Labs w Remicade

[Mehita]

I know this was recently discussed, but I can't find the thread. We saw DS's GI today and I asked about coordinating lab work to happen on infusion days. He said we'd run the typical labs at the next infusion on Feb 7th (4th infusion), but after that it would only be as needed if DS isn't feeling well. He thinks labs every two months is too often. I see his point, but I'm not sure how comfortable I am with that? Once bitten, twice shy I think.

Outside of infusions, we are now on a 6 month schedule for follow up visits in the office. We could do labs then, but that's another poke and one nurse has already mentioned scar tissue on his veins.

Thoughts?

 

[Jmrogers4]

We will be doing CBC at each infusion according to Jack's GI and I would imagine and FC in a few months as blood has not correlated to disease activity. Jack was told to expect blood draw before each infusion.
We have a previously scheduled follow up appt on Feb. 9th but I'm not sure we need it as we pretty much had a regular appt. with him before first infusion started (one of the perks of getting infusion in GI's office).
I'm with you though. After everything he has been through. Would he do every 2-3 months for first year and then if every thing still looks good every 4-6 months.

 

[Sudsy]

My dd has full labs run at every remicade infusion. Our friend (at another major children's hospital) has the same.

I would always vote for knowing more and knowing earlier....

 

[my little penguin]

DS had a full set of labs run prior to every infusion reason being the were poking for the iv anyways so they just did the blood draw when the iv was placed.
We have never gone more than three months between appts in almost two years.
Three months is the longest for blood draws as well typically 6weeks to 2 months out.

 

[Maya142]

We also did labs at every infusion when M was on Remicade. It was very convenient not to have to do labs separately! Her GI didn't check her CRP every time but she did at least do a CBC.

 

[Tesscorm]

I understand your concerns... I'm sort of in the same boat. When Stephen first started remicade (Feb. 13), labs were every infusion but, at some point in the summer/fall, they moved to every other infusion. I don't know exactly when because I don't go with Stephen and then there was some confusion that the GI's standing orders were not renewed by the infusion centre! Anyway, as of now, they are every other infusion.

I agree that there isn't any harm in doing them at every infusion - other than the fact that I'm sure there are regular fluctuations in levels and seeing them too often might only cause anxiety unnecessarily. But, if not at every infusion, then why not every other infusion???

I thought I was in the exact situation you're in now and I wasn't comfortable with it either.. The reason I found out that Stephen's 'testing schedule' renewal hadn't been made was because I happened to go to one infusion and they didn't run bloodwork (when I'd thought it was being done each time). I questioned what was the 'normal' testing schedule for other patients and the nurse said some GIs do it every infusion, some every other, some once a year. I asked about Stephen's, she checked and said 'oh he doesn't have a set schedule, it's whenever the GI asks.' I was really uncomfortable with this, thinking why would the GI sporadically be thinking 'oh let's test Stephen' when he has so many other patients with much more serious issues. So, I called the remicade nurse and asked her about it and that's when we realized that the standing orders are only good for six months and should've been sent for renewal by the centre, which they didn't do! Sorry, I do ramble... my point of this is that I was not comfortable with an ad hoc schedule... in Stephen's case, at least, after his first flare, he's barely shown outward signs of inflammation, if they is the case with your son, I would not be comfortable with random checking (or if they're are signs). :ymad:

I can understand it's hard to go back to the GI after he's already said 'no' but can you explain the situation and your concerns and ask your ped to run tests every other infusion (even if it is an extra poke)?

 

[kimmidwife]

We also did labs at every infusion. When my daughter had remicade. Ask him tell him all your friends kids have labs done every time why does he think that is not necessary? You can also call remicade and ask them what they advise as the normal procedure. They are really great about answering questions. I spoke with the several times.

 

[Mehita]

I have no problem asking for labs. While our GI tends to be conservative, he's never said no to anything I've requested.

And I misspoke about office visits every six months. We're on a four month schedule. I scribble so fast during appts, I can't read my own handwriting. :ybatty:

Hmmm...

While I do think DS's CRP does reflect inflammation, the problem is that (until Remicade) it's always hovered at or just above normal. Top end is 8 and he'll be in the 10-12 range and no one bats an eye. It's just not exciting enough. Since starting Remi, his CRP isn't even measurable (<5). Maybe I'm just borrowing trouble and need to chill out. :cool2:

Sounds to me like there's no harm in doing labs at every infusion, aside from cost, but there could be harm in not doing them. The committee has decided. :ghug:

 

[araceli]

We do cbc, automated Diff, routine chemistry and sed rate before infusion. My daughter is feeling great, no symptoms at all, but we found out at last infusion her sed rate is at 28, which is high for her. higher she has been at her worst is 40. She went from 11 to 28 in 8 weeks. I don't know yet what's going on with my daughter, we will do more test to find out. :confused2::confused2::confused2:

 

[Lisa]

I have labs drawn every other infusion - I think at first it was every one (every 2 months), but as time went by with good results and no symptoms, it was spaced out to the every 4 month schedule. It sure is nice not to have to get them done separetely!!!

 

[SupportiveMom]

When my daughter was on remicade she had her blood drawn at every infusion. That was the standard request our doc did, Remicade & blood tests go together. She wanted it done every time. At the end of her using Remicade we were getting infusions every 4-5 weeks and blood was drawn every time. Some kids & adults had it like her, but the infusion nurse said not all are done that way. Now we were having problems in the end so it was good we had the blood work to compare it to, so that might have been more of a reason to order it in the end, but I think that was just our doctor's standard operating procedure.

 

[Jmrogers4]

Guess I better correct what I said earlier, Jack's GI does have labs done at every infusion except for Jack since they have always been normal regardless of disease activity. So we will be doing them every other infusion and doing FC as our go to lab as that is the only one that shows inflammation for him.

 

[crohnsinct]

Just throwing my two cents in...O and every other kid at infusion gets tested every infusion. Even on a 5 week schedule and suspected total remission O had blood drawn every time. Always, CRP, ESR, CBC, Liver panel (Remi can affect liver) and then he alternates between vit D and some others with every other.

Glad you agree with the committee.