? 18 year old on Humira - need advice

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

B

BoyMama2000

Joined
Sep 3, 2011
Messages
284
My son was diagnosed with Crohn's disease at age 13. He is now 18 and a freshman in college. Was put on methotrexate 3 years ago and has been on Entocort a couple of times. Was originally on Pentasa but was taken off due to poor compliance.

Fecal Calprotectin and CRP's have been high for a long time. He has no pain, no diarrhea and lives a pretty normal life for someone with Crohns. He has never had blood in his stool (until 2 days ago). He had a fistula and perianal abscess 3.5 years ago that was awful and when he had a fistulotomy and healed well. Other than that, his only symptoms were lack of growth that improved after diagnosis and treatment.

He has his first set of finals in 2 days and told me today he started to have blood in his stool, they are soft and about 2 a day. This is the first time this has ever happened. We really hesitate to escalate to Humira or Remicade because he is a young man and in the highest risk category for hepatosplenic t-cell lymphoma. I just got an FDA report and there have been 82 cases with Remi and 17 with Humira in the past 5 years. Most in his age group and that are male.

We are seeing new adult GI in 10 days. Is there something we should do in the meantime? He has never been on predinisone (just Entocort twice). Should we try that first? Docs have said to go on Humira but we are just so leary. We know the risk is very low but given his age and sex and level of function, it is so hard to take on any risk of this fatal disease. We had also wanted to ask for a set of scopes before deciding but need to see the new doctor first and now I worry that we need to get the stools under control. He comes home in 3 days for 5 weeks and we see the doctor in 11 days.

Thanks for any advice.
 
Hi and welcome!
Check out the parent's forum. Many of us have been in your shoes and hearing from parents might help you make your decision. It is definitely a tough decision.

Before putting my daughters on biologics, I agonized and agonized for days. I was so worried about the cancer risk. But I was also worried about having a child who was in pain all the time. A child who had a disease that was progressing.
Ultimately, we decided to go forward with Humira. It was the best decision we ever made. My daughter suddenly became a normal kid again!

Then when my second daughter was diagnosed, I agonized AGAIN, even though I knew the benefits. She suffered for months on other meds and finally, we had to go to biologics to prevent disease progression. With her, I really regret not putting on her biologics earlier because her disease has been harder to control because we did not treat her aggressively early. But I have never regretted putting either of the girls on biologics - in fact, I am grateful they exist!

It sounds like your son's Crohn's is not under control. He clearly has had inflammation for quite a while, even on MTX, considering his CRP and FC have remained high. Over time, inflammation will lead to scar tissue, strictures, abscesses and fistulae (as you have already found out). He may not have many symptoms, but that does not mean the disease is not progressing.

There are several parents whose children have been completely asymptomatic and have needed surgery because the inflammation caused permanent damage.

The risks of biologics are scary, but they are tiny risks. The risk of complications from chronic, uncontrolled inflammation is much higher.

In the 8 years my kids have been on biologics, we have had no side effects. No increase in infections or anything like that. They are monitored carefully by their rheumatologists and GI.

In fact, we have had many more issues with drugs like Methotrexate and Imuran!

Here is a great presentation that talks about the risks and benefits of these drugs:
http://programs.rmei.com/CCFA139VL/

I will tag some other parents - many of us have teenagers on these meds:
my little penguin
Tesscorm
Clash
crohnsinct
Mehita
Jmrogers4

Good luck!
 
It's so hard we agonized over the decision for a long time (years). My son has been on remicade for the last 3 years and what a difference it has made. He is in his senior year of high school and really has no issues with his Crohn's whatsoever.
Yes there is a tiny increased risk but I allow him to take risks every day that I don't even really think about, driving a car, playing sports. Why? It comes down to a quality of life as much as I would like to keep him in a bubble and make sure nothing ever happens to him I know that is not possible. Remicade has given him his life back, he looks forward to going to college next year and just living his life.
He was very nervous about starting remicade but says he didn't even realize he felt as bad as he did until he felt as good as he did on remicade. Like your son his biggest issues have been growth and appetite and while his labs have always been within the normal range but have found out that he still had inflammation (in small intestine not able to see with scopes) through an MRE which is why we started remicade. His ESR was about 8-9 (normal 0-15) on Remicade it is 4-5, which seems to be his magic number of remission.
Hope your son gets back to remission soon. Before we started remicade, he was on Imuran and we tried a round of prednisone and a round of EEN to see if we could stop the flare but unfortunately it didn't work but I don't think it would hurt to give it a try if the GI is on board.
Just wanted to say for us even with the risks biologics was the right choice to see him so happy and healthy and living his life to the fullest. Under treated Crohn's can cause a whole host of complications (some life threatening) in and of itself. For us it was getting to remission which finally made the choice easier to make.
 
Thanks so much to both of you for your input. I know it is such a hard decision and would be easier to make if didn't feel normal although I do know what you mean by the fact that their idea of normal may not be accurate! We will either start Humira or possibly Entyvio since he is now 18 and will be seeing the adult GI IBD director at our local university. Entyvio intrigues me because it is more targeted to the GI tract but also is new so we then don't know many of the risks we already know about with Humira or Remicade.

I will post back what we decide. We both realize that he is not under control and something needs to be done. The text about bloody stools for the first time after having been diagnosed 5 years ago was a good wake up call. He has his finals for his first quarter of college tomorrow and Tuesday...I hope this doesn't escalate and then we can deal with it when he is home from school. I imagine the stress of finals and the lifestyle of college isn't helping either.

Again, I truly, truly, appreciate your input.
 
By the way Jacqui, we were just in Boise 3 weeks ago for a wedding. We lived in Moscow for 8 years and went to a former baby-sitter's wedding there. We love Idaho...we also love Denver where we live now. You will be glad you have him under control when you send him off to college, it was not a good feeling knowing we didn't have a good plan in place. This news from him was certainly not shocking given his numbers.
 
Realize entivyio can take up to a year or more to wrk from all that I have read
T cell lymphoma is a risk when
The patient is a young male
Is taking biologics
And taking either imuran or 6-mp
Not mtx or biologics by themsselves

Losing intestine due to scarring /strictures fistulas has its own risks which can also be deadly.
Ds started remicade at age 8- and quickly moved to humira due to an allergic reaction
He has been on humira ever since and soon will be 13 .
No issues just healthy bowels
I wish there were easier choices
But it's better than having no choices
A few years ago there was pred and more pred which doesn't work long term and has its own risks
 
I would also ask if Entyvio works for fistulizing Crohn's. I think Remicade has the best track record for fistulae (but Humira works too). Not sure about Entyvio. It does take longer to work and both Remicade/Humira have better track records.
 
I'm one of the parents tagged by Maya. My kiddo was dxed at 15 now 20. He hasn't been in remission since dx.

Up until a month ago he had spent over 3+ years asymptomatic. Still, the disease was raging on and he eventually required surgery.

He's 2+ years out from small bowel resection(location of CD pre surgery was just the terminal ileum). Six months after surgery(while on 2nd biologic and mtx), a colonoscopy showed that the disease was now present from surgical site (anastomosis), throughout colon and rectum. Still, no symptoms. We're on our 3rd biologic.

I did fear the biologics rare side effects but now I fear that none of them will slow this disease down.

Recently, he has begun to have symptoms. We know he hasn't active disease but we aren't sure if these symptoms may be the result of the removal of his ileocecal valve during surgery.
 
Another mom who agonized and hated to make the decision! :( But, my son was also asymptomatic yet MREs continued to show inflammation. His only treatment had been EN (exclusive and supplemental -- easy for a mom to accept ;) ) but, upon transfer to his adult GI, the new GI was adamant that leaving simmering inflammation would lead to problems and recommended remicade. It was difficult to come to terms with it when he looked and felt so well.

While I can't say we've actually 'seen' any change (unlike Jacqui's Jack, S has never said he feels 'better' now) but subsequent scopes and MREs show clear improvement and he has been in remission since starting remicade (4 years ago??). And I do know we haven't had to deal with crohns-related problems. I haven't seen many side effects, if any. He's been exposed to lots of colds, strep, etc at school and, for the most part, has seemed to be okay. Last year, he did have a number of respiratory infections... but, who knows??? Just a 'bad' year? Remicade?? No flu shot last year??

A comment re remicade vs humira... our GI said he preferred remicade for patients S's age because there was clearer compliance - infusion and dosage done by nurses, no chance that injection is delayed/forgotten by a day or so, no chance that dosage is incomplete (I suppose, some spills??), more convenient/consistent labwork... upside to humira/entyvio is that they are portable and quicker...


Also, do you have a link to the FDA report? Anything I've read matches up with MLP's description of risks.


Hugs... not easy decisions to make. :(
 
Glad you enjoyed your visit and if I remember we had fantastic weather then. Moscow is on the list for 3rd choice for college. We did college visit up there earlier, he liked it but it was farthest away from skiing (priorities, ya know? UGH!) I wouldn't mind if he went to U of I it's so pretty in Moscow.
That's what I'm worried about in College is completely different environment and stress will set something off. His GI has already said he would/can continue to see him through college so I'm thinking we'll stick with him for the time being.
I'll be interested to hear what you decide.
 
Tess - I don't have the link to the FDA report because they send you all paper that you have to go through. When I get the breakdown I am paying for, it should be in disc form and I will post what I learn. The report was for all adverse events reported to them from Americans on Remicade and Humira. The breakdown will give me age, sex, other meds they were taking and the date it was reported. My son's pedi GI preferred Remi for the same reasons but since my son is in college and plans to go overseas his junior year, Humira will be better. To encourage compliance, I am going to work with student health to give him the injections. He never injected himself with metho so he wants someone else to do it anyway. If he does entyvio, it is a 30 minute infusion. I will let you know how it goes next Tuesday and what we decide. I know he liked the idea of the injection over infusions. It will be an interesting to see what the adult IBD doctor thinks. Thanks for your feedback...it helps a lot to hear from the parent of another symptom free kid.

Jacqui - My husband worked for U of I for almost 9 years. It is a wonderful place and school. If he does go there, I still have a lot of friends and contacts with the hospital in Moscow where I worked for 8 years, so I may be able to help you connect with care. I am not sure he could do infusions there but Spokane is 80-90 minutes north. I was a bit relieved that my son with Crohn's is only 45 minutes away if something happens but would have been fine sending him out of state like his older brother. His older brother has some medical things too and we just set him up with a specialist in Tucson where he is in college. It works either way with some advanced planning. The schools disability office is also a great resource and you will want to contact them when he decides where to go! It is so fun to watch them grow in college!
 
If he does decide to try Humira, you will need a note from your GI to get the health center to do it (which should be pretty easy). You also might want to think about where you will get Humira delivered. If he lives in a dorm and all his mail goes to the mail center, then getting it delivered to the health center directly is probably the best option (so it can stay cold). At most schools, the mail that goes to the mail center takes a while to get processed.

I'm sure you know this by now, but Humira is also a painful shot. It's not the needle that hurts, the medicine really burns. Some kids absolutely hate it, others deal with it. I know your son is technically an adult now (but they're really still kids at 18 ;) ) and will probably be ok, but I did want to let you know!

My girls were both on it as young teenagers (13-15) and hated it. But since it really helped, they did get used to it. We used ice before the shot and they did the shot while watching TV so they were distracted. We started off with the pen, which REALLY hurts but my older daughter recently switched to the syringe (based on advice from parents here), which is much less painful.

Humira is MUCH more convenient for college students and even high schoolers, but both my girls actually preferred Remicade. They both liked the chance to watch TV and miss school and in between infusions, they could just forget about being sick, vs. the weekly shot (Humira can be given every other week or every week).

Good luck!! Let us know what you decide.
 
FWIW, H says the shots don't really hurt anymore. I wonder if we're getting the new formula?
I hope you see quick improvement on the biologics. As a mom of another asymptomatic kid, I can tell you that in our experience when any symptoms do arise it is a huge red flag. Med changes are stressful but good choice!
 
Could be! They told us that it would be distributed once AbbVie had run out of the old formulation. In the US, they said it would be distributed in 2017, but it is already being used in Europe.
 
Thanks for letting me know about the letter. My son was on growth hormone injections via pen for 2.5 years daily and they were painful shots. I also dealt with the whole med deliver stuff then. We only live 45 minutes from the campus so I may have it delivered here and then plan to bring it to the health center if they will store it properly for us. When he was on HGH, we took out the pen 30 minutes early and iced and that helped. I would hope to do the syringe instead of the pen because it was less painful when we moved to that! I am glad to hear it may be less painful. We are also going to ask about Entyvio but one concern is that he plans to go overseas in 1.5 years when he is a Junior and I am not sure it is approved in Europe or Australia where he would want to go. We may need to have him look at placed with the right drug approvals. It will be interesting to see how things go with the new GI Tuesday. I do worry a bit about compliance with the injections if they are too painful versus doing infusions every 8 weeks once up to to standard times. Entyvio is also infused but it is much quicker than Remicade...only 30 minutes. Thanks again for all of your advice!
 
Sounds like you are very experienced with shots and he'll have no problem! For some kids, it really is no big deal.

My daughters have not studied abroad but I did investigate it when the older one wanted to. Our GI said she'd had patients study abroad in Europe. It is harder when they are on infusions - that is much more difficult to coordinate, especially with a newer drug (though sometimes they are approved faster in Europe than here). Our rheumatologist did not think it would be possible at all for my younger daughter :( - it would just be too complex (but she has many health issues, not just IBD).

My older one also eventually decided not to go so I did not investigate it further.

If you are seeing an adult GI, you might want to ask about Stelara too. It was just approved for Crohn's but has been approved for psoriasis for years. It is 1 infusion (the loading dose) and then shots every 8 weeks. I don't know if insurance would approve it as a first biologic though since it is pretty new - he may have to try anti-TNFs first.

There are a couple of study abroad threads on the parents forum - you should check those our if he does decide to go abroad.

Good luck on Tuesday!
 
Update after seeing Doctor : We had a great experience on Tuesday meeting his adult IBD doctor and Fellow. They may need to put in on prednisone but are hoping his flare will hold enough until they do scopes on the 21st. They also are looking to make sure he doesn't have a GI infection. His blood work was mostly to be expected with high SED, CRP, low ferritin - all else normal except one thing that is odd and I left a message with the IBD nurse.....his B12 his elevated. It was 1224 pg/mL and normal is 180 - 914 pg/mL - drinks a lot of protein drinks when he works out but I don't think he takes any B12. Of course, there are some scary reasons on the web but most seem unlikely since his other liver and CBC numbers were normal. His Vit D was really good too so I am guessing his flare is still in that last 2 inches of his ileum but we will soon really know! We both really liked the idea of Stelara because it is an initial infusion and then just a shot every 8 weeks. That would be a nice plan for a college student. Thanks again for all of your guidance. If anyone has thoughts about the B12, I would love to hear them.
 
My daughter had an elevated B12 at one point. I completely panicked after looking it up online and called her GI, who said it was not a big deal and we'd re-check in a month. We did and it had gone down and was in the normal range.

Did the GI think he could get Stelara approved before trying any anti-TNFs? Just curious, since it's such a new medication (and I think more expensive than anti-TNFs).

Anyway, really glad you liked the GI and have a plan!
 
Hi Maya 142,

He said Stelara is not a new med (just new for Crohns) and has been used for psoriatic athritis for a long time and he has had good success with coverage. We will see...in the meantime, we learned he has c-diff and has been on vancomycin for 8 days. There was no change in his D so they added Pred on Tuesday so he has been on that for just 2 days now with the Vanco and scope next Wednesday the 21st. We will see the plan then. For now, we will end Vanco on Monday and stay on 40mg pred until the scope and then likely continue or taper based on the results and his symptoms. His IBD nurse said they won't start Stelara or any other biologic until they are sure his c-diff has cleared. I am hoping that the Pred starts to work soon so he can enjoy the holidays. He has no appetite right now. He has never been on this before so I have no idea how long prednisone generally takes to work.....anyone know?

I will be asking for B-12 when he needs blood drawn next....I did read somewhere that high bacterial load can cause high B12 so perhaps that is it....the internet can be so dangerous sometimes and so helpful other times!

Thanks.
 
Thought I would give an update. My son had his scope on Dec 21....it wasn't good as suspected. His disease is now throughout his colon and rectum and no longer just in the end of his terminal ileum. The prednisone is helping. He has been on it for 3.5 weeks and is back at college but it is only 45 minutes from home. He was approved to begin Stelara today but the infusion center does not have the approval yet so we can't schedule it yet. He will have the infusion and begin weaning of the 40 mg of pred by 5mg per week. He just textes that he has a stuffy nose and sore throat. Should we wait for this to pass to start Stelara if the infusion center can get him in soon? We are eager for him to wean off of the pred so would like to get started as soon as possible. Thanks for your input. We are eager to get him on a routine and get this under control!
 
You should check with his GI, but he'll probably be ok. With Remicade and other biologics (we've never done Stelara) we were told as long as they didn't have a fever, a cold/stuffy nose was ok.

Really hope Stelara works well for him, good luck!!
 
^^^ yeah that
Almost 6 years of biologics
Many stuffy noses as long as Ds doesn't have a fever
His GI is ok with him getting meds
But check with your GI ...
 
Thanks, we will check mid week if he still has a cold. Went to campus health and no strep, fever or flu which is good news! Thanks again!
 

Similar threads

B
Another biologic to be added to Humira?
Replies
1
Views
234
my little penguin
my little penguin
S
Two year old with symptoms
Replies
22
Views
3K
J100
J
P
How long on EEN before your child had solid motions again
Replies
5
Views
640
padrach3
P
Sea_Star
Hyrimoz Biosimilar?
Replies
3
Views
620
dreamintwilight
dreamintwilight
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin

Latest posts

Back
Top