inflammation continued to be present.

As far as weight gain, please do look into enteral nutrition. There are many kids here who use enteral nutrition as a supplement to their treatments, with good success with weight gain and growth. Here are links to some info re enteral nutrition:

http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/forumdisplay.php?f=161

Also, here's a link to the Fistula's support group - there may be a member who can give you some more info.
http://www.crohnsforum.com/showthread.php?t=47942

These are never easy decisions! :ghug: :ghug:

 

[Ams-Qld]

Sorry I can't help with the Humira/Remi situation as we are on Imuran/allopurinol atm. Not sure how it is going as we are due for colonoscopy/bloods/fecal cal/EUA next week. But our DS has had an abscess that developed into a fistula a year ago. I too have been doing lots of research into perianal complications in Crohn's. Unfortunately it seems to be (as far as I have been told) that perianal complications can exist with or without further inflammation and they can be very difficult to treat. At the moment we are headed for fistula plug surgery and follow up with HBOT if we can verify he is in remission or very close to. If not we will be reviewing our options with the Ped GI, Ped Surgeon and Colorectal surgeon next month. It is very difficult to know the right thing to do, I know his Crohn's was being undertreated at the time of his abscess and though his bowel seems ok atm his perianal complications have continued to increase. We are now dealing with large skin tags, fissures and four fistula tracts. There are no easy answers, so sorry you are in this position, I truly do understand. :hug:

 

[Sascot]

Hi, I hope the Humira will work well for your son. I just wanted to pipe in and mention that there is a chance that the fistula will not heal no matter what meds he goes onto. That doesn't mean the meds aren't working!
A fistula is a channel that then heals that way and the body then thinks is normal and part of your normal tissue. The way our GI explained it to us was they "hope" the meds might close the fistula (maybe if the fistula tissue is still not completely healed), but the main reason we went onto the meds is to make sure my son doesn't get any more fistulas. We gave the 6mp a good 8 months to try to see if the fistula would close but it has remained the same with the same amount of drainage. So now we are going for a fistula plug to hopefully get rid of the fistula and relying on the 6mp to make sure he doesn't get another one.