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Decreasing remicade amount.

FrozenGirl

FrozenGirl

Has anyone gone on an increased dose or shorter time between infusions then gone back? Any experiences

Quick summary of me and remicade. After mezavant (Lialda) prednisone, and Imuran were found not to be effective enough I moved to Remicade. First 2 doses did absolutely nothing, prior to dose 3 my GI did a serum level test and found almost no remicade. I had my third dose, which did nothing so I moved directly to every 4 weeks. After my first non induction dose kinda worked I went to a double dose every 4. It made a high difference but doesn't relieve all my symptoms.

Fast forward I'm coming to dose 10 and on dose 9 I called my GI. He asked how I was I said decent but still going 3 times a day and blood, with worse symtoms coming up to four weeks. I did another levels tests but the form said reason for levels test: deescalation. Appt at the end of Jan, haven't got results yet.

Now I'm panicking. I understand it's not a standard dose but it works better than anything else. Has anyone else decreased the dose or increase time between from 4 to longer or the standard 8?
 
nogutsnoglory

nogutsnoglory

Moderator
The standard is every 8 weeks. There are some on 6 weeks and fewer monthly but it's at the drs discretion as to the dose and schedule.
 
Clash

Clash

Usually, if you've tested to burn through the doses quickly then they won't lower your dose or space the med out further. It could be that he put deescalation for purposes of wanting the test approved. If at that dose and schedule you are still having symptoms has he looked into add I g and immunosuppressant like imuran/6mp or methotrexate?
 
Clash

Clash

Regardless of the test I doubt he would make any changes without your input. I would make sure he was aware of all your concerns when the results come back.

Good luck.
 
DJBHeat

DJBHeat

I was originally put on 10 mg/kg every 6 weeks, then lowered to 7.5 every 6 weeks, and eventually 7.5 every 8 weeks. I notice that in week 7 or 8 I start feeling the symptoms so I'm in the process of talking to my GI to change it to back to every 6 weeks.
 
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