When to give up on Remicade?

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mtgman
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   Posted 5/26/2010 10:05 PM (GMT -7)   
ok so i had my 3rd infusion a week and a half ago.  i have not noticed any improvement in my symptoms over the past couple of months since i started.  i know most people don't react super fast to Remicade but i was hoping to see SOME improvment by now.  i know they can up the dose etc, but any thoughts on when to throw in the towel with the Remicade?  I'm not having any negative reactions so that's not the issue.  I'm just praying it starts to work soon.  Thanks!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


mmckenna
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Date Joined Jan 2006
Total Posts : 725
   Posted 5/27/2010 10:18 AM (GMT -7)   
Hmmm, hard to say. I was one of those that saw improvements within a few days after my first infusion. I know they say that it takes at least 3 doses before you have enough in you for it to be working at full strength. I'd say give it a few more.

I did fine on it for about 3 years, then they had to double the dose to keep it working. Just recently had to stop the infusions due to some other issues, but it was a great drug while I was on it.

Hang in there, I hope it kicks in soon.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/27/2010 5:00 PM (GMT -7)   
Did you have the loading doses: First infusion, then the second infusion two weeks later, and then another infusion 6 weeks after the second? Then the infusion interval goes to every 8 weeks. If you didn't have the loading doses, then I think it might take more time for you to see results. I wouldn't give up yet.

If you did have the loading doses, then you might benefit from a larger dosage. The typical dose is 5 mg per kilogram of weight. When I began to lose response to Remicade my dosage was upped to 7mg/kg.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 5/27/2010 9:07 PM (GMT -7)   
I was told 6 months. I didn't start to feel better until about a week after my third infusion. IIRC.  Remember to consider how ill you were before you started the infusions.  I was improving so subltly that I didn't full realize how far I had improved at first until I thought about how sick I had been.....


mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 5/27/2010 10:00 PM (GMT -7)   
thanks all. i am definitely not noticing an improvement. in fact the past couple of days have sucked. a lot of blood and severe pain when going to the bathroom- so bad i puked once. i did do the loading doses- 3rd was last Monday. I'm going to follow up with my doc next week to see about upping dose...not sure if he'd want to do that so soon but of course i'd rather be proactive about it.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


mmckenna
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Date Joined Jan 2006
Total Posts : 725
   Posted 5/27/2010 11:32 PM (GMT -7)   
It never hurts to ask, and showing the GI that you are doing your homework will look good.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/28/2010 8:26 AM (GMT -7)   
Personally, I wouldn't give it much more time...When I started Remi I felt better within two days. I developed an allergy and had to stop but if there's no improvement at all I'm thinking there might never be.
Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002. Was in flare from 2006-2010 with almost no relief from any meds I tried.
Three abscesses that are now fistulas, with three setons! All gone as of March 9
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction
On: Zoloft, Abilify, folic acid, b12, vitamin c, multivitamin

3-9-10: Total protectomy and Sigmoid colostomy installed. Haven't spent more than 3 minutes on the toilet since- it's fantastic! Now I'm just waiting to get regulated so I can irrigate.


Tebasaki
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/28/2010 10:42 AM (GMT -7)   
Did you do the load-dose to start out with? I immediately got results in the first few weeks of getting the load-dose. I also stopped using it when I reached the maximum you can have and it had no effect on me. (But previously did.)

1asalsa
Regular Member


Date Joined Feb 2010
Total Posts : 40
   Posted 5/28/2010 3:17 PM (GMT -7)   
Just a thought, because I don't think this happens very often, but did the Asacol help at all before?  I am one of those people who cannot tolerate any form of Mesalamine/asacol/lialda etc.  It makes my symptoms worse; I had been on it for 7 months, first with rectal suspensions, then orally.  When I stopped it, the bleeding stopped, and so did other side effects like taste perversion.  I got a second opinion months later, was put on Lialda, and after a week or two, the cramping and bleeding started again.  Finally the doctors realized that I couldn't take any form of mesalamine and stopped pushing it.  After that, I tried 6MP and  Imuran, had to get off that, too, and am now on Remicade alone, which seems to be working the best so far.  It did take a couple weeks after the 3rd dose to work.

Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 5/28/2010 4:19 PM (GMT -7)   
For me later the day of my first infusion, I started to feel better.
Diagnosed Crohns 02. Just had a resection April 20th 2010. Two sections removed had a fistula into the bladder. Also have a temp ostomy. GI said I could stop the 6mp, but going back on remicade.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 9:06 AM (GMT -7)   
i did the loading doses. i think i'm going to have to chat with my gi to see if we can up the dose- if that doesn't work looks like it's on to the next option...
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


Zanne101
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/29/2010 9:57 AM (GMT -7)   
Hi, just popped in on this while looking for dental problem info relating to Crohn's. I do have a general question for all. Have any of you gone Gluten-free? I ask this because Celiac Disease/Gluten Intolerance can cause symptoms of Crohn's and many other diseases. I noticed that a lot of you have multiple immune problems. I have gone Gluten-Free in the last year and it has made a big difference. I still do my Remicade, Asacol, Colestipol etc, but have much less other problems since. I also have Lupus and Sjogren's, but they are also better since going GF.
It's not easy going GF, and I cheated the first time I tried to do it, but now I am totally GF and feel much better.

Just curious.

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 10:02 AM (GMT -7)   
and this relates to this post how?
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


Zanne101
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/29/2010 10:16 AM (GMT -7)   
I thought it relates because if someone is having problems with meds not working or lessening in effect, this might help some people. I have gone through lots of problems with meds over the years because of the undiagnosed Crohn's, Lupus etc. But I am doing much better and the Remicade etc. seem to be working better since going GF.

Being Gluten intolerant can wreak havoc on your body. If something is blocking your body from using Remicade to it's fullest, then you might have problems getting relief. I did not have an immediate response to the Remicade, it took quite a while, but being GF has upped the relief I'm getting. I will be asking my Dr if we can lower the dose soon.

If you want to know what Gluten can do to your Crohn's etc, look at some Celiac sites. Even if not diagnosed with Celiac you could be Gluten intolerant and no one would pick up on it. Here's a list of some symptoms http://surefoodsliving.com/celiac-disease/symptoms/

You could also do a food diary and try food elimination diets. All of this can affect your treatments. So while you're trying one new treatment after another, it could be a food-based reaction.
BTW, I started getting sick in high school and it took me until I was 60 to get a diagnosis. it took until 61 to get some relief and after years of research, going GF is one of the best things I've done lately (and something my Dr wholeheartedly agrees with). If you didn't have Gluten intolerance before, you may have it now because of the damage to your intestines.

Just thought it might help - didn't mean to step on anyone's toes.

Post Edited (Zanne101) : 5/29/2010 1:19:32 PM (GMT-6)


mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 3:39 PM (GMT -7)   
how long did it take before the remicade started to work for you?
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


Zanne101
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/29/2010 4:49 PM (GMT -7)   
It wasn't something where I could say definitely a month, 2 months or ? I was on heavy doses of Asacol after coming out of emergency bowel resection, so I was a mess already. I had multiple fistulas and abscesses. After I got somewhat stabilized and my gut was out of post-op uproar, then I was put on the Remicade. I do know it wasn't immediate. I want to say it was about 3 treatments before I felt a little better. It has steadily gotten a little better, but really changed after I went GF. That too, was not immediate. It all took time for me, definitely in stages.

I have a cousin who was on Remicade for years, but it was no longer working too well for her, so she's now on Humira. But other people can't tolerate Humira or get no relief from it so it's a toss-up.

This is why I comment about food intolerances. It doesn't matter what treatment or meds you're on, if you're fighting against your body's own healing possibilities. Your body wants to heal itself, but you have to help. You can't isolate just one thing as the problem - it's always multi-faceted. I didn't think this way for a long time. Lots of research, meetings, talking to lots of folks - I have learned as much as I can and keep updated on anything new. I like having some control over my own body. Drs have their own set of prejudices regarding diseases.

The other thing you have to think about is that European MDs are all taught about this gluten/food intolerance problem and how it affects the rest of your body. But U.S. Med Schools have never gone into it. My GP actually still thought that Celiac was a disease of children. Celiac and Crohn's overlap. Luckily I found a GI Dr who knew about gluten.

You're in AZ. I've been trying to move out there - you have the Integrative Med. Ctr at ASU in Tucson, where Dr. Weil set it up. That is going to be my first medical appointment. If you can get there, unless you don't ascribe to his methods of medicine, you might find some new ideas and/or help in treating your situation.

BTW, when I finally got tested for Crohn's, my doctor was amazed. He said he had never seen numbers that high for a Crohn's result in all the years he's been a Gastroenterologist.

So do your research, ask lots of questions and try to help your body. Maybe your next treatment will be the one where you notice a difference. My Remicade dosage is double what most people get, according to my nurses, so maybe your dosage needs to discussed with your Dr.

Good luck, hope something good happens soon.

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 5/29/2010 8:10 PM (GMT -7)   
mtgman I think you might be rushing this a bit. I was told specifically that I should be on remicade for 6 months before deciding if it was working. Never hurts to talk to your doctor about dose or whatever you want but don't give up. Also I found my improvement came on slowly and I really had to stop and think about how bad it was before to realize that I had improved. Luck
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 10:17 PM (GMT -7)   
thanks for the info everyone...i'm just so frustrated as i'm sure a lot of people out there are...i'm having severe pain in my gut when i have to go to the br...puking it hurts so badly...also a bunch of blood...trying to keep my chin up-- i just guess i was hoping Remicade would be my "miracle" drug...
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 5/30/2010 3:49 AM (GMT -7)   
Mtgman, I know that it is really hard to stay positive and that you want to see results so badly but please realize that it is going to take some time.There are changes being brought on by the remicade that are so subtle that you will not even realize that they have happened until you are off of it. You are just finishing up the loading dose and it is way too premature to even consider the drug a failure. If your doctor is experience with Remicade, he or she will know when it is time to increase the doseage, increase the frequency of infusions, or add premeds to your regime. There is also the option of adding methotrexate or 6 mp to medicine plan to increase the effectiveness of the Remicade. There are still so many options and you need to stay positive and patient.
If you are puking a bunch of blood, you need to contact your G.I. asap to let them know that. They can do an endoscopy to find out if you have a tear in your esophagus or a bleeding ulcer that needs treatment. There are are medications that you can take that can help with the severe pain and nausea. If your G.I. will not prescribe pain medication, call your Primary Care and get them involved to treat your pain. Most G.I.'s are hesitant to get involved in prescribing pain medication but are supportive if prescribed by another doctor. They will prescribe antispasmotic meds or nausea usually without any hesitancy. I suggest having them look into an antispasmotic like librax, levisin, hydroscamine, or bentyl to help with the puking and something like zofran or phenegran to help with the nausea.
As for the person posting about celiacs and something that does not have anything to do with this subject I would suggest that you start another thread. To be honest it looks like you are trying to advertise for something but if it is a legitimate thing there are celiacs boards or you can start your own thread on this board. No problems with asking question because that is what this is all about but let mtgman keep his thread on subject so that he can get his questions answered.

Zanne101
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/30/2010 4:22 AM (GMT -7)   
tsitodawg:
Obviously, you didn't read my whole posts with an open mind. I was trying to show what helped me with my Remicade treatments and might speed up relief from it. So, if no thought other than piling on more meds is what you consider a solution, so be it.

I have Crohn's, not Celiac Disease, but my doctor knows about the overlap, do you? Obviously not.

I will take myself off this thread permanently.

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 5/31/2010 10:23 PM (GMT -7)   
thanks dawg- the blood is not from puking- actually when the pain is so bad and i do puke it's rarely "food"...it seems mostly like bile or something...the blood is from the other end. pain was so bad sun am i went to the er- morphine in the er and percs to go...ct scan showed no blockage- not sure what's going on. i want the remicade to work so badly...i'm not going to give up on it but i do need to find some way to get some pain meds until this pain issue is resolved. calling my gi tomorrow of course but i can't be puking at work in the can everyday due to the pain and of course we're going on vacation in two weeks and there's no way i can let my 5 year old daughter down!!!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


Alkov
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/14/2010 5:47 PM (GMT -7)   
I have been receiving Remicade infusions  monthly for two years for a rare autoimmine disease   Which had blinded my right eye and was affecting the left eye.
 
The infusions  prevented the eye inflamation, but I was having  infections in the  kidneys . which responded well to antibiotics
 
I then developed a Squamous cell carcinoma on  my lower lip.
I discontinued  Remicade treatments and the cancer has began to go into into remmision.
Presently i am being  monitored and the  doctors hsve postponed  surgical treatment for the present.
 
 

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/14/2010 8:52 PM (GMT -7)   
wow- i hope you continue down the path to kicking that cancer's butt! my mother in law beat it about 9 years ago!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 7/16/2010 9:42 AM (GMT -7)   
It took about 4 infusions before I noticed a real change in my symptoms. It really took awhile for me, over 6 months to notice a significant change. Just got back from an infusion, actually, and July 24th will mark my two-year anniversary of being on Remicade. Stick with it. Honestly, after 3 I didn't really notice a difference.
Pentasa- 4 g q day; 1/08; Percocet
Remicade 1st infusion 7/24/08
Ultram ER 200mg; omeprazole 40mg; Xanax-ANXIETY; Effexor ER 150 mg
Hope this clears up soon, I want to start having babies!

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