Did it take THREE Remicade infusions?

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FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 3/16/2010 7:57 PM (GMT -7)   
My doctor is telling me that my progress is not good enough with Remicade and that if I don't improve more with the third infusion that all options are exhausted and I should lose my colon.  Has anyone found slow progress until the third infusion or dramatic improvement with the third infusion?

sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 3/16/2010 8:20 PM (GMT -7)   
I would see about getting a second opinion. Personally I can't completely remember how long it took, but I think it was around the third infusion that I *started* to feel better. It takes time to heal. I think that getting an ostomy is a last resort not to be rushed into. I would at least request to your doctor that you'd feel more comfortable giving Remicade a few months.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 3/16/2010 8:44 PM (GMT -7)   
I have had 5 infusions so far, week 1, two weeks later, 4 weeks, and 8 weeks, 8 weeks, but from Jan to March I have three flares that I had to bring down with prednisone, at the end of this week I will go for my 6th infusion. After this week, my doc has moved my spacing every 6 weeks. But, I am not sure if Remi is working for me, but I hope to keep at it for some time. But in my case I suffer from CD and not Colitis in the ileocecal valve area, even ostomy will not reduce the chance of recurrence, hence I have to be on meds. But from what I have heard in case of pure Colitis, not CD/Colitis, one can go for total colectomy and the recurrence of colitis is completely eliminated, but one has to have a bag for the rest of the life and that is different sort of challenge.

tsitodawg
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Date Joined Sep 2006
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   Posted 3/16/2010 11:21 PM (GMT -7)   
Iram, I think that you are thinking about Ulcerative Colitis. Crohn's disease is a life long illness and CD/colitis is just the type of Crohn's that is mainly affecting your colon but can still have an effect upon your whole G.I. tract.
As for the remicade and 3 times before giving up, I would think that would be a little soon before going to surgery and giving up. It took me about 6 infusions to really feel the full effect. There are so many variables to be added to it before considering giving up like dosage and frequency. When I first started at every 6 weeks it was way too far apart and went to 4 weeks. I was still not getting max effeciency so my doctor kept raising the dose till I hit 10 mg. Then we have been able to add certain medications like 6 mp and methotrexate to make the remicade work better after I began developing antibodies. The final think that we have started doing was premedicating with hyrocortisone and bendryl to help my body from fighting the remicade. This has given me many years on the medication and given me a chance to hold out until a new and more effective one is developed. There are just so many things that can be done that I feel you would really be robbing yourself of a potential help by giving up after only 3 doses unless you have a reaction.

FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 3/17/2010 5:16 AM (GMT -7)   
Thanks. I thought he was jumping the gun. I am starting to wonder about my doctor. I go for my third infusion on March 30th and I will not give up any body parts yet. You have really lifted a shadow off me.
 


PV
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Date Joined May 2006
Total Posts : 1177
   Posted 3/17/2010 10:00 AM (GMT -7)   
My husband started to feel markedly better after the second infusion. However, my husband was also on 120mgs of solumedrol when he started the remicade infusion, and as he started feeling better on the remicade, he was slowly weaned off the steroids.

Does the remicade help at all? Do you get better after an infusion for some weeks, and then you start feeling worse again? If so, upping the dosage of remicade to either once every 4-6 weeks, or doubling the amount of remicade per infusion (or both) can be tried to help push you into remission.

Another option is to add another med like Imuran/6-mp/MTX to help boost the effectiveness of the remicade. Also, if remicade doesn't work, you can try another one like Humira or Cimzia.

Hang in there, and I hope you start feeling better soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Iram
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Date Joined Jul 2003
Total Posts : 145
   Posted 3/18/2010 11:19 AM (GMT -7)   
tsitodawg: just to be clear that you are saying CD/Colitis (not UC) will not be cured through total colectomy or proctocolectomy or even ileostomy for that matter. My understanding was that these radical measures could be undertaken to achieve total remission, but it would require a life-long stoma. Yes, second-opinion or third-opinion is a definite must in case of these radical measures.

PV: My doc is hesitant to mix MTX with biologics, because of the potential risk for cancer, besides I am highly allergic to Imuran/6-mp. However, from what I hear Imuran/6-mp seem to be the best drug out there for keeping CD under long-term remission.

Next round onwards, i will be spaced every 6 weeks and then we will see about whether if they can increase dosage. They pre-medicate with tylenol and benadryl. The infusion center also goes very slow with the infusion because they found that if they speed up the rate of dripping, it causes reactions among patients.

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 3/18/2010 3:37 PM (GMT -7)   
I was on prednisone also but I did feel better after the second infusion. At this point though I have reached a level and am not improving. The level I am at is not good enough. I was hoping that it took three infusions for some other folks so that I needn't give up hope yet. I was on Immuran and it gave me pancreatitis so that is not an option. Also immuran with remicade can cause deadly cancer. Humira might be an option but based on what SR said I am going to stick with remicade a bit longer. 35 years with this disease I am NOT ready to give up my bowel yet.. The stem cell treatment sounds incredibly promising but dangerous. It needs a track record.
tsitodawg: Thanks for that info. I AM going to hang in there.
 


tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 3/18/2010 3:49 PM (GMT -7)   
Iram, Crohn and Crohn's colitis is the same disease and can not be cured by any surgery or medication. When someone refers to their disease as Crohn's Colitis they are talking about a form of the disease that is centralized to mainly the rectum and colon or large bowel. This is still Crohn's disease and can still have symptoms at any time along the whole G.I. tract.
There is another disease called Ulcerative Colitis that can be pretty much cure by removing the colon because it is only in the colon or large bowel. It does not go up in the small bowel which means by removing rectum and the colon you are basically removing the disease by going with a permanent stoma. So just to be clear though, you can not cure or put Crohn's or Crohn's colitis into a permanant remission by surgery. Although, you can gain a sometime long remission by having a resection but the disease will return eventually.
FunGuy, I am in complete understanding about how you have not gotten the results that you were hoping for. I am pretty sure that nearly everyone on here has felt this at one time or another but you continue to fight and stay positive. If you are really sick, call your doctor and see if you can't raise the dose or frequency. There is no reason not to be proactive if you are not getting any benefit from the medication. Remicade is too expensive not to be seeing any success from it and you may be at too low of a dose. Just like if your pain medication is not working for your pain, call your doc and have them do what they are supposed to do for you.

Terry73
Regular Member


Date Joined Oct 2009
Total Posts : 57
   Posted 3/18/2010 7:25 PM (GMT -7)   
I am going for my 3rd remi infusion on March 25th so i guess were in the same boat, i just got out of the hospital last week after another week in there for another flare so i am on a tapering dose of pred again. I was told by my GI that it could take up to 6 months before you will know if the remicade is making a difference or not. Everyone is different some feel better quickly and some take longer. he told me for crohn's it is usually longer. (apparently rhuemetoid pts are the quickest to see reactions). I am at the end of my road too we have tried numerous diff things so i am dying for this to work as i am sure you are too. So stay postive (cause worrying isn't good for you lol) and hopefully it works for you. Im due to see the surgeon the end of april im hoping to avoid all surgeries too.

Wishing you luck

Terry
Offically diagnosed with Crohn's Oct 2009, been living with bowel problems since 1990
Current meds: Remicade Feb 2010, Immuran, rel-pax, Topomax, Corticosteriod Suppositories, lantus, humalog, 2000u vit d, calcium, multivit, omega 3, Vit B


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 3/18/2010 9:22 PM (GMT -7)   
Wow Terry we really are in the same boat. I will be thinking about you and hoping for you. I would like to see us both enjoy remission. I re-read the letter from my Dr. and I think I was sensitive and being to hard on him. Still, he did not tell me the things you just did like it could take 6 months. He had me thinking that the trap door was open and I was reaching the end of my rope.
Did you do that google of "stem cells crohn's"? I read that and hope it isn't a hoax. sounds too good too be true but dangerous. If it is real, a 90% cure rate........................

Good luck
 

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