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I am terrified about starting Remicade because of the side effects, has anyone had good results?

November 23rd, 2008 Posted in ibd-qa
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5 Responses to “I am terrified about starting Remicade because of the side effects, has anyone had good results?”

  1. whitewolf411 Says:

    November 24th, 2008 at 7:53 pm

    I have had Inflamatory Bowel Disease (Unlcerative Colitis) for a bit over a year now. I was diagnosed when I was 15.

    Though I didnt start on remicade, it’s the best thing to do out of all the treatments.

    Let me explain my reasoning –
    I was on steroids and those lasted me about 4 months before I wound up back in the hospital. By that time I had already developed arthritis which is a side effect of both my disease and remicade and was already in pretty bad shape.

    About a month later my doctor put me on remicade. It didn’t take long for the color to come back to my skin and cheeks (mine are naturally rosey – they were white for about a year beforehand). Yes- there are side effects but they don’t last long and they are hardly noticeable. There are side effects to everything – remember this – and the question always comes down to this…

    Would you rather be healthier with minor side effects?
    Or living in the hospital?

    Your choice.

    I hope you make the right one.

    Love and kisses,
    Fluffy.
    =3


  2. LaGabby Says:

    November 25th, 2008 at 1:34 pm

    what is that?


  3. Azula Says:

    November 27th, 2008 at 8:05 pm

    Well, my friend needed to take these medications, and there were alot of side effects… unusual hair growth, reding of the skin… ect and she was fine =] U should talk to your doctor.


  4. dans_1962 Says:

    November 29th, 2008 at 2:07 am

    Life is a risk. If you don’t take those medications you know it can be fatal to your disease. If no medication is taken the worse you will get. It could make you more ill. This is why they prescribed medicine. Why defeat the purpose of living healthy? The side effects are only written to protect those who may have serious health problems that may interfer with the medications. Call the Pharmacist. They will tell you the side effects if it will make you feel better when taking them. I always ask before I leave the Pharmacy. I always take the first dose in the early morning when the doctors office or Pharmacy is open so if i do have any severe side effects I can call them or 911. Some side effects never appear. Some people have different reactions to side effects. I was told by my doctor that the side effects go away once your body gets use to it. Lets just ask which you would prefer the chronic disease or the side effects?


  5. clotter2006 Says:

    November 30th, 2008 at 6:07 am

    hi julia, i am a female crohn’s survivor like yourself. Did your GI tell you that you have Crohn’s colitis? That means the crohn’s is causing inflammation in your large colon. It is impossible to have both unless you were dxed as indetermined..meaning that the MD is unable to dx it as crohns or as UC b/c the pathology is very identical.

    I had Remicade infusions 3 x. The only side effects I have heard of were trouble breathing and rash. The new protocol now is to premedicate with benydryl to prevent problems plus the RNs will monior your BP every 15 minutes. If at any time you feel funny or are hurting, they stop the infusion right then and there.

    The Crohn’s & Colitis Foundation of America has a site where you can look up the latest treatments, diet info, surgery, coping skills, as well as locating a support group near you. They also have a live chat & a hotline that is run by healthcare workers well versed in IBD M-F 9 am – 5pm (EST).

    Julia, I know that starting any new treatment is scary. I have been there and truly understand what you are going through. Has your GI considered Entocort, 6MP, Humira, or Imuran if you are a candidate.

    Feel free to email me w/questions. I’ve had this for 23 yrs. dxed at age 12. I have learned alot from the drug reps at the CCFA educational meetings as well as other speakers such as dieticians, surgeons, and insurance reps.

    I wish you the best of health.


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