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The Worried Mum's/Dad's/Carer's Club!

Maya142

Moderator
Staff member
Yes! We always give the doc a typed short summary of her condition in the last 3 or 6 months - usually just bullet points. And at the end of the summary, M lists questions and concerns, such as "My symptoms return 3.5 weeks after Remicade - the diarrhea comes back, and I'm having 10 BMs per day and I have a lot of abdominal pain, which is making me miserable. What would be the next step?"

That way both you and the doctor have something to look at while M is talking and nothing is missed or overlooked.

She is very organized but this has really helped her take charge of her own medical care -if she is not flustered and worried about forgetting questions, that lets her really talk to the doctor and helps her make informed decisions.
 
Warning long rant.
Okay, L had GI appointment yesterday. Appt was set for 1:30 pm and we saw him at 3:45 PM.
L had Fecal Calprotectin done in Feb, a few days prior to his infusion. He was starting to flare when he had it done. Just found out yesterday that it was 1800. L has never had this test done before so we have no clue where things were at before. Remember that he was mostly crohn's asymptomatic for years and had inflammation in the background.

So we spoke about Remicade levels and how they were below 1 (blood test completed a few weeks ago). L is at 5 mg/kg every 4 weeks at present. When I suggested 10 mg/kg every 4 weeks, he said that this isn't something happens as L is already on double dose. I actually used you guys as reference indicating that many young adults/teens end up getting 10 mg/kg every 4 weeks. The GI was open about this but explained that he doesn't think the drug company will approve it but will put in the paperwork for the 10 mg/kg every 4 weeks.

He did suggest possibly adding MTX or Imuran. L explained that he feels good for close to 3 weeks after the infusion and then it slides down and he gets symptoms (loss of appetite, nausea, blood in stools, whole nine yards).

When I told the GI about your experiences with the increase of dosage, he actually said if I knew the names of the GI, he would be happy to refer L to a new GI who might be more familiar with this regime. Unfortunately, most of your aren't in Canada, specifically general Toronto area. If anyone has any suggestions, please let me know. Now I understand why he ordered another reloading. Now it's wait and see if the drug company will approve. Not sure why they wouldn't?

So I left office with mixed feelings. L will continue with Remicade and hopefully we can get the 10 mg/kg.

GI suggested Stelara if Remicade ends up being off the shelf. I asked if it would also help AS. He said it was approved for rheumatoid arthritis but wasn't sure about AS and would be letting L's rheumatologist know. I did some research and Stelara doesn't seem to be the best choice for AS. I would think Humira would be a better choice. But I don't want to get too ahead of this as right now let's just wait and see if we will get the increase of dosage for Remicade.

I have read different threads re: calprotectin levels. I am surprised that L had such a high reading as 3 out of 4 weeks, he is doing well, but I believe his body never had enough fuel to get rid of the inflammation.

Any input would be very much appreciated. :sign0085:
 
I think that adding methotrexate would be a good thing to try next. It can be an effective Crohn's med on its own, and it also often has the effect of increasing Remicade levels when used in combination with Remicade. Just like with Remicade, it can take a while to work, so your son might not get immediate relief, but I think it might help a lot in the long run.

If he does start taking it, let us know. It can cause nausea in some people, but there are things he can do to minimize it and we can give you suggestions.

As for Remicade, 10 mg/kg every 4 weeks is a very high dose, and perhaps more than what he actually needs. If insurance doesn't approve it, there are in between doses that your doctor could ask for. He could try 7.5 mg/kg every 4 weeks, or 10 mg/kg every 6 weeks.
 
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my little penguin

Moderator
Staff member
20 mg/kg every 4 weeks is high dose on remicade
10 mg/kg every 4 weeks is at the higher end

Stelara failed trials for AS
It is not effective in any arthritis on the spine
Granted that was at the PsA dosing (45 mg every 12 weeks )
And not the crohns dose 90 mg every 4-8 weeks)

Ds has crohns and JSpA however his has not been found in his spine yet
They keep looking
He needed to take high dose Stelara (90 mg every 4 weeks) to even touch his arthritis
He also takes mtx which helps peripheral arthritis and boost the Stelara
Mtx does not help Axial arthritis

Going to tag tesscorm she is in Canada not sure exactly where so she might have ideas on Gi
Her Ds is and adult so she may not get this

In the US it’s tough to get insurance approval for 10 mg/kg
Or any biologic for that matter

Humira might help
Unfortunately the best meds for AS
Cosentrx and Taltz are not good choices for crohns
They can in some cases make crohns worse
And don’t treat crohns
 

Maya142

Moderator
Staff member
Stelara does NOT help axial arthritis in axial SpA or AS.

So if his MRI showed SI joint inflammation, then it's not the best option. Untreated axial inflammation will over time lead to more erosions, more sclerosis and then finally ankylosis (fusion). Both my girls have fusing SI joints and have progressed from axial SpA to a full blown AS diagnosis (an AS diagnosis requires damage to SI joints that shows up on x-ray, not just MRI).

Based on what your profile says, it sounds like he so far has axial SpA (visible inflammation and slight damage on MRI, but none on x-rays). If he is HLA B27+ he has a higher chance of progressing to AS.

Regardless, Stelara does not work for axial SpA OR AS. Any spinal disease (including SI joints) and it failed in axial SpA trials.

And we were told those trials were done with 90 mg every 8 weeks - so not the regular Psoriatic dose (which is 45 mg every 12 weeks). But I'm not 100% sure about that.

Unfortunately, we ran into a similar situation, where my daughter's AS did not respond to anti-TNFs. So eventually we went with Cosentyx, but as MLP explained, it's an IL-17 inhibitor and actually made Crohn's worse in trials.

M has severe AS but mild Crohn's and we felt we had to take the risk of trying Cosentyx because her joints were just getting worse and worse, pain was unbearable, she wasn't able to sit, sleep, walk etc. At the time, her Crohn's was well controlled on Simponi, before she switched to Cosentyx (her Crohn's responds very well to anti-TNFs like Remicade, Humira but her AS most definitely does NOT).

So we tried it, and within 3 months, her Crohn's flared. Added Imuran and played with the dosing for a year, but it caused too many infections. So eventually we got a second biologic approved - Cimzia (which is an anti-TNF). The combination worked for her.

So since your son has moderate Crohn's at the very least, not sure Cosentyx is an option.

But in the US, we were able to 10 mg/kg of Remicade approved - every 4 weeks. I'm shocked your GI says that it's not commonly covered - we had no issue at all. We did 10 mg/kg every 4 weeks for quite a while. And then we did high dose Remicade - it has been studied for juvenile idiopathic arthritis, so we figured it was worth trying for my daughter's AS.

We first did 15 mg/kg every 4 weeks, then upped to 18 mg/kg and then 20 mg/kg. NO issues with insurance approval, but that's probably because M had tried and failed several other drugs (Humira, Enbrel, Remicade at a lower dose etc).

We are in the US, so can't help with names. But I feel like I have seen Canadian patients on this forum (both adult and pediatric) on higher doses of Remicade...Tesscorm's son was on a higher dose of Remicade (I think), so perhaps she can help.

Going to tag Pilgrim - I know Pilgrim's daughter is on a double dose of Humira (weekly vs. biweekly). She is also in Canada.
 
L does not have HLB 27 gene and has mild erosion of Si joint at this time - MRI on rest of his spine was negative. He has mild severity osteoarthritis in both hips. Remicade has helped immensely with his arthritis - although he has also been going to physio 3 x a week for almost a year now, so I'm sure that is helping. He does have moderate to severe crohn's. The GI doc made it seem that the drug company might not approve 10 mg/kg every 4 weeks but he didn't say anything about the insurance company. I am hoping to find out in a few days what happens on that front.



Tesscorm's son is on 5mg/kg every 6 weeks, but I will reach out to her to see if she might have a referral.



Thank you Maya142.
 
Well I wouldn't say that 10 mg/kg every 4 weeks is the usual but it does happen. The fact that this GI is so surprised by that has me concerned. It was Tesscorm's son's GI who said he likes to see he levels over 10 and S may have been on a higher dose at one time.

10mg/kg every 4 weeks is usually used until the kids get into some sort of remission. Then when inflammation is down and is not interfering with drug levels so much you can start moving infusions out and dose down.

I am not familiar with the Canadian medical system but it seems weird to me that he doesn't think the drug company will approve that dose. Does he mean the payor? If so, that makes sense. Here in the US some insurers will require you to try 7.5 mg/kg first before going to 10. Especially since it is really just that last week that is giving him trouble. maybe the 7.5 will work.

Good luck! I really hope they sort this out quickly and you can move forward with a new treatment plan.
 

Tesscorm

Moderator
Staff member
Hi Jo,

Sorry, bit rushed just now... crazy day at work today...

S is at 5mg/kg every 6 weeks (was initially at 8 weeks but has never been higher than 5mg/kg). At his last test, his serum level was at 11 or 12, I asked his GI if we could extend his infusions out to 7 weeks as he was above the 5-8 target level but his GI did not feel 12 was too high. Said the 5-8 is only a rule of thumb and not necessarily a 'solid' target. He also said he had patients as high as 20 and he was comfortable with this as it gave a bit of a cushion should an infusion be delayed.

As far as covering cost... have you spoken with your BioAdvance Coordinator? Ours has been really helpful in assisting/guiding for cost coverage. While S was in school, he was covered under my insurance as a dependent. There was a period when I wasn't working and before S was working full time, he was covered first under Janssen's compassionate care for a little bit and then coverage was transferred to Ontario Health (when they instated free meds for those under 25). Recently, Ontario Health sent us notification saying that they would no longer cover S as those under 25 who have private insurance (ie through work) now need to have their own insurance cover their med costs. So, we just switched over to S's insurance. That was a HUGE battle! Not because they didn't want to cover but because we had very little time between Ontario health's notification and his next infusion, so approval had to be done quickly.

Your BioAdvance coordinator should be able to help you navigate between your insurance, compassionate care and Ontario Health.

I'll send you a private PM a bit later with contact info for S's dr...
 

Maya142

Moderator
Staff member
L does not have HLB 27 gene and has mild erosion of Si joint at this time - MRI on rest of his spine was negative. He has mild severity osteoarthritis in both hips. Remicade has helped immensely with his arthritis - although he has also been going to physio 3 x a week for almost a year now, so I'm sure that is helping. He does have moderate to severe crohn's. The GI doc made it seem that the drug company might not approve 10 mg/kg every 4 weeks but he didn't say anything about the insurance company. I am hoping to find out in a few days what happens on that front.
I'm a bit suspicious of the osteoarthritis in his hips - it sounds like he has mild arthritic damage to his hips. Hip involvement is extremely common in axial SpA, not sure why it wasn't attributed to that. Both my daughters have some hip damage due to their axial SpA. My husband also has AS and developed very severe hip damage by age 30. That is when he had his first hip replacements (he's had 5 replacements).

I only bring this up because hip damage can progress quickly in AS and hip replacements are quite common with AS. So it's something to keep an eye on.

Very glad to hear his spine MRI was clean. Was that hip damage found on an MRI or x-ray?

It sounds like due to the severity of his Crohn's, he definitely needs more than 5 mg/kg every 4 weeks. I think crohnsinct's idea of 7.5 mg/kg is also a good idea - it's very possible that it will work and it's also possible that insurance might cover it more easily.

That said, I'm really not familiar with the healthcare system in Canada.
 
The rheumatologist suggested that the crohn's was probably the cause of the arthritis. Xrays were done on hips. We also did MRI but we never got the results of those - we will find out in July when he has next app't with rheumatologist.
We haven't been given a "no" for the increase of remicade. It was just the GI's comments. I will actually reach out to my BioAdvance coordinator and will find out if coverage is an issue and to see if the GI has sent in the necessary paperwork, etc to get this thing going. GI seems to take awhile to get things rolling. I wonder if I wasn't an advocate for L, just exactly how little would be happening in terms of treatment right now!

Thank you all.
 

Maya142

Moderator
Staff member
The rheumatologist suggested that the crohn's was probably the cause of the arthritis.
Yes - axial SpA is associated with Crohn's. Sometimes it's called IBD related arthritis or enteropathic arthritis - all different names for essentially the same disease. Those results suggest to me that he likely has arthritis in both hips and SI joints - but of course, no one but your rheumatologist can tell you that for sure.
 

my little penguin

Moderator
Staff member
Would like to add DS has juvenile spondyloarthritis associated with IBD as well
But it’s important to note whether the arthritis activity is dependent on Gi flaring
Or indept(flares on its own as well)
For ds his arthritis can flare independent of the Gi tract
So even if his Gi tract is all good his joints may not he
 
L's arthritis seems to be independent of this flaring. When his crohn's is bad, he seems to be doing well with arthritis. Definitely will keep an eye on everything. We see rheumy in July and will find out more about the MRI on his hips. Definitely he has arthritis in his hips as xrays show that but MRI is always a better diagnostic tool. First time I heard doctor refer to his hips as osteoarthritic was at the Emergency when he had groin pull and couldn't walk. I might have just kept that term in my brain. I don't even know if the Rheumatologist referred to them as osteoarthritis. I think a light bulb has just gone on in my brain.

Remicade has really helped - giving him more fluidity to his movements - he can crouch, do stairs, and walk easily now whereas before it was a struggle.

Thank you my little penguin and maya142. It really is terrible to have these kids inflicted with two pretty bad conditions.
 
Hi everyone - thought I would share some good news. L has been approved for the increase of 10mg/kg every 4 weeks. We're lucky to have such a great BioAdvance Coordinator.

Thanks for your input and support. I will let you know how that goes in the future.
:dusty::thumleft:
 
Since you guys have so much experience with all the testing that goes on with crohn's, can you enlighten me why the GI might want to have L's albumin levels tested. Received phone call today by staff to pick up requisition for test. I don't think it has ever been tested. When I checked the website re low or high levels of albumin, he doesn't have symptoms that are obvious. Is this a routine testing if someone has been on Remicade? Is this something that might be done prior to giving methotrexate?



If you guys can share your experiences/knowledge/wisdom, it would be appreciated. It obvious wasn't anything urgent as they (GI office) called on Monday and didn't leave a message and called again today about requisition for blood test.


Still learning here.

:shifty-t:
 
It's a routine test for someone who has IBD. Especially on biologics and immunomodulators.

In addition to flagging some liver issues albumin is watch because when it goes low it could signal IBD inflammation.
 

my little penguin

Moderator
Staff member
Albumin is standard test moot crohns kids
Ds has it checked as part of routine labs at least 1-2 times a year every year
Some years every three months woth std labs
Never had an issue with it
 
Waned to add that it alone doesn't mean damage to liver. There are other tests as well AST and ALT and even then those numbers can be a little off and it is nothing.
 
Hi guys - just wanted to share that I am waiting for L while he is getting his infusion. He made it to 4 weeks for the first time without symptoms. The increase in dosage seems to be helping. Noticed that his appetite remained good throughout and no other obvious crohn's symptoms. Thought I would share some good news. Thanks for your insight. Oh and he has gained about 5 lbs since last weigh-in 4 weeks ago. :)
Do you guys know how long it takes to build up trough levels?
 
Ya he's a boy-man. He says he's an adult when I "nag" him but then he wants his mommy for other things. Boy-man is about right. :) Oh and another thing. I told L to make sure that he was getting the right dose yesterday and sure enough, the nurse was going to administer the 5 mg instead of the 10 mg/kg dosage. He corrected that mistake.. I wonder how often that happens and this is one time where I am glad my mommy intuition worked out favourably.
 
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