20 y/o son with Crohn’s. Should he switch to Humira?

[madrecubana]

20 y/o son with Crohn’s. Should he switch to Humira?

I have a 20 year old son who was diagnosed with Crohns (in the small bowel) about 7 years ago. No flare ups for the last 6.5 years since on regimen of Pentasa. However, recent blood work and wireless capsule study shows a lot of inflammation in different pockets of the small intestine. Doctor recommends changing treatment to Humira. Very concerned with risks and possible side effects. My son is 6 ft tall, 180 lbs. seems healthy, energetic and says he feels great - however, there may be symptoms he is not sharing. The blood work and capsule study show otherwise so changing to Humira is a preventitive effort. Any thoughts or guidance anyone can share?? I don't know if I should seek a 2nd opinion before changing treatments.

 

[Chester31]

Hi Madrecubana,
I don't really have any advice but we are in a similar situation. My son was diagnosed almost 2 years ago. He's been on Pentasa plus a few rounds of EEN since then and has no obvious symptoms apart from an inability to gain weight. Always says he feels 'fine'! I think we buried our heads in the sand for quite some time thinking that everything was ok due to his lack of symptoms but a recent barium follow through showed inflammation and strictures in his small bowel. He tried Aza but had to stop and is now on 6mp but white blood count is again too low. He is due to start Humira on Tuesday and stop the 6mp once the Humira kicks in. The possible side effects of all these medications terrify me but having seen his small bowel X-rays I know that he can't continue as he is and we have to get on top of the inflammation. Good luck with whatever you decide.

 

[crohnsinct]

Good for him that he has such a good run with Pentasa. It is typically a lower level drug and not very effective for Crohns.

I think the fact that the disease continues to do damage despite all outward signs saying things are good, is a good indicator that for your son the disease is sneaky and might be harder to monitor. In that case, for me personally, I would want to hit it with the drug with the best chance of controlling it. If the doc says that is Humira then that is what I would take.

No drug is without risk but honestly, my daughter is on Remicade and I find that risk profile a lot easer to stomach than azathioprine or methotrexate which would be the next step for your son if the you wanted to approach this with stepping up.

If a second opinion will help you with your decision then I say go for it. Do whatever you need to do to be comfortable and confident with your choice. We research the heck out of a new car so why not the next drug?

The risks may be hard to come to terms with but so is unmanaged disease and the damage it does. In a way I am lucky because I saw what it could do to my older daughter so it made taking the drugs easier. However, my younger daughter is less symptomatic and it does make it hard. I just try to remember what O was like at diagnosis.

Good luck with your decision!

 

[Mehita]

My son did Pentasa for almost two years, but as time went on, things were getting worse on the inside. He ended up with inflammation that built up and subsided so many times that it caused a scar tissue stricture that he had to have removed surgically at the age of 12. Not fun.

Knowing what I know now, I wish he would have been started on biologics sooner. My son has been on Remicade for the last 15 months and it's been the best thing ever. I can't speak to Humira other than many folks here will tell you it hurts like the dickens, but we've never had any issues or side effects with Remicade.

With as much disease activity as your son has going on, I'd be concerned. You don't want to get to a point where you regret not starting something sooner. I know it's hard to treat something that you can't see, but it sounds like he needs a change.

Keep us posted... and good luck!

 

[Maya142]

There are several parents here with kids who are asymptomatic. Tagging Clash and Jmrogers4.

My daughters have been on biologics for years and have honestly had no real side effects. No increase in infections or anything like that. And 8 months after being on Remicade, my younger daughter's scopes showed that inflammation in her colon was gone and the inflammation in her TI was much, much better. I agonized over biologics for both my girls and I can honestly say I have never regretted putting either of them on Remicade/Humira. In fact, I really wish I had done it sooner.

 

[madrecubana]

Thank you all for your guidance and words of encouragement. Its so comforting to know we are not alone in this. I am 99.9% sure we are proceeding with the switch to Humira ....i need to make sure my son understands how important it is to keep on top of meds. I have been reading a lot on this site and it sounds like the injections are a but painful but nothing compared to having to undergo surgery if not treated appropriately. Thank you again for taking time to respond and offer your thoughts. Hugs.

 

[Maya142]

The injections are painful. We iced before and did them while watching TV (worked as a distraction). Also let the shot warm up to room temperature. We used the pen (autoinjector) because it's convenient and my daughters didn't want to see the needle, but people say the syringe is less painful because you can control the rate of the injection.

Tagging my little penguin, she adds lidocaine to the shot to make it less painful for her son.

 

[Clash]

My son is 18 and started Humira last Sunday, after 2.5 years on remicade. He said the shots were painful(the first loading dose is 4 shots) but not so much that he would be non compliant. He thinks maintenance will be a bit easier since it is only one shot. He uses the autoinjector as well.

Humira provides you with an on call nurse to answer questions and a training kit and nurse who can come to your house for the injection training. They also provide a treatment journal to record schedule and so forth in.

 

[Maya142]

I agree, I have a 21 year old in college who does find them painful but never misses a shot. They were much harder to deal with when my daughters were younger (13-14).

If he is in college, you can generally have a nurse at the health center do his shots for him if he doesn't want to inject himself. The autoinjector does make it very easy though - it's like a big pen and you just push a button.

 

[TryingDiets]

Have you had any luck with diet? I was diagnosed 2 years ago and quickly tried a bunch of diets to see if that would work before trying the meds.

This Specific Carbohydrate Diet has worked very well for me. I have been symptom free for nearly a two years. I know it doesn't work for everyone, but it may be worth a shot before going to the next level of meds. It would be tough for a 20 y/o, but it was worth sticking with it for me.

Maybe even in tandem with new meds. Can't hurt.

 

[xmdmom]

No advice. It's a difficult decision especially when he feels well and is of a good weight. On the other hand, it's apparent that Crohn's can advance without obvious symptoms.

My 21 year old started Remicade this fall and it seems to be working. That was a hard decision for us and he was 5'11.5' and 128 lb, anemic, tired but otherwise well. His MRI showed narrowing in the small intestine- that's when we decided to take the leap.

Do you know why they recommended humira vs remicade? Does anyone know their comparative efficacy?

Wishing your son all the best!

 

[my little penguin]

My 11 is on Humira
He started it at age 9 after reacting to remicade .
It is painful for him but we add lidocaine to the Humira syringe which helps a lot .
It takes a while to work but DS's scopes have been pristine on biologics

 

[Jmrogers4]

Sorry I missed the tag. Yes asymptomatic son here. Labs always in normal ranges (even when he had a MRSA infection). We went for 4 years thinking that he was well and in remission for the most part. He didn't really grow, weight was a huge issue which was really our only clue that something wasn't right, that we were missing something. If he would have been passed the growth stage I'm not sure we would have known that his current medication wasn't doing the job until it was at surgery stage most likely. A fecal calprotectin gave us some idea but it was only slightly elevated and that along with lack of growth led us to investigate further. An MRE showed lots of inflammation in the small intestine. He has been on remicade for just over a year and I can say he is truly in remission now.
We've talked about what we do to check in the future. The current plan is fecal calprotectin and most likely pill cam in a couple of years to check. We also know even though he is always within normal levels I have kept a spreadsheet of his labs and know what levels are normal for him and whats not. For example ESR 6-7 is normal, ESR 9-10 is not and most likely inflammation is present as has been confirmed with other testing.
I was extremely worried about switching to biologics and dragged my feet we were given the choice of humira or remicade and my son picked remicade which has been a great choice for him. He goes every 8 weeks, misses 1/2 day of school and doesn't think about his crohn's otherwise. It has allowed him to live a normal teenage life for the first time. He was diagnosed 5 years ago today.

 

[Tesscorm]

Another asymptomatic son here... my son was on supplemental enteral nutrition only as a treatment for almost two years, it put him into clinical remission (no outward symptoms) but MRE's continued to show some inflammation. Upon transfer from a ped to adult GI, his new GI was adamant that the simmering inflammation would eventually cause permanent damage requiring surgery and recommended remicade asap (or humira). But, even hearing and seeing this, it was very hard to accept or make that decision because he looked and felt so well. :ywow: I certainly considered alternatives but, in the end, my son felt strongly that the risks of undertreated crohns were greater than the low risks of the meds; as such, we moved ahead with remicade two years ago.

He has had no issues. He goes for his infusions every six weeks and, as Jacqui said, barely thinks of crohns otherwise.

One suggestion... why my son was going to the caribbean, we ran some tests to see if he required any booster shots. It was at this time that we found his immunity to mumps was low. Unfortunately, as he was already on remicade by this time (can't have a live vaccines while on biologics), he has been unable to have the MMR vaccine/booster. ?As your son has not started on a biologic yet, I would suggest that you request his immune levels be tested and administer any necessary vaccines now (before starting humira).

Good luck!