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Crohn's Disease Forum » Parents of Kids with IBD » Remicade cycle & fatigue?


 
04-16-2015, 08:06 AM   #1
Mehita
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Remicade cycle & fatigue?

Tomorrow is week 7 in DS' eight week Remicade cycle and he's wiped out. Unfortunately, I'm not sure if it's Crohn's related or sports related... or both? Fatigue used to be one of his symptoms in the past. His appetite has also dropped slightly. He'll still eat everything, but he gets that "I'm full" look on his face afterward, when really, it was no more food than usual. I'm having flashbacks to the yucky days.

Is fatigue (and appetite) enough of a symptom to consider upping the Remicade cycle? He'll get labs run next Friday with his infusion, so I don't know much right now. Thus far, all his labs have been normal while on Remi. He's never had antibodies run.

For the kids who play sports, have you noticed anything like this with them?

Coach is having him play double tennis matches when the other team has more players than us (so he plays for points vs one opponent, then for "fun" against a new opponent) and this happens 3-4 times a week. After these double matches, DS is a mess. Tired, weepy, hungry (but not), dehydrated, and a complete bear to be around. Stomach and BM's are fine. I'm not sure coach knows about his Crohn's. Neither of us have said anything, but his 504 and registration paperwork all list it. I've told DS he should talk to coach and maybe request not to play double matches, at least not this week, but he doesn't want to. I'm not sure why he won't, but I do feel it has to come from him and not me.

I do wonder about anemia. He's always been borderline.

Any thoughts?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-16-2015, 09:01 AM   #2
FrozenGirl
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Hmm it does sound like ok could be an anemia thing, good idea to check labs. If that ends up fine could you ask to try a 7 week cycle once and see if it helps. It may just be the sports, that sounds like an exhausting thing to do but I would say if it doesn't go away or isn't anemia maybe try for a 7 week and see what happens.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
04-16-2015, 09:25 AM   #3
Chester31
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My son is struggling with fatigue and lack of stamina at the moment too and I'm sure it's down to anaemia. - he looks pale and wiped out. I won't let him play lacrosse at the moment and he's not arguing so I know he doesn't feel good! Waiting for ferritin result then I'm hoping his GI will recommend iron infusions. J has never discussed Crohn's with his coaches though it's in his paperwork. As he's missed the last few weeks of training and has an important match coming up I have sent a message to the coach just to let him know what's going on.
04-16-2015, 10:10 AM   #4
Maya142
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It might be worth doing the Remicade levels test to see if there's any left in his body at 8 weeks. If not, then the fatigue could really be the Remicade (or lack of it).

For us, M had symptoms around week 4 or 5 like clockwork - increased joint pain, diarrhea, stomach pain and fatigue so we knew she needed Remicade much more frequently.

It's harder to tell when it's just fatigue. You could try checking B12 and Ferritin as well as Hemoglobin.

My daughter once was very tired for months on end and we kept blaming her arthritis when in fact her Ferritin had dropped so low that when we finally figured it out she needed iron infusions!
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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
04-16-2015, 10:50 AM   #5
Jmrogers4
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In our case it was enough to decrease time between and up dosage but then that is Jack's telltale signs of all is not well.
Remind me again what dosage level is he at?
That being said with sports workouts, school, etc Jack has come home several days and immediately gone to sleep and slept the whole night through.
We had infusion on Tuesday and he is down 5 pounds. We are just watching at this point and hoping it is just workouts and school.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-16-2015, 01:10 PM   #6
Mehita
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He's at 5mg/kg, Jacqui. I should check his weight tonight. He's been hovering between 103-105 pounds since last summer.

My antennae have been up the last week, but when the Hubster told me he was going to tonight's match - 45 minutes away - "just in case", my panic alarms started up. Love my husband, but he's just not in tune with the kids like I am... so if he's sensing something...

On a positive note, I don't have that pit in my stomach feeling yet, so maybe this is nothing? I emailed the nurse asking if we can add B12 and ferritin to next week's labs.
04-16-2015, 02:12 PM   #7
Jmrogers4
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Well maybe just a bump up in dosage might be enough to get him through. I think we went to 7.5/kg every 6 weeks and have ended up at 10/kg every 8 weeks, Jack's at 125 pounds and ESR is at 5 (lowest it has ever been).
Hopefully just a time/dosage tweek will get him feeling great the entire time between infusions. But couldn't hurt to run extra labs just to be on the safe side.
I'm sure you're like me and any little thing can still send the heart racing even though they have been feeling well for quite some time. I'm trying not to worry about the weight loss and I can easily explain it away without contributing it to Crohn's but at the same time in the back of my mind a little voice says UH OH, what if.....
04-16-2015, 02:31 PM   #8
crohnsinct
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Soooo btdt!

Depends on his usual tell tale signs. But I have been there numerous times the past year with o. So much so the coach was even asking me to move infusions up. She was running and swimming really slow. I mentioned it to doc and basically got ,"they are teenagers not machines. They will get tired sometimes. Not always crohn's related". With the absence of other symptoms we just added iron studies, vit d and b12 checks to her labs at infusion. They always run inflammation markers. Guess what. Everything came back fine and she returned to normal.

Does his inflammation show in his sed rate and crp? If so, you could probably wait till those come back to shorten interval. Could also ask for a fecal cal to set your mind at ease. My ped will also do a finger stick anytime I want a little assurance. One time when o was especially sluggish she was a 10 on the finger stick. gi added iron study and she was the best she had ever been so who knows what those teen bodies are doing!

Good luck!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-17-2015, 07:22 AM   #9
Mehita
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Guess who stayed home from school today? Hoping to talk to the GI nurse and maybe bump his infusion up to earlier in the week. He's taking the ACT on Tuesday though. Do we try for Monday for his infusion? Or wait until Wed? And if we wait until Wed, do we ask for accommodations?

Jacqui, CRP is a good indicator for him. Fecal cal too, but his GI isn't a fan.

On our scale at home he weighed in at 110 last night, which means he's up 5 pounds from his last infusion two months ago, so that's good!
04-17-2015, 11:09 AM   #10
Jmrogers4
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Hoping for just a blip. We were able to get in quickly when symptoms showed up, hope you can get in and get him feeling well.

Glad he's gaining though.
04-17-2015, 02:19 PM   #11
Maya142
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Glad he's gaining, that's a great sign! It took us a while to figure out the dose M needed and the frequency. And even then, we had to change the frequency after a while (5 weeks to 4 weeks).

For testing, do you have accommodations in place already? I know for the SAT and for AP's college board has to approve accommodations months in advance. M's guidance counselor helped us deal with it.

I believe the regular accommodations (for school) they have don't necessarily apply to standardized testing - you have to apply separately. They're usually approved, it's just a process. I don't know anything about the ACT though - my girls never took it.
04-17-2015, 04:42 PM   #12
crohnsinct
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Yeah, pretty sure it is too late for test accomodations but you can run it by the guidance counselor. I know O's did all the paperwork for hers way before the testing started and she gets stop the clock testing for if she needs to use the bathroom but that is it.

Now about that Remicade....I know we all refer to 5mg per kg or 10 etc but in reality they dose with the actual vials at ml's. So, the doc really writes the orders for so many mls or whatever measurement. What this means is, if he has been gaining weight and the orders haven't changed in a while his dose could have actually slipped to below the 5mg/kg. I know this has happened to a few people here. It definitely happened to O. She was at 10mg/kg and they were dosing at something like 350ml and each infusion her mg/kg kept going down until one time it hit 7 and I asked the nurse and she explained to me what happened and said she would send a note to the doc and sure enough the doc had them add another portion of a vial etc to make up the difference.

So maybe just maybe that is what is happening here?
04-17-2015, 10:03 PM   #13
my little penguin
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I know DS has accomondations for state testing
Seperate room /proctor so he can rest /drink /bathroom or type answers etc...
Due to crohns and arthritis

I a tiny window before act /sat stuff ( few years . )
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04-17-2015, 10:24 PM   #14
Mehita
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Sorry, I should clarify. It's not the official ACT, but something they are calling "pre-ACT" that the district requires for all 9th and 10th graders.

I talked to the GI nurse (love that woman!) and they're going to do ferritin and a levels check next week. She checked his dosage and like you said crohnsinct, it might be a weight thing. She said he's on the border of getting bumped up due to weight. If he really shows up at 110 pounds on their scales, they'll adjust his next dose.

One more week. One more week. One more week.
04-17-2015, 10:35 PM   #15
Jmrogers4
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OH Big hugs, crossing fingers and toes for one more week.
Jack took the ACT Explore last year and the PSAT this year, worked with his 504 coordinator and he took the ACT in separate room (in one of the special ed classrooms that had its own bathroom) he was also on EEN at the time so was allowed his shakes and it was stop the clock. His 504 coordinator last year actually called me a couple of weeks before test to set up accommodations.
PSAT this year he had stop the clock testing for bathroom access.
04-21-2015, 07:37 AM   #16
Mehita
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DS is turning into a mess. Now he has a bad head cold, is all runny and stuffy, and his eyes are swelling up - not a lot, but it's noticeable - with clear drainage. It's too early for his allergies. If he has inflammation going on in his nose from this cold, will that skew his labs on Friday? He's still exhausted and the cold isn't helping.

Also, if he can't have NSAIDS to reduce inflammation (in his nose) what can he have? He did children's Sudafed this morning because that's all I had in the house. I don't tend to give him much in meds because it's always a pain in the butt trying to figure out if it's gluten free.

I've got a bad feeling about this all. I'm predicting a cold turned sinus infection, fever for Friday's infusion, being sent home uninfused and put on abx. Anyone want to take bets?
04-21-2015, 08:06 AM   #17
crohnsinct
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Oh no! Unsay that! No jinxing allowed!

Ginger is excellent for inflammation and especially sinuses. Do you have a juicer? You could juice some ginger and an apple. Or if there is a juice place near you, you can go in and tell them what you want. Even if you threw some ginger in a nutribullet type thing with some pineapple etc...just if you use an apple cut around the core and don't let the apple seeds go in. They are bad for you.

Oil of Wild Oregano is my other go to for sinus/cold issues. Two drops under the tongue a day.

Sending lots of healing vibes your way...the infusion must go on!
04-21-2015, 09:10 AM   #18
Maya142
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Fingers and toes crossed that doesn't happen!

We use Mucinex or Sudafed when absolutely necessary but generally don't use anything. M was told to use a saline nasal spray (over the counter) when she had a cold last fall to prevent a sinus infection because she tends to get them (and last time that meant antibiotics, CDiff from the antibiotics and then different antibiotics!).

Good luck! Really hope he can have his infusion.
04-21-2015, 09:12 AM   #19
Jmrogers4
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Oh no! Allergies in full swing here.
No No No he will be fine for Friday's infusion and everyone in my house knows what I say goes...
04-21-2015, 10:13 AM   #20
pdx
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I started using a Neilmed sinus rinse kit when I had a sinus infection while pregnant, and by using it I was able to avoid using antibiotics. It is a little weird and a little gross, but super effective for clearing out your sinuses. I still use it all the time during allergy season. You can get them at most drugstores.

Really hoping your son is feeling better soon.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-21-2015, 11:06 AM   #21
my little penguin
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If you use a nettle pot ( aka sinus rinse ) be aware of the risks associated with the type of water you use and bacteria etc building up in the "pot"
Lots of articles on it
04-21-2015, 11:30 AM   #22
pdx
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I just saw the warning from my little penguin. She is right--you want to be careful to keep things sterile if you try any sinus rinsing.

Breathing in steam can also help reduce congestion, either in the shower, or by heating a bowl of water, and breathing in the steam with a towel over your head.
04-21-2015, 11:40 AM   #23
DanceMom
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We've used Neilmed rinses (not neti pot) with my youngest with some success. They feel weird but are not difficult to do.

For A I use Benadryl when she has cold-like symptoms. It helps dry her up and at the same time keeps autoimmune issues at bay.

Hope he feels better soon!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
04-21-2015, 12:05 PM   #24
Mehita
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Thanks, everyone. I'm about to head to the pharmacy. I don't think he'd do a Neti pot, but he might do the rinse.

He started Zyrtec for his grass allergy on April 1st. Shouldn't that be helping dry him out a little?

I think the inflammation and drainage from his eyes is what's bothering him the most. I've only ever had one sinus infection. Is eye drainage common?

CIC - I do have oil of oregano, but I'm hesitant about ingestion. All the oil safety sites say to never ingest?
04-21-2015, 12:08 PM   #25
my little penguin
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Zaditor otc antihistamine drops
For the eyes
Patanol is the prescription version
DS has used both over the years
Sometimes allergies are so bad they need shots as well
04-21-2015, 12:11 PM   #26
Mehita
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He has a sample of Patanol here. We'll see how he is when he gets home. Maybe give that a go, too. Thanks, MLP.

I suppose it could be grass season, though it's not showing up on any of the allergy sites... AND it's flippin' snowing again.
04-21-2015, 02:04 PM   #27
crohnsinct
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Yeah, the Oil of Wild Oregano I use, I get from Mrs. Green's Market and it is specifically for ingestion so unless you have that one I probably wouldn't try it. I got the OWO from our naturalpath.
04-21-2015, 02:40 PM   #28
CarolinAlaska
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Thanks, everyone. I'm about to head to the pharmacy. I don't think he'd do a Neti pot, but he might do the rinse.

He started Zyrtec for his grass allergy on April 1st. Shouldn't that be helping dry him out a little?

I think the inflammation and drainage from his eyes is what's bothering him the most. I've only ever had one sinus infection. Is eye drainage common?

CIC - I do have oil of oregano, but I'm hesitant about ingestion. All the oil safety sites say to never ingest?
DoTerra Oregano is also safe to ingest, but I can't vouch for other brands. He could also use it topically with a carrier oil - it needs dilution as it is powerful. On the other hand, I've used melaleuca (tea tree) oil with good results topically on my daughter for sinus issues.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-21-2015, 05:19 PM   #29
Farmwife
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Grace's allergies always cause drainage. Drives her nuts. and me.

As far as fatigue we're having the same issue with Grace.
I still worry it will lead to the other shoe dropping.

I hope he's well soon.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-23-2015, 10:46 AM   #30
pdx
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How's your son doing? Hope he's well enough for his infusion tomorrow.
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