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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.
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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.
 
The rheumatologist suggested that the crohn's was probably the cause of the arthritis.
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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.
 
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.
 
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.
 
OMGosh! Thank goodness we are paranoid buttinsky's! So glad you were there to backstop. You make the control freak in me so very proud!
 
Jo-mom, so glad to hear your "man boy" is feeling better ;) and the higher dose seems to be working!!
 

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