UPDATE GI/Rheumo appt

[my little penguin]

Update :
DS saw GI and Rheumo today.
I believe every child with IBD should have a Rheumo:soledance:

GI is going to push for the slides to be stained for MAST cells:rosette1:
He switched Ds over to zantac (H2 blocker) twice a day instead of prevacid.
He agreed to try a mast cell stabilizer even if :
a.) there are not excessive mast cells on the slides.
b.) Allergy decides he does not have MAST cell activation syndrome.

He said in his case there is alot of "other" stuff going on so it would make sense to see if we could calm stuff down and possibly eliminate his stomach pain without pain meds.:medal1:
WE agreed to watch for a while and give remicade 3 months for growth issues.

DS just started loading dose of Remicade. He has had two infusions so far.
He has a Rheumo and a GI following his Crohn's.
Our next loading dose is 4 weeks out.
Rheumo then wants him on every 4 weeks infusions until he is at baseline for a while then slowly move out as needed.:eek2:
His theory is you want to get things under control quickly then let the body heal and keep it under control before you try to "see" if you can stretch the time limit.
He said the 8 weeks is just the maximum time you can go between doses that this is not really a one size fits all disease and neither should be the dosing of Remicade.
He is going to "Talk" things over with the GI.:yfaint:

Thing is I really trust both docs. So far the Rheumo has been "spot on" with what DS needs. Just don't like when there is "in fighting" amongst the specialists.:shifty-t:

So has anyone else ever started at 4 week intervals after the loading dose???

 

[crohnsinct]

Hmmm I have never heard of starting with a 4 week schedule BUT I have never met anyone at the infusion center (rheumy or GI patient) on the 8 week schedule. I asked the nurses if anyone ever does 8 weeks and they told me they have a few but 6 seems to be the going schedule so maybe your rheumy just knows that and figures why let things go while screwing around with schedule. In addition to playing with schedule then you also have the playing with dosage. It takes awhile to hit on what works and rheumy sounds ultra conservative but that is probably warranted in your sons case.

 

[Sascot]

That sounded like really good appointments. It's great when they seem to be listening and trying things to help. No idea about the Remicade - never used it - good luck with it all. If it gets things under control quickly then it will be worth it!

 

[Tesscorm]

They do sound like productive apptmts!! All of these meds are so scary, especially when it seems they are tightening schedules, upping doses - hate it! But, it really does sound like you have both the GI and Rheumi closely watching him and I'm sure they will be watching every test result (as you will be ). Actually, I think the fact that they are not in 100% agreement on the dosing may make them even more likely to look for any small concern. Trust your instincts here... you trust them and they seem to be looking at the whole picture, not just one aspect of his illness.

:hug:... it's never easy but will be so nice to hear, and so worth it, when he's feeling well and not struggling with ANY symptoms!!

 

[jmckinley]

I've never heard of going to 4 weeks after loading. But from experience I can say don't waste your time on 8 week intervals. Ryan saw no improvement with that. He didn't show any until we went to 6 weeks and added methotrexate.

I'd agree with Tess and use the 2 Dr's differing opinions to your advantage. They sound like they are looking hard at the case, which is always a good thing!

 

[DustyKat]

Thanks for the update mlp!

I have read of Remicade being given at a reduced dose at four weekly intervals, not sure if that is what they are talking about with you though.

It's good to know you that you have two specialists that you like! That is priceless!

Dusty. xxx