Frequency of Remicade Infusions?

[crohns0249]

I started Remicade several months ago, and am coming up on my 4th infusion. As my Doctor is attempting to span out the time between when I get infusions, I felt as though, although towards the time when I would go for the infusion my symptoms would increase, I could handle it for the most part. But this time I was supposed to have 6 weeks in between. At four weeks I felt completely terrible. I felt exactly like I felt before I was diagnosed. I was terrified that things would wear off and I would end up hospitilized again. I ended up calling my doctor and explaining the situation and have been given an appointment for an infusion at my 5 weeks mark (which is in a few days thank god.) However, when I talk with my doctor I am afraid he will tell me that I need to attempt to wait the 6 weeks again. My question is how do the doctors determine the frequency I will get Remicade? I know it's different for everyone, and he told me from the beginning that they often hope to see patients only need it every 12 weeks. I would love to not have the inconveninece of getting treatment every 4 weeks, however, I don't want to keep having the symptoms so I'd much rather feel good and get it every 4 weeks than make myself miserable and feel sick. How do I convey this to my doctor? What if he insists that I try and wait again? I'm starting college this spring. I had to postpone college this semester because I was so sick already, I don't want to have to do that again. :confused2:

 

[Dukeis]

When I first started remicade I took 5mg/kg every 8 weeks. That worked for 5 years. Then they increased it to 10mg/kg every 6 weeks. That dose was doing great, but I had to stop remicade because of a fungal infection. Not sure how they determined how often I would get it. They doctor that started my remicade was one of the ones that did a lot of the clinical trails for remicade here in the US. I was never in a trail per say, but at times felt they used my treatment as if I was for post market research.

 

[Clash]

My son also had to increase his dosage and tighten his schedule to every six weeks. At one time he was making about 4 weeks and then symptoms would return. We are early in on adding methotrexate to the mix and so far he has made it the six weeks without any symptoms returning.

 

[shamrock15]

If I wasn't on gov't funding here, I would be trying to stretch mine out now. I am on 7 vials every 6 weeks and think I might be able to go longer. However, the majority of my remicade is covered jointly under my wife's insurance and provincial insurance. Getting anything changed is massively difficult to do. Too many people have a finger in the pie, and none of them talk to each other with me trying to coordinate while working full time for the first time in 6 years.

For me, I felt after the first few infusions that I was always running about a week short. I had to tolerate about a week of feeling miserable before the infusion, and then it needed a couple days to feel good again. It does take time to get fully up to speed for many of us. You are early in the program, so hopefully it will start to work soon.

 

[mitsudrew]

Are you only on the Remicade? It's common for GI docs to put patients on Imuran along with Remicade. The Imuran might help a bit if your not already on it.

My first Remicade infusion was April 2004 and I was on Imuran at that time. My dose was 5mg/kg every 8 weeks so depending on your body weight. One of the bad side effects of the Remicade is that it suppresses the immune system so your obviously more likely to get the flu and common colds. I would guess that your GI doc probably wants to see how your body is responding to the Remicade since you've only had 3 infusions and if your having any allergic reactions. Thankfully Imuran and Remicade worked well and I eventually tapered off the Imuran after a few years because my Crohn's went into remission and I was getting common colds every month because of these two immunosuppressive drugs. Now I'm just on Remicade and im doing well Thankfully!

Hang in there and give it some time. I'm in college as well and I couldn't image having symtoms and being in pain and discomfort. So I feel for you.

Andrew

 

[2thFairy]

Most everyone starts on Remicade at every 8 weeks (after the initial 3 doses) and then the doctor adjusts the dose and time span depending on your symptoms.

Remicade never really did the trick for me and at the end I was on 10mg/kg every 4 weeks. You do have room to adjust things with your current dosage and time interval, so don't lose hope just yet.

 

[annawato]

In Australia its every 8 weeks and thats it. Because it is funded by the government there are very strict prescribing guidelines and the doctors cant change it even if you are getting symptoms earlier. They consider that a treatment failure and just take you off it.

 

[2thFairy]

In Australia its every 8 weeks and thats it. Because it is funded by the government there are very strict prescribing guidelines and the doctors cant change it even if you are getting symptoms earlier. They consider that a treatment failure and just take you off it.

Yikes!!!

 

[annawato]

exactly!

 

[tots]

I am getting 7.5 (just moved up from 5mg) every 8 weeks.

I think they decide how far apart your infusions should be are how long you can go with-out having any symptoms.

Lauren

 

[moogie]

In Australia its every 8 weeks and thats it. Because it is funded by the government there are very strict prescribing guidelines and the doctors cant change it even if you are getting symptoms earlier. They consider that a treatment failure and just take you off it.

that is really short minded.

In Canada if you do not have insurance it is paid by the government however the doctor says what you need not a bureaucrat. that's nasty...

I've been going from 8 to 6 and now back to 8 weeks. whatever it takes for me to feel good.