Anyone? Having Triple dose Remicade Treatment?

I am a bit of a freaked out Mom right now. Daughter diagnosed at age 17 with Crohns/Colitis. Just a month shy of 26 now. Been on Remicade for almost 5 years, last year has been double dose and even that seems to be losing effectiveness. Daughter had appointment with GI today and she emailed me to say that next infusion will be Triple Dose.

I haven't heard or read of any patients doing triple dose and wondering if anyone here is. Remicade scared the daylights out of me 5 years ago but all went well. By the time double dose was being used I knew it would be Ok, but the thought of Triple dose makes me edgy. Seems like overload to me.

For some reason, this particular GI doesn't want to try Humira. He claims that if Remicade is no longer working that Humira won't either which I really disagree with with all I've read of patients doing quite well on Humira after long stints on Remicade.

Soooooooo......anyone here gone the Triple Remicade route?? I'd love to hear from you so I don't have a panic attack!

I am losing effectiveness with the remicade too. I was acutually at the time one of the first kids to try remicace for crohns here on the west coast. While i was in the hospital at that time it took my parents a week to decide if remicade was worth the risk. At the time they said you can only have it once in your life. Then about a year later they said studies show we can do it more frequently.

I also was on a double does for the last year and do it every six weeks. I just asked my doctor if I too could switch to Humira and he said he does not want to switch me to Humira at all if the remicade is even helping the slightest. I dont know why he does not want to try it. I havent asked why yet...but are you with kasier. I am starting to think either maybe he makes more "commission" from the pharmiuitical companies, or its not on the approved list for kaiser. I just dont know , but i too would like some answers from him.

I dont know if a triple does is worth it. Would that make us 3 times more likely to develop something terrible from it?

Kep me posted on what you decide? and if your doctor explains why better. Hope you get some relief soon!

Hmm...well I have never heard of a triple dose, but I have done a double dose in the past. I once had two remicades within 4 weeks of eachother and it didnt kill me...so I am thinkin that your daughters doc wouldnt prescribe something if she thought it was waaay harmful, or even somewhat harmful. Best of luck!

i've done a few double doses. i've done single doses 2 weeks apart. never heard of a triple dose. imho, if you got to do a triple dose it aint working. i only did the double to try and close a fistula to the bladder in a last ditch attempt to avoid surgery. didnt work. it took many years but it eventually lost its effectiveness on me. i havent used it since december 2006.

MaryS said...
He claims that if Remicade is no longer working that Humira won't either which I really disagree with with all I've read of patients doing quite well on Humira after long stints on Remicade.

Actually, a very similar statement was made to me when Remicade stopped working for me and the GI was discussing the move to Humira. There is some evidence that based on the reason for the loss of efficacy, the odds of Humira working or a patient having an adverse reaction are greatly lessened. At the time I believe my GI gave me only a 15% chance of having success on Humira due to the type of reaction I had towards the end of my stint on Remicade. He was proven correct as I had a whopper of an adverse reaction after the 7th injection of Humira.

I will try to find the stats on this as I did have a discussion with the PA that admins the Remicade there and he said there was a study showing these outcomes.

Hmmm, very interesting, as I have always thought that humira would be my next move after the remiade stops working.

It makes me feel better about the dr...that he is at Mt. Sinai. :) I guess I might be inclined to give it a try then.

Parkersmom,

GI's thinking is of not hopping to Humira right at the moment is to get symptoms under control first with triple dose of Remicade and then possibly Humira would work better starting with a healthier slate and possibly Daughter could be in 20% that does well with Humira after long term Remicade.

I myself seem to read more about patients who do very well with Humira after Remicade instead of the other way around. But I guess key is, what state was the patient's disease in when they started the Humira.

Many do not do well on Humira because they didn't do well with Remicade. But then again, there are the patients who couldn't tolerate Remicade, but Humira worked fine. So confusing!!!!!!!

Mary,
After a few hours of reading, I have found the information regarding the info about Humira's ability to work if a patient fails on Remicade:
"The message of the GAIN trial is that clinicians can use adalimumab as a treatment for patients who were previously responsive to infliximab but now are refractory to or intolerant of it. However, fewer patients will respond than those who responded to infliximab initially and only a minority will achieve remission. The medical management of Crohn disease after the patient becomes refractory to anti–TNF- antibodies is a major challenge for the inflammatory bowel disease research community." From the Annals of Internal Medicine, 19 June 2007

Also, I think you might find reading the following article helpful. It is full of statistics which makes for slow reading. I do think you will get a better understanding of the lack of response to Humira in some of those previously responsive to Remicade.

Crohn's Disease In Patients Who Fail Infliximab Therapy: What Does The Future Hold?

Best wishes to you and your daughter. ~~ Ides

I don't know about the double dosing wither. I was on 10mg every 4 weeks and had pre-meds. I had no problems with Remicade other than it lost its punch after 3 1/2 yrs. My gi would start me on Humira because of Remicade failing me. He said most likely Humira would not help me. Susie

When first educating yourself on Remicade it does seem like a scary adventure. My Daughter has been on it (also Imuran and Asacol) for almost 5 years. Remicade was like an answer to our prayers after her IBD health floundered horribly for 4 years before Remicade. She has had no reactions, but it is different for everyone as to how long it stays effective.

Different GIs have different protocols on how they start the Remicade process and how it continues. The most often used is 3 beginning loading doses at 0, 2 and 6 weeks. After that every 8 weeks is pretty much the norm. When Remicade was working super well for my Daughter she could go 10-11 weeks in between infusions.

Usually, but not always, different from patient to patient, either 6MP or Imuran is usually used at the same time as Remicade. Supposedly helps the Remicade work better and acts as a bridge in between infusions.

In all my reading and researching thus far (8 years worth) Remicade is safe to use during pregnancy.

You really need to do your research on Remicade to get comfortable with it. Lots of firsthand experiences here on the Board to read, but going to the CCFA website and Remicade website will fill in a lot of info for you too along with your GI. So far, Remicade is the only thing that has offered my Daughter a very nice remission. Unfortunately, because of her length of time on it, it is losing its effectiveness, which is normal and expected. She has been on double dose of Remicade for almost a year and she is
shortening the time in between her infusions to 6-7 weeks to try and keep it effective as long as possible.

Hope you get to your full fledged remission soon!!