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Update on Johnny- on to Humira

So Johnny's fecal cal has been slowly going upwards. It was in the 280's last time they tested, which isn't bad but the trend was definitely moving upwards every 3 months. He is also EBV negative, so he has never had mono and apparently there is new evidence that shows that the Lymphoma risk goes up if mono is contracted while on 6mp. So with those two issues combined, GI suggested a med change. GI ordered scopes and MRI, initially he suggested Methotrexate but do to a spot of inflammation that showed up on the MRI, he is now suggesting Humira or Remicade. We have decided to go with Humira, simply because we can administer it at home and no lengthy infusions. We would like to start on the syringes but we may have to use the pens and I am not sure if that is an issue with the pharmacy or our insurance but we are hoping to get the syringes.

I am a little down that we have to move on to Humira but after a recent X-ray of his knees we found out his growth plates are still open so hopefully we can get a few more inches out of him!!

I would love any suggestions!! We can still switch to Remicade.

I hope that the humira does the trick! C isn't happy with the shot but we are still using the pen. We are supposed to be checking into to the switch to syringe. He takes mtx injection along with the humira.

I hope everything clears quickly and he gains those couple inches!
I do pray this is the answer at getting him back in remission.
Grace did Humira and Mtx shots. It hurt but she was a trooper.
She had no side effects from it.
We've only ever used syringes.Humira does have a program for training you to administer the syringe. The injection sting is tough but in our experience it has gotten easier with time. We find it unobtrusive as far as scheduling.


Staff member
It definitely stings but my girls got used to it. We let the shot warm up before we gave it, which helps with the pain. We also iced and did the shot while watching TV so they were distracted. Chocolate after the shot also helped ;).

We used the pens because my daughters didn't want to see the needle, but I wish we had used the syringes because I hear they are less painful since you can control the speed of the injection. My older daughter is still on it and I'm STILL trying to convince her to switch to syringes. Your insurance shouldn't give you any issues about using the syringes vs. pens - as far as I know, it's all the same to them.

The important thing it remember is that while some kids respond immediately, others take time to respond. My younger daughter took more than 6 months - and only responded after we had added MTX and moved to weekly shots. My older one responded in 3 months and is also on MTX.

Hope it works quickly for him! Good luck!

my little penguin

Staff member
Ds uses the syringe but we add lidocaine to the humira syringe ( so only one shot)
Lessens the pain a lot
Also took 3-5 months to see a difference
Ended up adding mtx and eventually weekly humira after two years


Well-known member
We have not used Humira here so I can only give you the Remicade perspective. True Remicade is less convenient, however, if there is still considerable growth to be had, or a lack of response etc, Remicade is more flexible in terms of tweaking dose and schedule.

Another consideration we are taking into account for our younger daughter when choosing is that often the biologics only work for a certain amount of time. Our younger daughter is only 12 (done growing) so if (big and unknown if) we have a limited time with a biologic, we would like to use Remicade now so if it stops working during the late high school/college years she can switch to the more convenient Humira....of course this rationale isn't working so well with our older daughter because she is a junior and Remicade is still going strong so looks like she is going to have to figure out infusions in college...bummer.

Good Luck!
Can only speak in regards to Remicade here as well. We haven't really found it that inconvenient but then GI's office is about 10-15 minutes away and it's only once every 8 weeks for us. Jack has been on rapid infusion since August so we are completely done 1 1/2 - 2 hours (depends on how fast the pharmacy takes to send up Remicade) once the infusion starts it's an hour. Before we started the rapid infusion it was 4 hours which he chose to relax, finish homework, play video games. We even had some great conversation I mean when you're stuck with your mother for 4 hours (even better than having them trapped in the car this way they have full attention no pesky driving to get in the way).
We've briefly considered switching to Humira for college but then we don't want to mess with what's working so as he is listing colleges he wants to visit, I'm checking nearest hospital and infusion centers :)
DS does Remicade and I could almost quote Jacqui word for word from her post. He doesn't mind chillin' at the infusion clinic. Due to needle issues, I dread the day that Remicade stops working and he has to consider Humira, though I do see how this would be more convenient for college life if you're thinking a couple of years down the road.

What does Johnny think?
I never really thought about doing the infusions now so it would be easier in college. Although it is likely he would still be on whatever he chooses now in college, he's only 3 and half years away.

He seemed to lean toward Remicade at first but I think that was because the GI had a college student come in and talk to Johnny and he was on Remicade and said how great it was. He likes the flexibility of only needing to think about it every other month, especially because he and his family travel quite a bit. But when he heard the first infusion usually takes 6 hours and we would need to come in every other month to the hospital he decided on Humira. The GI really said either was fine, he seemed to have no preference. Remicade is also more expensive and I wonder if it isn't better to do that now while he is on our insurance rather than when he is a young adult with bad insurance???

Lots to think about, everyone has been so helpful!!!

my little penguin

Staff member
Humira is more expensive
It's covered by pharmacy
Remicade is a procedure so medical coverage
Either way you max oop
Both have assistance programs not based on need


Staff member
Also, kids can be on their parents' insurance plans until they are 26.

I'd ask him what he prefers. My daughters had to go in every 4 weeks for Remicade but they still preferred it to Humira. If you do the infusions at a Children's Hospital, we found that the nurses make a big fuss over the kids. My girls loved missing school and taking a nap or watching TV. We never did the rapid infusions - not sure why they weren't offered - so it was like 2.5 hours each time. That meant were there about 4 hours or so.

But they still thought it was WAY better than Humira. That said, now that they are in college, both are glad that they're doing shots. But, my older daughter did tell me she thought it would be easier to do infusions in college because you don't have class all day. Plus many kids only have classes Mon-Thurs at her school, which leaves Friday completely free. So I wouldn't worry too much about college.


Well-known member
LOL! There is also O's angle...when the colleges tell her she can't have a car on campus she says, "but I have to get to infusions" across the board almost all of them have said that exception would be approved....great One more thing to worry about....my immature freshman driving around a new place!

She looked at a school in Philly and was rather interested and then we told her...no car on campus you can take mass transit to CHOP...that school sunk like a lead balloon:rof:
Curious, what's the longest a kiddo in our group here has been on Remicade? Is it crohnsinct at three years? Anyone else longer?


Staff member
Our GI has one kiddo who has been on Remicade for 8 years!

The longest M has lasted on a biologic was 2 years and that was Humira.
The LA Laker from the article posted by Jenn last week started Remicade when he was 16, and he's still on it now at 23. That was one of my favorite things in the article (along with the fact that when you're in the NBA, your infusion nurse comes to your house). :)
I didn't mean to sidetrack from Johnny... just wanted to get some perspective. With three and a half years yet before college, I was just curious to know if there was a common petering out time. Whatever you decide Johnnysmom, good luck!!

I know DS was all for Remicade because the thought of the Humira needles was just too much for him. I'm glad we let him have a say in the matter because it's made going to infusions easier. More buy in on his part, so to speak.
No experience with either, just wanted to wish you all the best for whichever he chooses. Hope it works well


Staff member
S has been on remi 3 years. No experience with humira so can't compare the two but S doesn't mind the infusions 'too much'. He's fine with the actual infusion - sleeps, watches a movie, etc. but does get annoyed at the time commitment. Although his school is just under 2 hours away, he usually has his infusion near home, on Saturdays. It allows us to see him every six weeks ;) and he gets to see his friends at home. But, our infusions are done by a 'chain' of infusion centres (Inviva/AIM Health) and he is able to schedule his infusions at different locations. When travelling home just isn't possible, we have moved the odd infusion to the centre near his school. This extra convenience has been a big help more than once!

Our GI preferred remicade for S's age group ('young') because remi is more closely monitored in the sense that infusions are scheduled (less likely to be forgotten or done late), no 'handling' of medication, if an infusion is missed, GI office will be notified, no question about error in dosage and more convenient for bloodwork.... aside from these reasons, GI had no preference over remicade or humira.

Although S does sometimes complain about the time commitment (especially if around exam schedules), I think he'd complain more if he had the responsibility of keeping med in fridge and taking out early to reduce pain, needing to remember to take it every other week (ie 'did I do it last week?'), he'd tolerate the pain but would complain and then would complain about the extra job of adding lidocaine to reduce the pain, etc. :ywow: and, while S is generally fairly responsible, knowing his forgetfulness, I'd be more worried if this was all in his hands! :eek:
Sorry I haven't been able to respond, my younger child had pneumonia. Luckily Johnny was able to avoid getting it. (knocking on wood!!)

Thanks for all the great advice, we have decided to stick with Humira but are still waiting on our insurance company.

On a side note, we are suppose to do a mission trip to Cancun this summer and I was alright with it when Johnny was in remission. Now I am sort of second guessing whether we should go. He is suppose to go on Doxycycline and I know that will make him very sensitive to the sun, also I worry about bacteria starting up a flare. His initial diagnosis came after a trip to the Dominican Republic that caused dramatic weight loss right after we returned. These mosquito born diseases that result in joint pain are on my mind too. I go between thinking it is irresponsible to take him at 15 when he is just struggling for remission and starting a new med and thinking I am over-reacting and need to not let this disease or my fears change how we live our lives.

Any advice or experiences?

Thank you all!!

my little penguin

Staff member
Does his Gi know about the trip and the doxicycline ?
Ds had to take one dose possible tick Lyme bite
Gi was not happy about that particular antibiotics at all.
You must weigh risk benefits
For me way too much Gi risk which is why the first question docs ask when you have severe Gi distress is where you out of the country .

There are no folks who need help in the us ???
Just saying if helping others is the goal isn't there a way to do it without the disease risk involved and abx and stay within the US ..

Tess left her son go on a trip but not sure of the specifics
The GI said he had no issue with the doxycycline. Which I thought was weird because the dermatologist said she wanted to prescribe it but she was sure he would have an issue with it so I had to check with GI and Nephrology first. She gave him a topical and we go back in 6 weeks to see if he should do the oral.

The only draw for this trip as opposed to somewhere in the U.S. is that we are going with a couple other families we are very close to and one of the families moved away so we don't see them all that often. But they will go again next year so I suppose I could wait and get Johnny on his meds and stable and then re-evaluate. Johnny really wants to go though, I think he feels I am overly cautious. (Um yeah-I'm the mom and I feel responsible if things go wrong!!)


Well-known member
You should really consult a travel doc. O has had three out of the country mission trips nixed. Mostly due to the meds she is on and not being able to get necessary vaccinations. Some the gi approved by the travel doc was more familiar with conditions, requirements and such that she said not to go. However, a recent trip to South America was nixed by gi due to risk of dengue fever.

As for the doxy, our gi prefers to stay away from it.
We canceled a trip to the Big Island of Hawaii for this upcoming spring break because there is a small dengue fever outbreak there right now. My daughter seems to be in remission right now, and I don't want to chance losing that. (And to honest, dengue sounds rotten enough that I didn't want to risk it for the rest of the family either.) I know it is really disappointing to have to cancel trip plans, but at least check in with your doctor about it.


Staff member
I would see a travel doctor too. We have been to India several times since the girls have been diagnosed. They have always been on some biologic (usually Remicade or Humira) plus MTX (or Imuran).

NO ONE told us it was a bad idea to go - not their rheumatologists nor M's GI! They just said the girls needed TB tests when they came back.

Dengue is very common there. We used a lot of mosquito repellant (with DEET) but there's not much else you can do. Too hot to wear long sleeves or pants. We used mosquito nets in the house. I kept them away from crowded areas (markets etc.) but that's really it.

In hindsight, I wish we had talked to someone about the risks and what precautions we could take. They probably wouldn't have said much, but it would have made me feel better!

The Doxycycline would worry me most, to be honest. Isn't there anything else he could take instead?


Staff member
I was worried sick about S going to Dominican for his grad trip (especially as I wouldn't be there!) too. I don't remember all the details but, some of what I remember...

- mosquitos were a concern - but, GI assured me that common sense (ie minimize exposure during dusk/dawn) and a deet based repellent would be fine. (No problem when he returned.)
- I warned S about drinks made with water/ice and told him to stay away from fruits/veggies washed in water (easy with S as he doesn't really like fruits/veggies). I also sent him quite a supply of Boost shakes - enough that he could continue with a couple per day plus use them if he wasn't well and needed to substitute some meals with shakes. As the weight in the suitcase was a bit of an issue with the premade shakes, I think I even sent an extra container of powder shakes so I could send fewer premade shakes... (I also sent his original dx summary to show at customs if they had any questions re all shakes.)
- Doxy was also suggested to us. I did not want him to take it because of the possible connection to crohns. I don't remember exactly if his GI also felt S shouldn't take it or just 'went along with me' but, instead, his GI gave me a prescription for antibiotics (sorry, I can't remember which) that S was to take with him on the trip and use only if he developed diarrhea WITH any sign of blood. (He didn't need to use it.)

Between knowing he had the shakes on hand as well as the abx, I felt better about him going. :)

Here's a link to the thread where I discussed his trip - there's a bit more info there.


In the end, he was fine. Since then, we went on a cruise (even with the norovirus worry - is that what it's called??) and he's gone to Portugal with friends with no GI issues. I've never asked for the abx prescription again but I do send him shakes and/or powder on every trip. (It's a safety net in case he gets sick and makes me feel better. ;))


Staff member
Wanted to add that with Dengue specifically, mosquitos that carry it bite during the day. So take precautions all the time ;).
On a side note, we are suppose to do a mission trip to Cancun this summer and I was alright with it when Johnny was in remission. Now I am sort of second guessing whether we should go. He is suppose to go on Doxycycline and I know that will make him very sensitive to the sun, also I worry about bacteria starting up a flare.
I pop into this section every once in a while just to see "what's up" and the above caught my eye.

I was very surprised to see the use of an anti-malarial in a discussion about travel to Cancun. Mexico in general has very low malaria risk levels (I've been to Mexico - mostly Mexico City, Oaxaca, and Chiapas three times in the last year and don't even think about Malaria risks).

The CDC notes that Malaria is present in some provinces in Mexico, but not Quintana Roo (except immediately against the Belieze border), which is the location of Cancun. Yucatan province is also malaria free, and there is some limited risk in Campeche (next door).

See: http://wwwnc.cdc.gov/travel/yellowb...aria-information-by-country/mexico#seldyfm707

Obviously, dengue fever is present throughout the region, but there is no medication that can prevent that. Best thing to do is to cover up when mosquitos are active... which is the same thing you should do if worried about malaria.

Just a general note about international travel - I've never let Crohn's stop me from extended trips to the third world (though the current every other week dosing of Cimzia is a constraint I'm generally unhappy about) but I also have never left on a trip when I wasn't at a reasonable level of remission.

Finally, I just returned from two weeks in Nicaragua over winter break from my graduate school program. Saw my GI (at Mayo) last week. He asked about my digestive system to response to eating in the third world. I noted that I generally feel better in a third world country than I do at home. Lower hygiene standards and food storage practices means more bacteria, etc in the food. This gives the overactive immune system "something to do." The GI indicated that this was not outside current theory and thinking about IBD and the immune system. I'm a single data point ... your mileage may vary.


Well-known member
Northwesterner - I actually just read that theory somewhere! Just theory right now no proof but found it interesting.

Also wanted to note that India was pulled off the table for my daughter because of her Remicade use and the prevalence of TB in the region we were going to. GI was fine with the trip but travel doc was more up on the goings on.

Come to think of it, our GI was fine with O going to an area of South America and white water rafting. The travel doc said, "NO WAY! The villagers use that river as their toilet".

Travel docs are indispensable!

I know it sounds like I am overly paranoid but they are my kids and if I put them in harms way and something happened I could never forgive myself. When they are adults, they can make their own decisions (DON'T TELL THEM THAT).

Plenty of fun adventures and mission work here in the U.S. for my kids with Crohn's.
He would be using the doxycycline for a rash he has on his face, which isn't even that bad, but the dermatologist said she wanted to hit it hard and fast. He has a topical ointment right now and she said if that we would re-evalutate in 6 weeks after I spoke to GI. I'm not really that concerned about the rash to have him take the doxycycline. But we will chat with the dermatologist when we go back in a few weeks.

We have to decide Monday about the trip, we haven't had much time to think about it. My daughter had pneumonia and had a fever for 2 weeks straight:eek2: Somehow Johnny managed to avoid getting it!! Then the new cat we adopted from the rescue mission 3 months ago was really sick. The vet thinks the cat has IBD- what are the chances!?!:ybatty: