6MP Intolerance, What’s Next?

I'm sorry you're having such a tough time. It's so difficult when your child gets diagnosed, and particularly difficult when so young. 6mp is essentially the same as Imuran. Not sure what dose she was on, but I would think your GI would have put on too high of a dose. Unfortunately, with any drug, we all just react differently, and there's no way to predict it.

Fortunately, there are other immunos that she can take. Methotrexate might be the next that your GI will want to try.

The good thing is, that in your Daughters lifetime, the advancements in treatment will continue, and she will have a very good chance on keeping this disease very well controlled. While anti-TNF's are the state of the art treatment that we have now, I can understand that you might want to defer that option for as long as possible.

Imuran metabolizes within the body directly into 6mp. Taking 6mp just saves a step, meaning lower dosages and smaller pill sizes. Since both produce the same end result, I would not expect one to react any differently than the other.

MTX is different and worth a shot, a bit different in how it works.

Although given her reaction, I would inquire about humira/remicade.

I've done methotrexate injections. I actually preferred them to the Humira spring-loaded pens, because it was far less painful. The trick is to inject it slowly - go too fast and it starts hurting. But do it over a minute or so and there's no pain at all.

But that said, I think Infliximab is the better choice so I would go with that. It's more likely to work and it also has less toxic side effects. I'm sorry your daughter got Crohn's at such a young age - I hope she can get into a lengthy remission. You probably know this already, but prolonged use of steroids are best avoided in children, as they can stunt growth. Enteral nutrition works almost as well as steroids do for paedriatic Crohn's, so if she does get another flare up I'd go the diet route again if possible.

Some of us take MTX and remicade simultaneously, not a prob. You can take MTX via IV and also in pill form.

Beyond remicade and humira, there is also xeljanz. Xeljanz is a pill-formed biologic, and might be easier if shots bother her.

Remicade infusions are a tiny needle prick and then no sensation thereafter. It is the equivalent to getting a flu shot, tetanus booster, and or any of the variety of shots a child/adult would get. I would expect her to react the same to remicade infusions as she would to those aforementioned things.

When you start a biologic, you go through what is known as loading dosages. The goal is to get your blood concentration of the biologic up to ideal therapeutic (healing) dose. So, you get a bunch of shots (humira) or IV infusions (remicade) close together when you start out. For adult patients, that is an infusion of 5mgs of medication for every 1-kilogram of body weight at week zero (0), two (2), and six (6), after which it is an eight (8) week interval. Not so sure on pediatric cases but I would assume it is somewhat similar, maybe with less medication each dosage.

I've never experienced any side effects from remicade. The most common side effects are infusion-site reactions during or within 48-hours of an IV infusion (generally mild things like a rash, tiredness, shortness of breath, elevated heart rate, etc.). They give you premedications of tylenol and an antihistamine (either drowsy-benadryl or non-drowsy-claratin) to help prevent those reactions. Some say they're very tired after the IV infusion, so it might be good to schedule that and have the rest of the day to take it easy, and nap if needed.

It really depends where she gets her IV infusion. I used to get them at my gastereoenteroligist office, it was a room with 2-4 other Crohn's and UC patients. At the hospital, you never know what you're going to get. I get my infusions now at the hospital, they put me in the PPR (Post Procedure Recovery) room, so in addition to other Crohn's and UC patients getting Remicade, you also get people who just got out of endoscopy, out of surgery, etc. Sometimes you might have some cancer patients getting their chemo at the hospital areas. You can get remicade done at some sports medicine places, as it is a simple IV infusion and there might be other options. I'd certainly ask around and see who does them and what your insurance covers. Oh, and some do get home-IV infusions as well (a nurse visits your home and does the infusion there) that could be done at your home and be less concerning for her if she's in a familiar place!

But a rundown of how it goes for remicade. You arrive they weigh you (weight-based drug), give you premeds of tylenol and an antihistamine, the nurse initially checks temperature and pulse and will periodically thereafter throughout the infusion. They set the IV (a tiny needle prick), and start the IV drip. The IV bag is on a wheelie-stand, so you can wheel to the bathroom as frequent as is needed. It is a long wait for the IV drip, typically 2.5-3 hours, so bring activities to keep her busy (books, games, etc.). They often offer you drinks and snacks while you wait (bring safe foods/drinks if she has any food intolerance/concerns). They remove the IV, put a bandaid on, and you are sent on your way. Again, some folks are tired in the hours after the infusion so cannot hurt to have the remainder of the day to relax. Keep an eye on the infusion site for 48-hours afterwards, look for rashes etc.

Thanks a million guys-that all helps to put my mind at ease. The pharmacist told me today that Infliximab seems to be what a lot of kids are put on, rather than Methotrexate, due to the latter’s side effects.

My girl is treated in a children’s hospital but I’m not sure if the “infusions unit” deals with children suffering all illnesses or what. I’ll ask locally about that.

All of these comments have really helped me to get my head around bringing her for infusions. When it was first suggested on Monday, I was very upset-it seems a big step up from taking a small dose of medicine at night. Anyway, I’m now more mentally prepared for the infusions. I hear that kids start to flourish, grow & thrive again once they’re in solid maintenance treatment so I’m looking forward to seeing my little girl getting a glow back in her cheeks, please God!

No doubt I’ll be back with more questions sooner or later, but THANK YOU for now 😘

Hi Guys,

Just thought I’d give you an update! My girl went on to weekly MTX jabs. It was v difficult to start with due to fear of needles, but she is now, 10 weeks later, allowing us give the jab without too much fuss.

She gets what we call “MTX hangover”, so the day after, she is pale, tired & nauseous. She’ll still come out & about but I know she feels like crap. Her bloods have all been good & show no signs of inflammation. However, I don’t feel she’s in full remission. She is still pale, maintaining weight (mostly due to 2 Ensure drinks daily I think), has only grown 1.5cm since August (at least it’s something!) & I can see her healing powers are v low, such as if she cuts her knee, it takes way longer than it should to heel. She herself is coping v well, has missed school only for medical appts & continues 5 hobbies each week! I have come to terms with the diagnosis too, so life has come back to “normal”.

We had our 2nd GI consultant review on Tuesday last. I told him my fears that inflammation is still simmering. He ordered a pile of additional bloods (6 vials) & said he’d review them & revert but next step would be remicade with MTX & taper off MTX once remicade kicks in.

So, although my little girl has been doing well, we’re still in the process of getting her into full remission rather than being there already. My husband thought I over-emphasized the negatives still going on for her when at the GI visit & I did feel a little like I was squealing on my own child, if you get me??? The foreseeable reaction from a GI consultat is obviously going to be more meds. If she was older she could decide whether how she currently feels is good enough. The problem is, she so used to feeling wrotten, she has a low bar on what feeling good is like & she doesn’t fully grasp that everyone else (non-Crohn’s people) feel well most of the time. I guess the GI consultant will decide for us once he reviews the bloods though.

Lastly, over Christmas, Orla was dancing barefoot in the kitchen with her sisters & twisted her foot some way & broke her middle toe in two places. We attended a different hospital who had no note of her Crohn’s & I asked at that appt if it could be related & after a lot of waffle, I got the impression the orthopedic Guys only had a vague grasp of Crohn’s & hadn’t a clue. As it was only a toe, it didn’t really seem to matter either. What do any of you think? I’m paranoid now that it could have impacted her bone density or something?

Thanks 😎

Hi Monte,

Thanks a mil for your advice. That’s very reassuring regarding the toe. No one ever explained why it’s unlikely to be unrelated & she definately hasn’t had steroids.

Re MTX, she had bloods in her stools up to 3 wks ago & we did 2 wks of meslamine suppositories which seemed to clear it. Drs said it takes a few weeks/months to get optimum levels of MTX into her system & once levels reached, MTX would maintain it. She’s on wk 6 of it now. The other indicator is that she’s only grown 1.2 cms since August, but again, maybe the MTX hasn’t been allowed to work for long enough yet? Finally, I have the impression that she gets more tired, the nearer we are to her next jab, but easily that could also just be from getting tired as the school/hobby week progresses. She is definately at her best on Sundays. She has her jabs on Fri evenings, is tired & nauseous on Saturdays & so Sunday’s are her best days 😎 Anyway, it seems the consultant isn’t go to rush the decision.

Is remicade a bad option for a younger child or is your reticence on the basis that we’ve to try to save the stronger meds for when she really needs them? I fearful if she loses out on growth now, is that lost growth forever or will she regain the height once she’s in full remission? Like, theoretically if you had identical twins, one who continued growing as normal & one with Crohn’s with stalled growth, would they ultimately end up the same height?

I realise we’re very lucky, Orla has been in very good form & in general has coped very well with the treatment. She said yesterday, “Do you remember you used to be crying talking to the doctors all the time but now it’s no big deal I have Crohn’s?”. Please God it’ll stay that way 😍

Glad she's doing better, and you're on the right path with her treatment! It seems like good due diligence and caution to verify her blood work. Like all things, sometimes adding another month on the current treatment is all it takes to reach a remission. At other times adding another med is necessary. To that end, I'd wait for the labwork and then see where you're at.

As far as her height and quality of life as a whole, aim for a remission. When she's in a remission she'll be healthiest, happiest, and will grow in tandem with her peers (like a weed no doubt). When flaring badly, her growth might be impacted, and you therefore want to limit flares in both severity and duration. We strive to make our remissions long, and our flares as infrequent, mild, and short as is possible. She might regain a percentage of the lost growth during her rebound.

I'd only blame the bone breakage on her illness, if she's been on prednisone (or IV solumedrol) long-term, or cumulatively for a long time. In the end, kids will be kids and sometimes something sudden and unexpected breaks a bone during otherwise innocent play all by accident.

I would not hesitate putting her on remicade, if MTX isn't enough. It's premature to say whether remi is necessary or not. I do not believe there are any worries with putting a child on remi, but certainly a good conversation to have with her pediatric gasteroenteroligist though!