Anyone? Having Triple dose Remicade Treatment?

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MaryS
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Date Joined Jan 2003
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   Posted 2/4/2008 4:30 PM (GMT -7)   
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!

bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 2/4/2008 4:34 PM (GMT -7)   

i only went on double doses. my doc wouldnt put me up anymore than that, or any closer together. it does seem like a lot but if the doc is comfortable with it, i wouldnt worry too much.

 

bunny


Crohn's Disease Diagnosed 12/24/03 and Bipolar, Migraines, Hypothyroid
Im 26 years old, and am currently only taking Levisin, Clidinium and nexium for my CD. I'm off my remicade--nervous. I am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes. And now i also am hypothyroid, anything else?!


Maverick747
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Date Joined Jan 2008
Total Posts : 14
   Posted 2/4/2008 5:10 PM (GMT -7)   
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!
DX with CD 1996
Been on too much to list, Currently taking Remicade/6 weeks, Reglan, Prilosec, Pentasa, and a few other things.
2 surgeries
Age 24/ Male/weight sadly down to 100lbs


chroniemomx2
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Date Joined Apr 2005
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   Posted 2/4/2008 6:37 PM (GMT -7)   
I am on a double dose now. I have been on remicade for over 3 years....just the last 6 months on a double dose. Personally, I dont think I would do the triple dose....it is nothing scientific...I just wouldn't be comfortable with that much remicade.

Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 2/4/2008 6:43 PM (GMT -7)   
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!
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/4/2008 7:27 PM (GMT -7)   
I would be careful with the "well, her dr. prescribed it.....so it must be ok..." There are a lot of drs out there that don't know what they are doing....

CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 2/4/2008 7:41 PM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/4/2008 8:10 PM (GMT -7)   
Thanks for the responses! Just as I thought, everyone thus far have only gone as far as double dose.

I am trying real hard to trust my Daughter's GI. I feel he knows what is doing. He is a highly respected GI, Immunologist, Researcher and Educator out of Mt. Sinai in New York which is also a well known IBD Research Center.

In finally getting to talk to my Daughter, this particular GI claims he has patients on Triple and even QUADRUPLE
doses of Remicade. How scary is that?? He claims there is no significant increase of side effects at higher doses to report.

My Daughter has been trying to get switched to Humira, but her GI keeps holding her off. He claims at the moment that he would rather get her under control with triple Remicade first and then the dosing for Humira
once she feels better will be more easily calculated.

Single dosing became less effective for my Daughter a year ago. Had a good 3 year run with single dose though. Double dosing worked well for a good while but the spacing has been getting down to 6 weeks. Not the same zippity doo da feeling anymore even with double dose and shorter spacing. More symptomatic in between.

Still hoping for someone to post who has experienced triple dose!!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/4/2008 10:26 PM (GMT -7)   
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.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/5/2008 6:35 AM (GMT -7)   
Thanks Ides. I am learning more of what you are saying to where only 15-20% of patients will possibly do well on Humira after Remicade. I didn't realize that the percentage was so low as I was basing it on what I read on the IBD Boards that I visit and it seemed more like 50% to me.

Still trying to connect with someone who has done triple dosing which I am not finding very easily and thinking I won't.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/5/2008 8:30 AM (GMT -7)   
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
Regular Member


Date Joined Feb 2007
Total Posts : 41
   Posted 2/5/2008 7:59 PM (GMT -7)   
I think a triple dose of Remicade is very scary. If there is an option for a patient (Humira) why would a doctor force your daughter to do that?
 
Remember there the clinical trial that looked at patients that had lost efficacy with remicade or had to do these double/triple doses. Although it was only 20% of patients, that was for TOTAL remission for patients.
 
There are LOTS of patients that are doing well on humira after Remicade!

MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/5/2008 8:43 PM (GMT -7)   
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!!!!!!!

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 2/6/2008 1:47 AM (GMT -7)   
I am really not sure what everyone is talking about when they say double or triple dose.  I have been on remicade for nearly 4 years now and have never heard it referred to as double or triple dose.  I have heard it referred to by ratios of 6, 8, and 10 to every lbs.  I have been on the max dose of 10 to every lbs. every 4 weeks for the past 3 years.  I was told by my G.I. that you can not raise the dose or frequency anymore than what I am on.  It is not always easy recovering from each infusion, but adding benedryl and phenegran as premeds has really helped me out.  A few months ago, I was also started on methotrexate injections, which seems to help the remicade.  about a year ago, I tried to make the switch to humira, because my remicade was only lasting about 2 weeks.  I got really sick and decided that 2 weeks of remicade was better than the sickness that I was getting from the humira.  When I switched back, the remicade was actually more effective, or atleast I recognized what it was doing for me more now that I had lived without it.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/6/2008 5:26 PM (GMT -7)   

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 antiā€“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


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/6/2008 5:54 PM (GMT -7)   
Thanks Ides!!

straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 2/6/2008 11:34 PM (GMT -7)   
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


mousetyme
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/12/2008 2:26 PM (GMT -7)   
Ok, so I am back in flare up after being off prednisone for 17 days. ( was on for a year)  The doc started me at 20 mg again.  I spoke to him and he wants to do a test to see my 6 MP levels before deciding what to do next.  I have ben on 6 mp since March 25 2007.   I take 100 mg's.  I thought I was doing well on it but without the prednisone, well I guess I wasn't.  I decided to do some research on Remicade in case the 6 MP is not my drug.  I am so confused and worried about it.  How often do you go in the beginning? I have heard about reactions to it, what does that mean? How about pregnancy and Remicade? My specialist out of Mt. Sinai says she is ok with me on 6 MP and having a baby. Scary, I know. My current doc (GI) is also out of Mt. Sinai.  He has been great.  I wondered why he chose 6 MP instead of Remicade. It sounds like there are lots of potential issues with it. Any info would be great!
Diagnosed with UC(pancolitis) last year after 8 years of VERY managable UC(left sided)
Sinus Thrombosis and Amemia
Drugs: 6MP, Asacol 12 3x's a day, nexium, iron supp., Vitamin D and Calcium
Slowly getting better, 2/3's of the way to remission!
 


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/12/2008 4:00 PM (GMT -7)   
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!!
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