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Crohn's Disease Forum » Treatment » Humira/Adalimumab » College Freshman Starting Humira


09-02-2014, 03:50 PM   #1
nolamom
 
Join Date: Jun 2013
Location: New Orleans, Louisiana

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College Freshman Starting Humira

My daughter has been fighting this disease for a year now. We have been through two doctors at our Children's Hospital (original left to start a new hospital in Texas). Nothing actually has worked - her body was not able to process the 75 mg of Imuran. She was dropped down to 25 mg and it has staved off the disease elsewhere but not helping her where her Crohn's is present. Now a year later her calprotectin level is at 629 down from 820 in May and she is flaring and in her first week of college! She has been on 9mg of entocort since May. Now her GI here at Children's Hospital and the new GI (grown up doc at college as she calls him) both agree we need to start a biologic and agree that Humira would be easier for a college student. We are starting the process now (bloodwork, insurance approvals). I so just want her to get some relief -but I am so scared of the side effects of Humira in young adults (she's 18)!! Does anyone out there have teenage children on this and if so how are they doing? I don't see that we have much choice the meds are not working and they are saying that she is too young to operate on because her inflammation is at the terminal ileum (stricture) and involves the valve and they are afraid she will lose the valve. Both doctors agree that should be a last resort. Sorry to ramble - just a scared Mom trying to justify what we are about to do!
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nolamom

Mom to beautiful 18yr old daughter dx Crohn's 6/2013

Entecort 9mg daily
Imuran 25 mg (can't go any higher)
Folic Acid
Multi-Vitamin
Famotidine 40 mg (at bedtime)
09-03-2014, 12:13 AM   #2
Clash
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So sorry to hear of the trouble your daughter is having. My son is 17, 18 in a couple of weeks. His CD was located in his terminal ileum, at the ileocecal valve and he had microscopic inflammation at the cecum.

He had been on remicade for 2 years at different doses and frequency as well as the addition of methotrexate but still his disease simmered. C, my son, had no side effects from these meds and even though they didn't completely heal his bowels he was asymptomatic for quite awhile.

We opted for surgery next but there are several parents here who have kids on humira. I'll tag them, my little penguin, maya142, farmwife, and Brian's Mom(i think he has been on it).
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-03-2014, 10:59 AM   #3
Maya142
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Hi and welcome! Both my daughters have been on Humira (and methotrexate). My older daughter, who is a sophomore in college, has arthritis but not IBD. She has been on Humira for almost two years and is doing very well. She hasn't had any issues with getting sick in college more than regular college students. We get the shots shipped to the health center so that they are kept cold. The doctor and nurse practitioner in the health center are aware of her situation and if she's getting sick they squeeze her in very quickly to check for strep or other infections. My daughter is doing so well that she is essentially a normal college student. She did have a hard time getting to this point (missed a semester of school as a freshmen) and registering with the Office of Disabilities (although she didn't want to at the time: "but Mom I'm FINE") was very helpful.

My younger one who does have IBD and arthritis is now on Remicade but also was on Humira for two years at some point.

The shot is painful as you have probably heard, but both my daughters got used to. We ice before the shot and do it while watching TV so that they're distracted. My younger one used to get ice cream after her shots, and the older one treats herself to frozen yogurt or something at school. We also ice after the shot because it does burn for a bit. Make sure to let the shot warm up to room temperature before giving it.

Both my daughters use the Humira pen though I have heard the syringe is less painful because you can control how fast to inject Humira. They didn't want to see the needle though so we've never tried it.

I hope your daughter does well on Humira. I know how hard it is to send a child on these medications to college (where you definitely can't keep an eye on them!). Sending hugs!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-03-2014, 12:57 PM   #4
nolamom
 
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Location: New Orleans, Louisiana

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Thank you so much! This is so overwhelming but I am so glad to hear that this is "do-able" in college! We just have to have faith and pray that this works so that she can have some sort of a normal experience at school. We did register with the disability office at her school before starting and they and her professors have been wonderful to her! She's determined to get through this!
Thanks Again!
09-03-2014, 06:25 PM   #5
my little penguin
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DS is 10 and he has been on humira for over a year so very doable.
Granted it does hurt but side effect wise much better than the milder stuff.
He has also been on it all( pentasa ,6-mp, Mtx, remicade , humira by itself and now humira plus Mtx)
Good luck
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DS - -Crohn's -Stelara
09-03-2014, 08:15 PM   #6
duh panda
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Humira got me through college and into the year after. I was diagnosed at 16 with Crohn's in small and large intestine, illium (strictured) and stomach. Surgery is only an option in life/ death situations. Currently 100% steroid dependent and waiting on Entyvio after failing Cimzia this summer.

I saw the most relief since diagnosis while on Humira and stopped the medication after 2.5 years due to a decrease in effectiveness, increase in symptoms/ extra-intestinal manifestations, and reoccurring yeast and sinus infections that just wouldn't quit.

Before it started becoming less effective in managing my disease I never noticed any notable increase in infections. I tended to get strep yearly even before crohn's and would simply go into my university's clinic if I had a sore/ scratchy/ potentially strep throat and get tested - always blood test since swab had a tendency to test negative every time even with strep bacteria present.

Best advise I can give is to have faith in the medication and treatment path she and her team are pursuing - Humira was perfect for me while in college since the nearest clinic to infuse Remicade was 2 hours away.

Support her by encourage her to continue working with local doctors (also might be beneficial to set up a primary doc. depending on how the university's clinic/ medical care is set up), let professors know of any limitations or possible complications that could lead to not attending classes (e.g. fatigue after shot day). It also might be helpful to create a google calendar or document you two can share to communicate and track symptoms/ shot days/ appointments/ when she'll need to get certain tests done (I know I had to have TB done yearly), etc.

The pain from Humira pen shots are less, imo, then the needles I used for Cimzia; especially if you allow it to get to room temp. Get it right and the stinging tends to fade within 10 minutes and all's back to normal.

Remind her (but try not to nag ) that her health and well-being comes above and before any life goals whether that be GPA ambitions, finishing college in the standard 4-5 year span, participating in university clubs/ events/ socials, etc.

One thing I wish I would have taken advantage of while still on a campus was the ability to talk to psychiatrists. While it was easy (especially when i felt awful) to care for the physical side of the disease and remain focused on treatment from this angle, the mental often ran away from me and I'd find myself running head first into taking on far more then I could or should at the time - then feeling a guilty/ negative/ sense of failure. Speaking to someone can give tools to manage/ cope with chronic illness and the differences it requires one to make while in college surrounded by peers who's biggest concern is whether or not they think they could eat one more slice of pizza and pass tomorrow's exam with an energy drink fueled all nighter.
09-05-2014, 06:51 AM   #7
SupportiveMom
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Out of the two biologics approved for kids right now Humira gives you the most independence. When my daughter moved from Remicade to Humira it was great to know when she felt well we could take the needles where we needed to go to administer, not schedule around infusion dates. It is also a medication she can do on her own as many do. My kid couldn't take the pain to try on her own, but she is much younger than yours.

What is making a difference for my daughter is finally connecting with kids facing some of the same struggles. I hope she can find someone at college like an IBD buddy that they could support each other. Transitions are hard. Is she choosing the auto-injector pens or syringe?
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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09-05-2014, 04:24 PM   #8
northwesterner
 
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Interesting that you feel that Humira would be simpler for a college student than Remicade...

I'm 31 now, and started remicade when I was 20, and an undergraduate. For me, Remicade was the best option for a flexible, active lifestyle. Because the infusions are scheduled for once every two months, there really isn't much to stay on top of between the infusion cycle. Additionally, because the medication is so powerful, you can often fudge the 8 week infusion and stretch it a little bit. For many years I would only start to feel the Remicade wear off around week 11. Meanwhile, in between infusions, you can do whatever you want. Want to do a spring break trip? Go do it. Want to a one quarter study abroad? Start shifting your infusion schedule around so you do one just before you leave, and go. Going to do a summer internship? Easy, get your GI to order the infusion at a center where you'll be for the summer. And again, not much to worry about in between infusions.

Additionally, I took the time spent in the infusion center (which I could always work around my class schedule) to study. I'd bring my laptop, all my books, etc, and just pound out a bunch of work, it was productive time.

Now, at 31, I find myself back in graduate school (an MBA program). I'm on Cimzia now. Same injection schedule and handling procedures as Humira. While the medication is effective, the handling of it is extremely inconvenient for an active student. Because the medication needs full-time refrigeration, it poses quite a few logistical challenges. There are a couple of multi-week international trips (to places like, China, for instance) that I will have a very hard time traveling with the medication. Because the medication is less potent than Remicade, I can't let a dose go more than a day or two past due. This makes it difficult to adjust the dosing dates to accommodate traveling. Finally, because you get two syringes in one pack, and the pharmacy's won't send them out more than a couple of days in advance (and almost all insurance requires the use of a mail-order pharmacy for Humira/Cimzia; very rare to be able to pick it up retail), if you have your dose shipped to somewhere that is not your home town you have to then have to transport your second syringe with you (refrigerated) until you get back to where ever home is.

I've heard many people speak of the convenience of Humira/Cimzia vs. Remicade on this Forum over the years. I've lived both, and I think Remicade is so much easier to manage, especially as a student.
09-08-2014, 07:09 AM   #9
SupportiveMom
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Northwesterner, my daughter was going once a month for Remicade treatments on a slow infusion lasting 6 hrs every infusion. Once a month she had to give up a day for the appointment and then the next day was normally not well enough to do anything. The pre-meds she took knocked her out and she slept on & off during the time. No time to catch up on class work. She didn't like having to explain why 2x a month she was MIA. Humira was 15 minutes before bed and felt fine the next day for activity. We were able to schedule the needles to her schedule, not an infusion location. She had Humira 2x a month. For us 30 minutes at night a month versus 2 days a month worked better. I am glad it worked well for you. 8 weeks between might have made me feel like I could just forget between appointments but once a month felt like we were always there.

When we traveled away from home we just brought the needles with her,
09-08-2014, 10:12 AM   #10
Maya142
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I have to agree - my daughter has infusions every 4 weeks. If she ever wants to study abroad in college, we would have to figure out how to get her infusions in the country she's studying abroad. I can see how Remicade might be more convenient if you only have to go every 11 weeks. Unfortunately, that is not the norm. Most kids go every 6-8 weeks and plenty need infusions every 4-5 weeks.

Humira was also very easy for us and my daughter did the Humira shot weekly.
09-09-2014, 01:49 AM   #11
Liquid Bacon
 
Join Date: Aug 2014
Regarding the side effects: I started Humira at age 18 and it's been over 10 years now. No side effects to report as yet. My GI indicates that he hasn't seen much in terms of long term side effects from any of his patients. Humira has been a life saver for me, and you get very used to the shots. It's just routine now, and I barely feel them. Try different parts of your body; I find my upper legs the easiest.
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