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Remicade cycle & fatigue?

Mehita

Mehita

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?
 
FrozenGirl

FrozenGirl

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.
 
Chester31

Chester31

Location
Stockport, UK
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.
 
Maya142

Maya142

Moderator
Staff member
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!
 
Jmrogers4

Jmrogers4

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.
 
Mehita

Mehita

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.
 
Jmrogers4

Jmrogers4

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.....
 
C

crohnsinct

Well-known member
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!
 
Mehita

Mehita

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!
 
Jmrogers4

Jmrogers4

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.
 
Maya142

Maya142

Moderator
Staff member
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.
 
C

crohnsinct

Well-known member
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?
 
my little penguin

my little penguin

Moderator
Staff member
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 ;). )
 
Mehita

Mehita

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.
 
Jmrogers4

Jmrogers4

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.
 
Mehita

Mehita

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?
 
C

crohnsinct

Well-known member
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! :rosette2:
 
Maya142

Maya142

Moderator
Staff member
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.
 
Jmrogers4

Jmrogers4

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... :)
 
pdx

pdx

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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
pdx

pdx

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.
 
D

DanceMom

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!
 
Mehita

Mehita

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?
 
my little penguin

my little penguin

Moderator
Staff member
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 ;)
 
Mehita

Mehita

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. :(
 
C

crohnsinct

Well-known member
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.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Mehita said:
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?
Click to expand...
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.
 
Farmwife

Farmwife

Grace's allergies always cause drainage. Drives her nuts.:yfrown: 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.:rosette2:
 
Mehita

Mehita

Thanks for asking, pdx. He's still pretty wiped out, going to bed early on his own, and being very un-teenagery. Breaks my heart a little to see him pushing through when I know he doesn't feel great. He's still playing tennis 2-3 hours a day, but then comes home and crashes. On a positive note, still no gastro complaints from him so I'm really hoping his Remi levels are okay and maybe he's just anemic. JUST anemic- *LOL*, because we all know there are bigger monsters.

Does anyone know how much the antibodies test costs? And someone said its not covered by insurance?
 
Maya142

Maya142

Moderator
Staff member
Depends on your insurance - our insurance has actually paid for it without even trying to get out of it. I have heard someone on here say $250 though - maybe my little penguin or crohnsinct?

Hope the infusion goes well tomorrow!
 
pdx

pdx

I don't know the cost, but ours was covered by insurance. Good luck today--hope your son's infusion gives him a boost.
 
Mehita

Mehita

Oh, I SO love being trapped in a small infusion room with an angry teenager. I told the nurse he had a head cold earlier this week. He insists it was allergies and now he's mad at me. Whenever nurses ask questions, he always looks to me no matter how much I insist he answer the question. Its going to be one of those days!

Waiting on a call back from the GI to see if we'll bump his dose up today. He weighed 109 and the magical number is 110 pounds. They did run the extra labs - ferritin, b12, and antibodies. Waiting game now.

I think I'm just going to hang out in the Crohn's Forum all afternoon and avoid Mr. Grumpy Pants.
 
my little penguin

my little penguin

Moderator
Staff member
I will trade you grumpy teenager for formula only prednisone kiddo waiting at the clinic full of parents feeding their kids pizza 😜
 
Mehita

Mehita

I'm baffled. Then again we haven't checked his iron since July 2013, before Remicade/remission.

Iron 115 (25-140)
Iron Binding Cap 341 (240-430)
Iron Saturation Index 34 (15-46)

On paper, these look great, but he's never had numbers anywhere this good in the last seven years. The highest his iron has ever been previously is 68. Usually he hovers in the low 30's. His sat index 16 and that's usually more like 7. It's almost so different I'm wondering if there was a lab error? Or maybe this is what remission looks like????

Ferritin isn't back yet.
 
pdx

pdx

Can I join this party? I'm also in a tiny cubicle with an angry (almost) teen--isn't it awesome? Mine woke up too early this morning, so I think it's mostly just from too little sleep. She is also refusing to do anything distracting--she doesn't want the ipad, a movie, a book, or music. Maybe she'll fall asleep...

On the positive side, the NP we saw before the infusion was able to increase her remicade dose to match her weight, and ordered a levels and antibodies test.

MLP--sorry about the food in the waiting room. EEN is hard enough without having kids eating food right in front of you, especially pizza! You're right; I'll take grumpy teen over that.
 
my little penguin

my little penguin

Moderator
Staff member
Still waiting in now tiny room an hour after our appt time
Good thing there is a window
Arthritis kiddo is getting stiff from sitting ....
 
Mehita

Mehita

Of course you can join us, pdx. Is it a full moon too? I've lost track.

Our 12:30pm infusion didn't start until 2:00pm. Hello, rush hour traffic!
 
C

crohnsinct

Well-known member
Hey Mehita,

I hope he has cheered up a bit by now. The antibodies test seems to go hand in hand with the levels test and if done through Prometheus is rather expensive. The levels test is $2,500. They submit and appeal on your behalf. If all appeals have been exhausted and insurance still denies, they will charge you $250 and it will not count towards any out of pocket or out of network charges for your insurance. Prometheus will give you a payment plan. If you need subsequent tests they are billed at $375. I am no sure yet if they write down that cost.

FWIW, we have been in the same place with O this school year. She was dragging, a bit nasty, slow swim and run times, nose bleeds, fainting, finger prick at ped even came up low HGB 10.2. I emailed and warned the GI's office. We didn't adjust infusion but they ran a full iron panel and they told us it as the best she had ever been. Levels were spot on. No antibodies. All other tests totally normal...must be normal teen stuff and not Crohns. I can't explain it...maybe placebo affect...but after infusion she bounced right back.

I hope you find the same!
 
Mehita

Mehita

Interesting, CIC. I think maybe that's the same thing happening to DS.

Ferritin came back at 58, which is really good for him, and B12 was 1013. I don't have a range for B12, but it was flagged as high. Weird.

All othe labs were normal. I'm guessing a week wait on the levels check.
 
Mehita

Mehita

Catherine said:
Is he taking vitamin b12? Do you have folate?
Click to expand...
The only B12 is in his multivitamin at 18mcg. The folic acid in his multi is 400mcg. Those quantities are for three pills a day and he only takes two. Maybe he should drop to one?

I already read all the scary stuff about high B12.
 
C

crohnsinct

Well-known member
O was ridiculously high for b12 when they tested her also and she is a vegetarian! It isn't really b12 they look at anyway it is MMA (I will have to look up the actual name). Either way, no one was concerned and we never tested again.
 
Maya142

Maya142

Moderator
Staff member
M has had high B12 too - I read all the scary stuff online, and promptly freaked out and called her GI. Her GI was not at all concerned and said we could recheck it in a couple months, but it wasn't very high and it wasn't a big deal at all. The next time we checked it, it was completely normal.
 
Mehita

Mehita

DS has perked up considerably since his infusion. Okay, that's an understatement. It's been a world of difference. He had a tournament the next day and was literally running around for six hours - and was just fine. I'm very intrigued to see what his Remi levels come back at.

I got the official results with ranges for the other tests.

B12 was 1013, normal is 247-911
Ferritin was 58, normal is 26-388, not spectacular, but not horrible.
Iron was 115, normal is 35-180
ESR was a little higher than usual at 13, normal is 0-15, but CRP is usually the better indicator for him and that was <2.9, normal 0-8.

From the discussion on another thread about him possibly being underdosed, his GI nurse said that they decided they didn't want to change his dose yet because they wanted the levels back first to avoid insurance issues and because he was on the bubble in terms of weight. Generally, they round down and since he wasn't having issues beyond fatigue and even that couldn't be directly attributed to Crohn's, they felt they didn't have enough justification to up his dose. By his next infusion he will be over 50kg, so then he will go up due to weight.

Ultimately, I do think his Remi dosing is the problem. It's been the same dose for 18 months, yet he's gained 10kg in that time. He's now 49.4kg and at 5mg/kg. He got 200mg of Remi in a 295mL bag. The math just doesn't work in his favor - for now. At his next GI appt, I'm not leaving until I get an explanation how dosing works.

So glad the fatigue is gone though. He's a much nicer person when not tired!
 
Mehita

Mehita

The Remicade levels came back. Big fat ZERO! And he's developing antibodies. The antibody value was 24.4, but the nurse didn't know the range off the top of her head. Anyone?

Taking input on our options:
1) Go to 10mg/kg every 8 weeks.
2) Go to 10m/kg every 6 or 7 weeks.
3) Or my suggestion, which they are considering, go to 7.5mg/kg every 8 weeks.

Keep in mind, due to rounding, he's only been getting 200mg. If we go to 7.5mg it will double to 400mg. If we go to 10mg it will go to 500mg. I know the math seems funny, but that's how it works out.

I don't know what to do about the frequency. Should we try a different dose then a different cycle? Should we do six weeks this next round since we know he's at zero by eight? His only clinical symptoms are a slight decrease in appetite and fatigue around 6 1/2 weeks.

What is the recommendation for building antibodies? Aza/Imuran/6MP had no effect on him. Is this where MTX gets added?

I'm not panicking yet, but definitely bummed. There is no way he'll tolerate Humira so we need Remi to work forever.
 
Last edited:
pdx

pdx

I don't have any advice--we're too new to this. But I'm interested in hearing the responses from others with more experience. It's good that you asked to have the levels test done.
 
my little penguin

my little penguin

Moderator
Staff member
So I know you don't want to hear this right now
But once the immune system has identified remicade molecules as foreign ( hence the antibodies ) there is no way to trick it into not fighting against the remicade.
The more often he gets it the body will continue to fight it.
So either he wil burn through the meds faster thus making it work less or be at higher risk for anaphalaxis during an infusion.

Mtx/6-mp has only been shown to reduce the likelyhood of forming antibodies to remicade or humira when used during the first 6 months of the drug ( other studies say it doesn't help ) but once you have antibodies Mtx/6-mp can't turn back the clock so to speak .

As far as timing dosing
7.5mg/kg every 6 weeks is the next standard bump up from 5mg/kh every 8 weeks.

Another mom had the antibody thing happen on here a while ago
I think her kiddo ended up with a reaction later .

DS had two reactions to remicade with no antibodies and high serum levels so ...
It's always a guessing game

Hugs!
 
Pilgrim

Pilgrim

I'd do #3 (your suggestion, good thinking mom) but I would consider adding MTX to keep antibodies at bay.

If they do that and there's still room for improvement, then you could still decrease time/add more remi.
 
Pilgrim

Pilgrim

Oops! Didn't know about the 6 month antibody thing. Never mind. What MLP said :)

What about a med switch altogether?
 
my little penguin

my little penguin

Moderator
Staff member
Results: One hundred fifty-five patients had HACA and infliximab concentrations measured. The main indications for testing were loss of response to infliximab (49%), partial response after initiation of infliximab (22%), and possible autoimmune/delayed hypersensitivity reaction (10%). HACAs were identified in 35 patients (23%) and therapeutic infliximab concentrations in 51 patients (33%). Of 177 tests assessed, the results impacted treatment decisions in 73%. In HACA-positive patients, change to another anti-tumor necrosis factor (TNF) agent was associated with a complete or partial response in 92% of patients, whereas dose escalation had a response of 17%. In patients with subtherapeutic infliximab concentrations, dose escalation was associated with complete or partial clinical response in 86% of patients whereas changing to another anti-TNF agent had a response of 33%. Patients with clinical symptoms and therapeutic infliximab concentrations were continued at the same dose 76% of the time and had no evidence of active inflammation by endoscopic/radiographic assessment 62% of the time
Click to expand...
http://www.medscape.com/viewarticle/734584_1
 
Maya142

Maya142

Moderator
Staff member
I would at least increase the dose and see what happens. I know one kiddo who had a slight allergic reaction and was positive for antibodies. She is premedicated with steroids and Benadryl and a year later, she is still on Remicade and doing well. It's possible she will have a worse reaction at some point and have to discontinue Remicade, but so far so good.

My older daughter had a (low) positive antibodies tests when on Remicade. Remicade continued to work for her for about a year and she never had an allergic reaction. She had started Remicade and MTX together though. When Remicade stopped working, we tested levels again - trough levels were fine and antibodies hadn't increased, it just sort of stopped being effective.

My younger daughter has been on Remicade 3 separate times and each time her trough levels were good and she had no antibodies but it stopped working.

What I'm trying to say is that it's really very individual and I wouldn't completely panic just yet. You may get a year or more out of Remicade. And even if you have to move to Humira, your kiddo might surprise you and handle it well. My daughters hated it but understood why they needed it and dealt with it surprisingly well. You could add lidocaine, like my little penguin does.

Hang in there :ghug:
 
Jmrogers4

Jmrogers4

We went the 7.5ml every 6 weeks before bumping to 10ml every 8 weeks.
Hope what Maya says is the same in your case and you can continue on for some time. That just sucks, hate that you have to think about the next step again..
 
Maya142

Maya142

Moderator
Staff member
Wanted to add that when my older daughter had the positive antibodies test we went from 7.5mg/kg to 10mg/kg. She was on 6 weekly infusions because that is standard for AS.
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm fairly sure I've read here that increasing frequency is more successful than simply increase dosage. (Not sure if I read it on the parents' research section or the main forum's research section.)

But, I agree with all the above, on all counts... it's likely remicade will eventually stop working for him (but, doesn't it eventually stop working for most anyway, at some point?? :() BUT that doesn't mean it won't still work for a while! Everyone responds so differently, you can't give up on remi until you know it's not working any more.

And, if/when you do have to switch to humira... I would definitely try adding lidocaine and there's definitely the advantage of doing it at home, on your schedule. May not be much of an issue now, and not saying it's a huge issue for S, but have found schedules are even more demanding as they get older... an issue if they are away at school and need to come home for infusion, or when they need to miss uni/college classes, or if it falls during exam schedules, or when trying to fit in holidays in between already tight school/job commitments. Like I said, not a huge problem and I'm not sure why but I've found it's become more of an issue as time goes on and has taken more forethought and planning. So, not all bad if humira must be considered. :ghug:
 
Maya142

Maya142

Moderator
Staff member
I think (not sure though) antibody levels can be MUCH higher, in the 100s or even more. Can anyone confirm that?

S's was 48, just looked it up. Her doctors weren't hugely worried because they said some patients can have antibodies and the drug continues to work for a long time while others don't have antibodies and the drug just stops working.

Humira is definitely more convenient. My kids loved Remicade but my older daughter especially is very glad to be on shots in college - like Tess said, it becomes more inconvenient as they grow up.
 
Mehita

Mehita

I'm putting my rose colored glasses back on.

DS took the news surprisingly well. He wants to keep riding the Remicade train as long as he can, of course. I asked if he can tell the difference between tennis tired, teenager tired and Crohn's tired and, to my surprise, he said yes. He's says he had been Crohn's tired until he got his last infusion two weeks ago and he then felt better right away. Tennis tired is short term and more physical, teenager tired usually includes major moodiness and emotions, and Crohn's tired is flat out fatigue and exhaustion - no energy to even be grumpy. Glad we got that squared away! Now we watch and wait, I guess?

He's being bumped to 6 weeks, dosage at either 7.5 or 10, they haven't decided yet. I'm going to request that his levels be run again at 6 weeks. That's reasonable, right? Bummer is that it's going to coincide with finals week. Hello, 504.

He's going to LOVE me staring at him; watching for reactions. I can hear it already, "Mom. Mooooom. MOM!"
 
my little penguin

my little penguin

Moderator
Staff member
Good to hear they are bumping up dose and interval.
It really might be a long while
DS started reacting by the third infusion ( blisters and skin rashes and never made it to 8 weeks -6 weeks was the longest )
He last another another 7 months before we had to stop and even then we tried steriods with remicade infusions after his first reaction

As far as humira
It's not about the pain but being in control of the pain
Picking where
How
What to watch
Adding lidocaine
Controling the speed of the syringe either himself or placing his thumb over yours

Etc....

Good luck with the higher dose
 
C

crohnsinct

Well-known member
Oh man Mehita! That sucks!

I lso would be inclined to throw a Hail Mary pass at this one and hang on as long as I could. Hopefully the antibodies will stay put!

I give you props for not being angry (at least visably) about the under dosing. You are a better Crohn's mom than I:worthy:
 
Mehita

Mehita

crohnsinct said:
I give you props for not being angry (at least visably) about the under dosing. You are a better Crohn's mom than I:worthy:
Click to expand...
I've been Googling how to swear in Russian (Drs native language) and DS has been given full permission to not be polite at his next visit.
 
Mehita

Mehita

Just got an email from the GI nurse with some changes.

DS is going to 7 weeks (not 6) and 400mL, which I believe is 7.5mg/kg. They don't want to test levels this time, but will the next time after this dosage increase. This dose will be double what he's been getting.

They're also going to start pre-medicating with Solumedrol. How should I feel about this?

Interestingly, the GI said there are antibodies related to anaphylaxis and antibodies that eat up the medication and that the Remi test cannot differentiate between the two. Has anyone else been told this?

The GI also said that we can add 6MP or methotrexate to decrease antibody formation/response, if needed, which is not what I've been reading.

What say the committee? Think this is a good plan?
 
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my little penguin

my little penguin

Moderator
Staff member
Good plan

Solumedrol is pretty standard - it will calm the immune system down so a reaction is less likely to happen and if it does happen standard meds are solumedrol /benadryl( h1 blocker -histamine ) and Tagamet ( h2 blocker histamine ) or epipen.
If you are allergic to say contrast dye ( aka DS) then the protocol to reduce allergic reaction cam be steriods 24 hours before then given the morning of and then just prior to contrast
- others can get away with steriods just prior to iv

So that would be what they're probably basing it on,
That said DS reacted to remicade so next infusion he got benadryl /Zyrtec /zantac and solumedrol. DS still had a prolonged reaction ( tongue tingling for days plus itchy etc)
Dermotologist verified his tongue had tiny blisters all over it that we couldn't see but she could ( magnifying glass ) .

Antibody tests for remicade are relatively new so as your gi said they can't really tell igE ( anaphalaxis antibodies from the other kind yet ) they could do a skin prick test but that would cost you up to $1000 or more since you would need the remicade meds to scrape the forearm with -we did this at the allergist with DS after he had an injection site reaction and was upping his dose from 20 mg to 40 mg.

As far as 6-mp or Mtx adding
They will increase the efficacy of the drug keeping the remicade levels higher in his system which I its self can reduce the likelihood of reaction

I don't think the antibody thing has been perfected yet personally and DS's dermotologist agreed - they just don't know enough yet to accurately predict who will and will not react


Not sure on why the switch to only 7 weeks
That's weird
Most switch from 8 then back to 6
Then only bump back to 7 after 6 works really well for a while .

Might be an insurance issue that's driving it
 
Maya142

Maya142

Moderator
Staff member
We added Solumedrol the third time M was on Remicade. Her rheumatologist was just being cautious and I don't know if it ever helped but she never had a reaction so I'll assume it did (though she didn't have antibodies either so who knows if she'd have had a reaction without it).

We found that M was either bouncing off the walls and felt great the day after Solumedrol or in tears and cranky, kind of like the Pred mood swings. It just lasted a day - I don't know if this is a common reaction though.

Immunomodulators seem to be a good idea. The jury's still out about what exactly they do and how they work in conjunction with a biologic, but if it can Remicade last longer for him then it's worth a try. Some studies do say that they increase trough levels.

We have heard the same thing about antibodies (about different kinds of antibodies) - and also from one GI that the test isn't accurate because it does not differentiate well between the drug itself and and the anti-drug antibodies (though if your trough level of Remicade is 0, then I suppose that doesn't apply). The fact is that no one knows enough just yet.

Not sure about the 7 weeks because my girls never reached there.
 
M

momoftwinboys

Mehita, sorry to hear he may be starting to build antibodies. H had to switch to humira this fall. He had back pain during the infusion. They ran the Prometheus test. His antibodies were 97 and zero remicade left. They said if number was lower they had options but since the antibodies were so high and no remicade left a new med was needed. So since number is low, sounds like ride the remicade train as far as it will take you. I will say in hind site I think they let H get too low on dose as his weight went up. He was at 4.3 rather than 5 for a while
Humira is not horrible but we all liked remicade better. H does the pen. He would rather just get it over with and move on.
Good luck. Glad to hear he is feeling better after the infusion.
 
Maya142

Maya142

Moderator
Staff member
Came across this article, has some great info! ATI = antibodies to Infliximab

Although the presence of ATI can lead to a permanent loss of response, some patients experience a transient antibody response. A retrospective study examined 1232 serum samples from 64 CD patients and 26 UC patients. Testing the serum samples with the homogenous mobility shift assay (HMSA) revealed ATI in 53 of 90 patients (59%). In 15 of the 53 patients (28%), ATI disappeared over time, and only 2 (13%) of these patients discontinued infliximab therapy. In contrast, 26 of 38 patients (68%) with sustained ATI discontinued treatment.14 Although many patients with sustained ATI experience a complete loss of response, treatment with an immunosuppressant may overcome ATI. In a retrospective analysis of 5 patients who had developed ATI, 3 patients received azathioprine or 6-mercaptopurine and 2 patients received methotrexate. All patients showed decreasing levels of ATI and increasing trough levels of infliximab. Competition assays demonstrated increased drug activity in serum in parallel with the reduction of ATI.15
Click to expand...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219491/

Also includes info about trough levels.
 
Mehita

Mehita

I'm really, really trying to stay positive, but he's been in the bathroom the last hour with diarrhea. No fever, no mouth sores, no blood or mucus, no nausea, slight stomach ache. Hope he gets through the night.
 
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Mehita

Mehita

He slept through the night. He went to school this morning, but I think only because he has a big English project due this morning. As expected, he's tired since he was up so late in the bathroom. I told him to call me anytime today and usually he follows this up with a "you're being paranoid" eye roll, but today he didn't. He didn't eat breakfast either.

He's a 1-2 poop a day kid and said it had been about 30+ hours since his last BM. The urge hit in the middle of his band concert, so he held it in for a good 30 minutes before having an opportunity to use the bathroom. Initially, he had big logs, which is unusual for him, and then it turned into diarrhea. I felt kind of bad because we were at the high school when this all happened and his band director had to wait it out with us last night. Awkward.

And we're pretty sure it wasn't gluten. He usually vomits when he's been glutened.

I wish he had a "check engine" light!
 
Mehita

Mehita

Feeling a bit discouraged. Though I know it's coming and we have a plan in place, the appetite is dropping and bathroom issues are starting at week four. He was in the bathroom for an hour this morning and was late for school. He said he was pooping the entire time. Really? For an hour?

If our nurse was still here I would email her and just say, "FYI, what do you think?", but now that she's gone and I'm supposed to email the GI directly, it seems like it's not big enough of a deal yet.

I feel like we have a history of waiting too long before taking action and DS pays the price. Waited too long to start meds, waited too long on Aza, waited to long to test Remi. We're always waiting for clinical symptoms, but when those clinical symptoms come around, they're doozies! Frustrating.
 
C

crohnsinct

Well-known member
Email the GI. Your son shouldn't have to suffer a minute longer than he needs to. Worse case the doc had to take two minutes out of his time to read your email but at least you dumped the worry off from you. No matter how small something seems, if it is niggling at me, I dump it on the GI office and then I can get on with my day. Usually it is a wait and see but t least then when things get worse it isn't, "why didn't you tell us sooner".
 
Maya142

Maya142

Moderator
Staff member
Definitely call or email. They might want to move his infusion up.
Hang in there :ghug:
 
Mehita

Mehita

Excellent point, Pilgrim. Ok, I'll send an email.

I think someone should do a study on the frequency of emails and phone calls sent to GI's before holidays and weekends. I feel like a high proportion of my emails and calls are on Friday afternoons. I might have to wait until tomorrow so as not to break tradition. (Kidding!)
 
pdx

pdx

We've also got increasing diarrhea this week, 4 weeks from the last Remicade infusion. I guess I'll e-mail our GI too.

How is your son doing?
 
Mehita

Mehita

His GI said to monitor through the weekend and touch base after the holiday.

It's 2:00am and he just threw up. We did eat at a restaurant tonight, which we rarely do because of his Celiac, and he ordered GF spaghetti. He picked at it and didn't eat much. Eight hours later, like clockwork, he was throwing up. Glutened? Quite possibly. He took a Zofran and is finally sleeping again.

The part that troubles me is that when he had his stricture and the vomiting started, we always chalked it up to gluten when in reality it was the stricture.

And, coincidence or not, this is the second cycle in a row that he's vomited at week four. Celiac? Crohn's? Your guess is as good as mine. I don't know what in the world we did to deserve this double diagnosis. I never know what we're dealing with and it totally sucks. Mini pity party here.
 
D

DanceMom

I can't remember, but has he had a full immune workup? I recently read about a case of immune deficiency that presented like Crohn's and Celiac combined. Some sort of false positive in regards to the celiac testing due to the immunodeficiency. These diseases have so much overlap.
 
pdx

pdx

So sorry to hear this. Hope the rest of the weekend goes better for your son, and that your GI will be ready to make some decisions with you on Tuesday so that you can move forward. I'm sorry that your son has to deal with both Crohn's and Celiac--either one is hard enough on its own...
 
Mehita

Mehita

DanceMom - No full immunology work up, though IgA is part of the Celiac panel and that's done once a year. I have vague memories of seeing IgG as well. I don't recall any red flags. The Crohn's dx was from biopsy and the Celiac was biopsy, visual, and blood (plus he vomits every time he's had an exposure). I'll put it on the list for the GI though, see what he says.

pdx - DS likes to think since he's in the 10% that has the double dx, he's saving 90% of the population from this life. His way of trying to stay positive. How's your kiddo? Has the diarrhea eased up?

I feel kind of bad that the last time he threw up and again last night, he had a friend - the same friend - sleeping over. Nothing like having to whisper yell up the stairs to your friends parents at 2am while standing around in your boxers! Poor kid.
 
Maya142

Maya142

Moderator
Staff member
Poor kid, I hope he starts feeling better soon. Not a fun way to spend a holiday weekend :(
I hope the GI has a plan and that the increased dose of Remicade will work like a miracle!
 
pdx

pdx

Your son's way of looking at his double diagnosis is admirable, Mehita, especially for a teenager!

E is still having diarrhea a few times a day. She's also got a mild cold, which has left her congested enough that she hasn't been able to do the nighttime tube feeding for a couple of days. Between that and the diarrhea, she's losing weight. At least her weight is up enough in general that losing a few pounds isn't a crisis any more, but it's still frustrating.
 
Mehita

Mehita

Diarrhea woke him up last night. Thankfully, he made it to the bathroom. He insisted on going to school today so I let him, but I just sit here and shake my head. He's gotten so used to pushing through symptoms over the years, I don't think he realizes he's even having them sometimes. Any other kids like that?

Then again, he only wears his Medic Alert bracelet when he's not feeling good (I know, I know). If he needs to leave class for the bathroom, his signal to his teachers is to catch their eye and tap his bracelet as he leaves. He wore his bracelet today. On his own. No nagging from me. It was 5:30am and I was instantly awake!

I talked to his GI this morning and he's going to join the six week club after all (June 5th). Since next week is final exams, DS is insisting on no appointments or a sooner infusion. He might change his tune if the diarrhea persists! His GI said if it does, he can either start Pred to bridge him to the infusion or do the infusion earlier. He's getting Solumedrol at the next infusion due to antibodies, so either way he's getting steroids next week. Hopefully, it will be just enough to calm down whatever is brewing and we can move on.
 
D

DanceMom

A is the same. I think having a chronic illness tends to make you tougher than your peers. I watched one of A's peers have a complete meltdown at gym last night because she had a stuffy nose. A just shook her head, very annoyed. As much as it breaks my heart that our kids have to go through this, I know that they'll be very strong and determined adults with a powerful story to tell.
 
Mehita

Mehita

Infusion is underway at 6 1/2 weeks (the only time they could get him in). They did 400mg (doubled his dose from last time) and added Solumedrol. Minus the D from my previous post, he's been well, so I was surprised to see he's lost 2 kilos. His appetite has dropped a bit, but I didn't think it had dropped THAT much. Not sure what to think of that. He has a follow up appt with his GI on June 22nd.

Hoping to get his labs back soon, preferably with no surprises.
 
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