I'm scared that Remicade isn't working so well anymore

Hi everyone,

I'm new here. I've actually never posted on a forum before but I wanted to see if other people have experienced the same thing as me. I was diagnosed with severe UC (pancolitis) in January 2010. I was initially given Prednisone which was absolutely horrible and I was allergic to most of the 5ASA's (Sulfazine, Colazel, Apriso, Lialda).

Last summer I started Remicade because the inflammation had spread to my joints and I had severe arthritis symptoms in my hands and arms. The Remicade worked AMAZINGLY well for about 6 months. I was in completely remission and it was like I was never sick. Last month though, I had to get my infusion at 4 weeks instead of 8 weeks because I was going into a flare. Now I've been flaring for almost 2 months and the increased frequency of the Remicade (and higher dosages) doesn't seem to be helping at all.

So my main question is this: for people that have successfully been on Remicade for a long time, has there been a period of time during your treatment that the Remicade didn't work so well, and then it went back to working? I'm a little scared because I've heard many stories of people for whom Remicade worked for a while and then it just stopped working altogether. But I haven't heard as many stories about people who had it stop working for a while, and then it went back to working just fine. I'm hoping this will be the case for me. My doctor is very optimistic that the Remicade really is working for me and that with each new infusion, my body is getting closer to remission. But it doesn't feel that way as I'm still flaring and in a lot of pain. Any success stories would be really awesome for me to hear right now.

My other question is about constipation. Last week after my Remicade, I became extremely constipated for 6 days. It was very uncomfortable but I thought it would "work itself out." Well, it didn't so I called my doctor yesterday and she recommended taking Colace in the evenings. I did take it last night and it relieved the constipation but with a ton of pain along with it. Is constipation common with Remicade? Could it be a sign that I'm going into remission? My doctor seems to think so, and I'm awaiting another call back from her today to get her thoughts. But I wanted to reach out to a supportive community (which this seems to be) and see if anyone has first-hand advice or experience with this.

Thank you in advance for any responses you might have. It's nice for me to read through these message boards - obviously I am never happy that anyone else has UC as it's a horrible disease - but reading other people's stories helps me not feel so alone with this.

 

Be well,

SW

hhm, I 2nd Gavriel's post- it happened to me, Remi was a god-send for a year or sor, then just up & quit. Seems that when it starts to lose effectiveness, it goes pretty quick! I was totally freaked out, not really psyched to try Humira- what if that didn't work, then what???? But, happily enough, the Humira is keeping things pretty well in control, after 15 months. I have had other IBD related issues- abscess, fistula, etc. But day to day, my UC is pretty quiet.

SWfromNYC, I'm in the same boat you are...my remicade is wearing off around the 4th week (I get my infusions every 6 weeks) and my symptoms come back. I've been on it since April of 2010. My nurse told me they have never given an infusion before 6 weeks so I don't know if they will do mine sooner or not. There is a good possibility my body is starting to develop antibodies and Remicade is becoming uneffective. I'm going to give it another couple infusions and go from there. I have never been constipated while on mine.

I think there's an antibody test. Has your doctor ordered one? Anyone know if the antibody test is reliable?

SWfromNYC, I also hope you will be the first person I've heard from who went through an episode of responding well to Remicade, then not responding well to Remicade, and then went back to responding well to Remicade all over again!

The problem with the approved Remicade dosing pattern is that the half-life of the drug isn't really taken into consideration. For those of you that don't know, the half-life of a drug is the average amount of time it takes for the volume of the drug to halve itself in your body after its administration. In other words, immediately after receiving a Remicade infusion, one's concentration of Remicade in his or her bloodstream will be x mg/dL of blood. The half-life of Remicade, according to Wikipedia, is 9.5 days. What that means is that 9.5 days after administration, one's blood levels of Remicade with be one half of x mg/dL of blood. There is an ideal concentration of any drug in the bloodstream that induces its therapeutic effects, and the ideal administration of any drug tries reasonably to maintain this ideal concentration and minimize its fluctuation. Since typical Remicade administration is every 8 weeks, Remicade patients tend to experience great fluctuations in blood levels of Remicade over this eight week period, which can often lead to inconsistent results (such as feeling a resurgence of symptoms weeks before their next scheduled infusion). This is a big problem that will eventually be overcome, because approval for Remicade from the FDA or Health Canada (or other national health associations) is based on proven clinical studies that followed the six or eight week treatment protocol. So they can only approve what's been confirmed to be effective through clinical trials, which for now is 6 and 8 week cycles (sometimes with exceptions based on specific doctor instructions). Unfortunately, common sense is the first casualty of this bureacratic and robotic style of thinking.

Ideally, we'd take loading doses when starting Remicade to get our blood levels of the drug up to the best range (the therapeutic range where we experience relief, called the "therapeutic range" or "therapeutic ratio") and then take half the initial dose after approximately ten days to being us back up that level after our blood concentration of Remicade halves through regular metabolism, and then on and on.

I apologize if this was poorly or confusingly written, but the keyboard I use at work is terrible and I'm quite tired. I can elaborate more and explain this more thoroughly if people are interested. I hope what I wrote makes sense.

Post Edited (Gavriel) : 2/24/2011 9:39:54 AM (GMT-7)

Here's a simple mathematics example.

Assume Patient A receives 1000 mg of a drug, and that the half-life of this drug is ten days. After his first dose, he will immediately have 1000 mg of the drug in his body (assuming bioavailability is 100%). Ten days later, he will have 500 mg in his body. Now let's assume that the ideal therapeutic range of this drug is between 500 and 1000 mg. That would mean than after ten days he needs another 500 mg "boost" to bring up the quantity of the drug in his body back to 1000 mg. Ten days after the 500 mg "boost", the first dose of 1000 mg will then be 250 mg (because it took ten days for this initial 1000 mg dose to halve itself to 500 mg, and then 10 days later it halves itself again to 250 mg), and the 500 mg "boost" will be halved to 250 mg - meaning this patient will again be down to 500 mg total in his body. Do you see the pattern?

It can begin to get quite complicated, especially when the ideal therapeutic range is narrow and difficult to achieve. This is the problem with currently implemented Remicade dosing protocols, as I said earlier. Current Remicade administration protocols are based on systems that were proven effective in clinical trials, and not exactly on the ideal science based on what we know about drug half-life and therapeutic range.

I hope that makes sense.

No I'm not, but I majored in science for my bachelor's. I took another profession afterwards, though. I do enjoy science as a hobby, though. The principles of drug half-life and therapeutic range apply to all drugs, though. The unfortunate reality is that there are ideal dosing schedules that we're not implementing in many parts of the world simply because of the robotic-thinking I mentioned above.

I was on Remicade for a while and it just never worked for me. It was my last resort. I ended up having J pouch surgery and it was the best decision I ever made. (even though I didn't have much of a choice!) Life is good again.

Best wishes to you and I hope you continue to feel better.