Crohn's Disease Forum » Your Story » Need Advice/My first time here!

04-20-2014, 02:28 PM   #1
Chase's Mom
Join Date: Apr 2014
Need Advice/My first time here!

Is extreme fatigue a common side effect after remicade? Our Dr. says it is not. However, our 14 yr. old son barely has the energy to do anything. He has had 3 remicade infusions and is due for the 4th at the end of the month. He has CD. Here is a brief background: He was diagnosed in Aug. 2011 and was doing very well on 6MPs until Dec. 2013. He was put on prednisone to hold him over through the holidays until the new year at which time he began remicade (Jan. 2014) Just this week he has added in methotrexate. This is not so much for the Crohns as for the prevention of the development of antibodies, the Dr. told us. He has been extremely fatigued ever since the start of the remicade (and weaning from the prednisone). He is also becoming increasingly depressed. Is such intense fatigue a common side effect? Our Dr. seems dismissive of this. This is heart breaking to see as this is a kid who LOVES learning/school(rare, I know) and its hard for him to go and get his h.w work done (most upsetting for him). We just want him to feel well. Any insight would be so appreciated.
04-20-2014, 03:16 PM   #2
theOcean's Avatar
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Location: Toronto, ON, Canada

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Personally I would wonder if his fatigue has more to do with his weaning off of prednisone than the Remicade. I was on it for a little while, and I never experienced fatigue with it. Instead I would be much more concerned that it's from his Crohn's, and the depression is something I would relate to that as well if he's so sick.

What are his current symptoms?
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-20-2014, 06:58 PM   #3
Chase's Mom
Join Date: Apr 2014
Thank you for your speedy reply. We thought the same initially but he has been completely off the steroids for quite awhile now. His inflammation markers are not elevated so we also know its not from the disease itself. We did begin to wonder if the fact that he isn't feeling better as fast as he would like has led him to be somewhat depressed. This could result in tiredness and perhaps that is true BUT still this is extreme. He is so unhappy about it and wonders why he feels this way. I guess you haven't experienced this from the treatment? I was kinda hoping as that would be an easy explanation.
04-20-2014, 07:10 PM   #4
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Location: Ontario

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Hi and welcome. Sorry your son is going through this. If meds and physical reasons for extreme fatigue have been ruled out depression can cause extreme fatigue. I'd talk to the doc about it. There is treatment available. IBD and depression and anxiety do go hand in hand for many people. I hope he gets feeling better soon.
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Ileostomy at 19

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04-20-2014, 07:39 PM   #5
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Location: Georgia

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My son was on remicade for 2 years, he didnt experience severe fatigue after his infusions. Six months in we added mtx but he still really didn't have any side effects. There were times he would sleep on the way home but I think that was due more to the benedryl given before infusion.

C does become severely fatigued during active disease and also when he has had vitamin d deficiency and iron deficiency anemia associated with his CD. Blood work had never been an indicator of C's disease activity so he has a fecal calprotectin stool test every so often.

I hope you are able to find some answers for your son. I'm going to tag some other parents who have children on remicade, Tesscorm, my little penguin, maya142, and mehita. Their kids are on remicade or have been in the past and can maybe give you their experiences.
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
04-20-2014, 07:54 PM   #6
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Hi Chase's Mom
My daughter has been on both Remicade and Humira and is 17. She did get tired after her Remicade infusions - it would take about a day for her to bounce back, but it wasn't like the fatigue you're describing.

Severe fatigue, in our experience, is associated with uncontrolled disease. When M is flaring she gets so tired that forget going to school, she can barely walk for twenty minutes at a time. When Remicade and methotrexate were working for M, she was able to go to school, ride her bike, play soccer etc without getting tired. Right now, she's flaring and she's about as exhausted as your son is. Her bloodwork also never shows inflammation so we don't really go by it. In our experience (M has been on Remicade 3 separate times!) it takes 2-3 infusions before M is feeling better, but with some kids it could take longer. It might be that it'll take a little longer before your son starts feeling better.

He also might have vitamin deficiencies - I'm going to tag DustyKat, she'll be able to tell you more.

M sees a therapist who deals with kids with chronic illness and works in the IBD clinic at our Children's Hospital. It has been very helpful for her.
Good luck!
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
04-20-2014, 08:05 PM   #7
Chase's Mom
Join Date: Apr 2014
So interesting. Thank you all. I've been wondering if something else is going on that wouldn't necessarily show up on the typically requested blood work. Any suggestions as to what else to request? Dr. said lab work looked "good" Hmmmm...
04-20-2014, 08:14 PM   #8
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Hi Chase's Mom, welcome to the forum (but, am sorry it's your son's illness that brought you here).

My son is on remicade and has never experienced fatigue from remicade. I would also question either if your son is in remission or if he is deficient in certain vitamins/minerals (such as iron).

Bloodwork is not always indicative of active disease... how does his bloodwork compare to when he was diagnosed (and in an active flare)? Did his bloodwork indicate active disease then? As Clash mentioned, an FC test (fecal calprotectin) may help identify if there is active disease.

You could request a Vitamin Panel (blood test to test for vitamin levels) to identify any deficiences and also an Iron Panel (I think that's what it's called) to check for anemia. Please note that active inflammation can influence iron results and there are results other than just HGB to consider. I don't understand it all well enough to give you a clear explanation of the relevance between the different iron tests but this article will give you some info.

Was fatigue a symptom of your son's pre-diagnosis? Is he having any other symptoms?

As far as depression, there are a number of kids here who have seen a therapist and found it helped. It's also understandable that your son may simply be upset/depressed because he isn't feeling well and this may improve once his symptoms/fatigue go away.

Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-20-2014, 08:14 PM   #9
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Sorry if you posted and I missed but B12, Vit D, and iron should all be checked.
04-20-2014, 08:34 PM   #10
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As far as depression goes, I have experienced it but it's a separate thing from my Crohn's. I've actively been seeing a psychiatrist since January 2011, even when I'm not stressed or upset -- and it's one of the healthiest decisions I've ever made for myself. My psychiatrist has helped me through a lot, and the fact that she has medical knowledge and expertise has also been really helpful because I could talk to her about my illness and medications as well.
04-20-2014, 08:56 PM   #11
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Hi Chase's mom,
Sorry to hear that you are all going through a rough time. My son who is 18 has had 3 infusions from remicade and has experienced some fatigue. It really is hard to know whether it is from the disease itself, the meds, vitamin deficiency or mood related.
As a therapist and a mom, I think it could be helpful for him to speak to someone to discuss the impact of illness etc.. So much happens to teens both physically and emotionally even without illness and to have to deal with crohns on top of everything can be quite heavy for a teen... Loosing control of one's body can be quite a "loss".
Good luck! I hope things get better soon.
04-20-2014, 09:48 PM   #12
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Hi Chase's mom,
My son is also 14 and started remicade in January as well. He is bouncing off the walls right after his infusion and then crashes hard early evening and is a little more tired then usual the following day but fine after that.
I agree with everyone else about getting vitamin D, B12, magnesium levels checked if he is not showing anemia which would be my first thought with fatigue.
Having someone to talk to would also be helpful for the depression, there are also facebook pages and for kids to connect with other kids going through the same thing.
As Clash and Tesscorm mentioned blood work does not always necessarily indicate disease activity. My son is a perfect example of this and has become a running joke with the GI. He always says I'll call you with results even though we know they will be normal. Fecal calprotectin however has shown for us that inflammation was present even when blood was normal and results of the fecal calprotectin were backed up by an MRE, massive inflammation at TI and in small intestine.
We don't have experience of MTX in conjunction with remicade but my son was on it for a short time a couple of years ago and he did experience fatigue but usually on for a day or so after dosage.
Hope things improve and if he ever wants to talk to someone his age we can certainly try and contact him with my son but I know how teen boys can be.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-20-2014, 09:50 PM   #13
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My 14 y.o. hasn't experienced fatigue from Remicade, but is noticeably more tired around weeks six and seven in his infusion cycle, which I think indicates that he's about due for his next one. That being said, maybe the Remicade just hasn't kicked in fully yet for your son. You can ask for the antibody test next time and that will tell you how much Remicade is in his system and if he's building antibodies. Is this his first eight week stretch?

And I second the other suggestions in asking for a vitamin panel. Iron, Vit D etc. the fatigue could be due to so many things. Knowing his vit levels can rule some of them out.

Has puberty kicked in yet? Simply being a growing teenager is going to bring on fatigue as well. I'm not saying that's the answer, just that it's probably also contributing to the issue.

Keep us posted...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-20-2014, 11:39 PM   #14
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Thanks for the tag Maya.

Hi Chaseís Mom and

I am so very sorry to hear about your lad and that you have to find your way here.

You have been given fab advice so there isnít much for me add. So I will just ask a couple questions to see if things can be narrowed down a bit.

Where is your sonís Crohnís located?
If he has small bowel involvement, and particularly Terminal Ileum, then he has a much greater risk of having malabsorption and so certain vitamin and mineral deficiencies. The ones involved and mentioned previously (B12, Vit D, Magnesium and Zinc) will certainly impact on fatigue and cognition if deficient. They can also influence things like mood and depression amongst a raft of other things.

Has bleeding been a symptom for him?
This can cause anaemia as can a deficiency in B12 and Folate (B9) (again, more likely with small bowel disease) and anaemia will also cause fatigue.

Please ensure that bloods are done for Iron Stores along with B12 and Folate as well as Vit D, Magnesium and Zinc.

Have a read through through the list of Vitamins and Minerals Deficiencies we have in the wiki. It is very informative and you may be able to pick out some symptoms your son is experiencing. Click on the link belowÖ

Vitamin and MIneral Deficiencies

What were your sonís symptoms that prompted a change of medication?

Have those symptoms abated with the Remicade?

If he has small bowel disease have they ruled out scar tissue being present?
Scar tissue will return normal results for most if not all routine bloods and will also return normal faecal calprotectin results. However scar tissue in the small bowel will render the area of bowel affected incapable of any normal function. It will be inflexible and hardened and so will not allow the exchange of nutrients from the bowel into the body. Another reason to get the bloods suggested done.

Just as a side note, inflammation will also stop the exchange of nutrients from the bowel into the body.

Good luck mum and welcome aboard.

Dusty. xxx
Mum of 2 kids with Crohn's.

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