Labs while on Remicade

[PatriotMom]

Just wondering how often your kids get basic labs (cbc, liver panel, inflammatory markers) done while on Remicade. My son (just turned 17) was diagnosed w/ Crohn's 3 years ago,due to growth failure (pretty much the only symptom).



Initially started on Remicade with office visits w/ the doctor and labs at every infusion (every 8 weeks). After about a year and a half we had a doctor visit & labs at every other infusion (so labs every 16 weeks). This past summer, insurance was no longer going to cover infusions in a hospital setting, so we switched to home infusions, and were on a 4 month call back w/ the doctor. He's had 2 home infusions so far, and today was his dr. appt (last appt & labs were end of May 2018). I was surprised when the dr said we didn't need to do labs today since he's responded well to treatment and all his labs have been fine (initially labs were off, but came back to normal once on Remicade). So since our next appt will be in 4 more months, that will make 8 months between labs (assuming we do them then), which seems like a long time to me!


I did question the dr, especially since he never really presented w/ any of the typical crohn's symptoms...but the dr thought that since he is feeling well, and at a normal bmi (body mass index) & consistently has had normal labs that it was unnecessary. I've also heard about some people having liver issues due to medicines so I brought that up, but basically the answer was that his labs have been fine.


I have to admit that I liked when he got labs, just to give me the piece of mind that everything was ok....but I know that's not a reason to continue them if not medically necessary. But just wondering if 8 months seems like a reasonable amount of time in between having them done. Thanks in advance for your opinions

 

[my little penguin]

Ds always has labs every 3-4 months maximum
Regardless of the med
3-4 months in humira and Stelara forvthe oast 7 years
Ever infusion for remicade but he was only on that 8 months

No labs is weird
They monitor liver kidneys and wbc etc...
To make sure a Crohns is behaving and
Med is not causing organ issues

Yikes
Can you get pcp to order labs ?

 

[pdx]

My daughter gets basic labs done with every Remicade infusion, so every 6 weeks. She gets extra nutrition labs every 6 months, and then Remicade levels a few times a year.

I would also be uncomfortable going 8 months between labs, and agree with MLP's suggestion to check with his pcp.

 

[Lisa]

I get labs done every other infusion - so every 16 weeks.....been getting it done this way for probably 10 years or so....some of my labs can be a bit wonky, never have everything within 'normal' limits so that may be why.....I do have an office visit once/year and of course my annual scope.....

 

[crohnsinct]

My daughters have had labs every infusion (one every 7 weeks and the other every 4). Recently our GI said blood labs aren't the greatest indicator of inflammation and he prefers to use fecal calprotectin so we are going to FCP every infusion and blood labs every 3-4 months. Clinical follow up appointments every 6 months.

 

[Maya142]

Our GI does labs every 3-4 months unless something comes up, and then they are more frequent.

We used to do them at every infusion, then every other infusion. Every 8 months seems like too long an interval. Labs aren't just used to monitor inflammation, they're also used to make sure your kiddo's white count isn't too low and his liver and kidneys are behaving. So it's really important to have them regularly.

Inflammation can be measured other ways - usually by Fecal Calprotectin. But you have to monitor the liver and kidneys somehow, so labs have to be done every so often.

 

[PatriotMom]

Thanks for all the responses. It's nice to know what is typical with others...doesn't make me feels so unreasonable to call back! As MLP & Maya mentioned, it does also concern me how his body (liver, kidney's, etc) is handling the remicade. I'm going to try following up w/ the GI office first, but will keep the suggestion of getting his pcp to run labs in the back of my mind!

 

[Maya142]

I'm sure you would be able to find info on how often GIs run labs on specific meds. So for example, if he were on MTX, what the ordered labs would be (probably just a CBC and CMP) and how often they should be done might be found online - so you can take info to back up what you're saying!

I know for Azathioprine, there is a particular schedule for labs that many GIs follow - every
week for 4 weeks, every other week for 4 weeks, every month for 3 months and then every 3 months indefinitely and so on.

Just make sure the info is from a reliable source - like Medscape for example. ImproveCare now might have guidelines too.

 

[crohnsinct]

If you read those long mouse type prescribing information brochures that come with meds, some will reference lab monitoring.