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Will A Extra Infusion Of Remicade Be Safe While On Remission?
I have been on the 10 mg dose of Remicade for my severe, fistulizing Crohn s disease since 1999. I was one of the first 100 patients put on the drug after it was released to the general patient population by the FDA. From 2010 to 2012 I was getting Remicade in an infusion center. Before that, in my doctor s office: my doctor even taught me how to mix my own drug. The infusion center, dropped the ball and for three months in a row, gave me the five mg dose. I became very ill. I asked the nurses in the infusion center if I was getting my full dose? After a lot of shuffling around, they said, I was getting what my GI ordered. I ve been with my GI for 15 years but I think he will support the infusion center staff and not me. The infusion center has since closed. My question: I went from a high degree of wellness to totally down the tubes. I asked my doctor to order one extra infusion of Remicade so I could infuse while I was still in remission. I ve been trying to get this extra infusion for two years now. It takes me one week to get into remission and, if I m lucky, I m in remission for two weeks, and the forth week, I m out of remission. This is all since the infusion center dropped the ball. I said it made better sense to try to make the Remicade work again than to abandon a therapy out of hand that had previously been so successful. I think my doctor, who has since become very famous, will dump me rather than try to get that extra infusion for me. I m determined to get it. What should I do?
Thu, 4 May 2017
Hello and welcome to HCM,
I appears that you not only suffer due to your Crohn's disease, but also are very frustrated by the Remicade dosing issue.
I will try to explain the effects of Remicade to you, and hopefully this will change your perspective on this whole problem.
Firstly let me quote the Remicade dosing guidelines in Crohn's Disease.
"The recommended dose of REMICADE is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks thereafter for the treatment of adults with moderately to severely active Crohn's disease or fistulizing Crohn's disease. For adult patients who respond and then lose their response, consideration may be given to treatment with 10 mg/kg."
If I understand correctly from what you wrote in your question/concern, your infusion of Remicade was given every month/every 4 weeks. This is already twice as frequently as the recommended every 8 week schedule.
In your current schedule of every 4 weeks injections there is no room for any extra doses.
Also , any extra dose at this time would not make up for anything that might have happened 2 years ago.
It is quite common that patients with Crohn's disease stop responding to Remicade. This is most likely what happened to you since you have been on this medications so long. From what you write the medication is effective in you only for a brief time - about 2 weeks out of the month.
So in my opinion you should consider discussing with your doctor other possible options for treatment of you disease - instead on insisting on getting an extra dose of Remicade which is not likely to make any difference in the overall activity of your Crohn's disease.
Hope that my explanation will help you.
Regards and best of health.
I appears that you not only suffer due to your Crohn's disease, but also are very frustrated by the Remicade dosing issue.
I will try to explain the effects of Remicade to you, and hopefully this will change your perspective on this whole problem.
Firstly let me quote the Remicade dosing guidelines in Crohn's Disease.
"The recommended dose of REMICADE is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks thereafter for the treatment of adults with moderately to severely active Crohn's disease or fistulizing Crohn's disease. For adult patients who respond and then lose their response, consideration may be given to treatment with 10 mg/kg."
If I understand correctly from what you wrote in your question/concern, your infusion of Remicade was given every month/every 4 weeks. This is already twice as frequently as the recommended every 8 week schedule.
In your current schedule of every 4 weeks injections there is no room for any extra doses.
Also , any extra dose at this time would not make up for anything that might have happened 2 years ago.
It is quite common that patients with Crohn's disease stop responding to Remicade. This is most likely what happened to you since you have been on this medications so long. From what you write the medication is effective in you only for a brief time - about 2 weeks out of the month.
So in my opinion you should consider discussing with your doctor other possible options for treatment of you disease - instead on insisting on getting an extra dose of Remicade which is not likely to make any difference in the overall activity of your Crohn's disease.
Hope that my explanation will help you.
Regards and best of health.
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