My Remicade Experience is Great for UC

I was diagnosed with Ulcerative Colitis January of 2006, and it completely changed my life. Luckily my doctor was able to diagnose me quickly, and get me on a treatment plan. Unfortunately is consisted of 20 oral pills a day and presented little relief of my symptoms…

With the way insurance works these days, doctors can’t just put you on remicade right away, they have to exhaust all cheaper treatments first and yeild little results… but hey, remicade is expensive.
So I lived with UC, in a full force flair for over two years! Finially in June of 2008, I had my first infusion of Remicade.
Honestly, I was not nervous…I was willing to try anything, short of removing my colon! My treatment was administered at the hospital, in my G.I.’s office. They have a room deicated to remicade infusions, and a nurse who works full time administering the infusions…she is my go to for any questions I have currently.
The first time I went, compared to now, the nurse really watched my vital signs…temperature and blood pressure readings…not a big deal. Now she just does those at the beginning and the end of my treatments. My body handles the infusion just fine.
For me the time passes quickly, 3 hours from in the door to out the door. Same thing everytime. Weight (fun), temperature check, blood pressure check, I.V. line in the arm, Infusion.
I bring my laptop and watch a movie, it is actually a super ‘me’ time. It is just a part of my life now, I have to go every 7 to 8 weeks to maintain my remission. It is totally worth the time because it is the only treatment thus far that acctually worked.
So doing the math, I have done 16 infusions! I feel very fortunate to have the opportunity to get this wonderful treatment! I have my life back!!!!

(Thanks Sarah for posting, and good luck and continues success with your Remicade Treatment!, Adam)




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colitis, hospital, infusions, Remicade, remission, treatment, UC, Ulcerative

15 Responses to My Remicade Experience is Great for UC

  1. Tracey July 24, 2010 at 8:35 pm #

    Sarah:
    Thanks for the positive reponse. I will have my third Remicade tx in a couple of weeks. I was lucky that my gastroenterologist believes in top down approach for treatment and my insurance went with it/unfortunately like you say Remicade is expensive/$15,000 an infusion. I am hoping for good results (esp at that cost!)
    I felt great after first infusion, not doing the best after the second. The second infusion may have worked if my primary doc would have recognized I had thrush in my throat and not placed me on amoxicillin. Guess I don’t tolerate amoxicillin like I used to! I ran to my gastro doc and he has me on the right med for thrush now. But what an ordeal and a set back.
    RU on anyother meds/or just Remicade now.

  2. Michelle July 25, 2010 at 3:44 pm #

    My name is Michelle. I have been flaring for almost a month…on so many meds I can’t keep track. Just had my second round of remicade…doesn’t seem to be helping…how long did it take before it took effect? They say it can take up to 3 months, but I’m really hhoping that something happens before that…
    Thank you for posting, its helpful to hear other peoples stories.
    Be well.
    Michelle

    • Milka August 26, 2010 at 5:55 am #

      Just keep taking the Remicade…I took until #4 infusion until I started really seeing a difference then it got better and better with each one. It depends on your body but dont give up hope just yet! Keeping my fingers crossed for you!

  3. Anonymous August 8, 2010 at 11:03 pm #

    For those who have had success with Remicade…is that the only drug you need to take to stay in remission or do you still need other meds? I’ve been on asacol (12/day) for 10 years and recently went off Imuran and methotrexate due to rash. Just wondering if Remicade alone does the trick.

    • Milka August 26, 2010 at 5:53 am #

      Hi there! I am currently taking Remicade and still on Pentasa (8 tabs daily). But it is keeping me in check, so I cannot complain!

  4. Milka August 26, 2010 at 6:00 am #

    I am currently on Remicade and wondering if anyone is having any similar side effects? Get hot red rash that comes and goes for no reason any where on the body, hip pain, tendonous pains- on any part that is overused- I am a Massage Therapist and am sore everyday and I only work 3 days/wk. Also is anyone else just tired all the time-I could nap everyday…is this a side effect or my body fighting colitis even though I am not in a flare. Just thought I would put this out there….if anyone having similar side effects please let me know!

    • Adam
      Adam August 26, 2010 at 7:54 am #

      HI Milka,
      I know what you mean about strange joint/tendonous pains. I had/have that too. I have been wondering for a while if I was the only one, but since chatting and emailing with some others from the site it turns out that there are quite a few of us going throgh the weird pains that pop up in different places, come and go etc…
      I can’t for the life of me nail down just yet what is triggering this stuff to get sore and what causes it to go away. Even stranger is that it appears even when the typical colitis symptoms are asleep. I definitely don’t have any answers, but even more definitely you are not alone with what you are talking about!

      • Kathleen February 28, 2013 at 1:35 pm #

        Hi Adam..I had my second infusion of Remicade one week ago. I seemed to be fine ,then all of a sudden a week later I developed joint pain in my wrist and hand that brought me to my knees. The next day it appeared in my left jaw bone and then in my shoulder. The doctors did not seem to react to my symtoms and my internist sent over prednesone becasue I told him the joint pain was so sever I could not turn the steering wheel of my car. The doctors did not offer a opinion that it might be a reaction from the remicade.My gastro seemed to think yes but sounded matter of fact. I happened to find this site and many seem to have the joint pain. 1. Am I crazy or is it really a reaction from the remicade 2.Should I have goton this reaction sooner or can this happen weeks after the infusion. How have you treated your joint pain. Kathleen

        • Adam
          Adam March 1, 2013 at 3:27 pm #

          Hi Kathleen,

          I don’t know you too well, but I’m going to say for sure you are definitely not crazy.(If you had these crazy joint pains and didn’t think it was a big deal…then I’d for sure think you’re crazy:)
          The unfortunate reality of “relatively” new drugs is that the potential side effects are often not as well known as the potential benefits. This I believe is the case with Remicade as well as many other medications, and its unfortunate, but reality. As time/years roll forward, this type of problem starts to go away, but Remicade is still relatively new compared to medications like Prednisone for example.

          As for your question on should you have gotten this reaction sooner?… That’s a tuffie to say, and I really don’t have an answer for that.

          For me, I’ve noticed that when my symptoms are in remission (with the use of diet and getting removing as much un-wanted/needed stress in my life) or darn near that, the joint pains problems have seemed to get much better or have become non-existent.

          On a related note, I’d highly encourage you to read up on the 99 person Joint Pain Survey we conducted here on the site not too long ago. You’ll instantly realize that joint pains are very common with UC’ers. And not just people who are taking/took remicade. So with that said, its actually difficult to pinpoint if the joint pains is simply a manifestation of your disease, or if its 100% related to the Remicade.

          here’s a link to the survey I mentioned: https://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

          And, I wish you the very best with getting past the joint pains. You will, and it may or may not get worse, but you’re gonna feel better once again.

          -Adam

    • Elizabeth May 23, 2012 at 12:18 pm #

      Hi Milka, just wanted to let you know that you are definitely not alone. I have all of those symptoms as well plus an extreme loss of hair. I am hoping it will eventually stop. Hope it works out for you!

  5. Katherine August 26, 2010 at 6:29 am #

    Remicade (infliximab here in the uk) is amazing. It has given me complete remission after trying nearly every drug with limited success. I am on the 2 monthly maintenance dose now and feel and look almost normal again, first time in 3 years I feel I have my life back. My advice is persevere and let it do it’s job. It’s slow and steady at first, but you will
    Improve. My best wishes to everyone fighting this appalling illness, it’s always a struggle, but drugs like remicade gives us hope.

  6. julie January 11, 2011 at 4:13 pm #

    I’ve been reading all about this drug. I’m really pleased for all of you that your doing well. My father is currently in hospital he’s been suffering for 3 1/2 years and the past 2 years been very bad i’m talking constant flare up every day of his life and he’s now not well. I’ve been trying to convince him to ask his consultant for this drug but he won’t!! thinks the doctors knows best. I’m gonna print your messages hopefully this will help
    Thanks all and GOOD LUCK.

  7. Elizabeth May 23, 2012 at 12:13 pm #

    Hello, my name is Elizabeth. I began my remicade treatment in February of this year(2012). I am having severy side effects including hair loss, break out all over my face, itchy rash and joint pain. It has omly been 3 months but I fee like remicade is not working. Am I just being impatient? Also, if anyone had side effects such as mine did they ever go away?

  8. Dustin February 15, 2013 at 11:22 am #

    I was diagnosed with UC in August 2011 and was placed on mesalamine pills (Lialda). I was in a flare up for basically one and half years with only short periods without bleeding upon taking oral prednisone. I used mesalamine enemas and hydrocortisone enemas. I was hospitalized September 2012 because oral prednisone was not able to control the flare. My first infusion of Remicade was then administered in which I saw a small gradual improvement. I continued to see a small amount of blood streaks in my stool even after the third infusion, but still gradual improvements. Some time after the fourth infusion of Remicade I was symptom free. I have now taken a total of five infusions while continuing with mesalamine pills. I can’t say for certain how much the mesalamine pills have helped but since taking Remicade I am doing great. I also have been using mesalamine suppositories for the last three months, but it’s hard to say if they help since I’m also doing Remicade.

  9. Charlie March 10, 2014 at 1:52 pm #

    Hi all,
    I was diagnosed with UC in 2010. I was on mesalamaine for about a year and it was working great, then I developed a side effect from it and had to stop using it. When I stopped using it my UC got progressively worse. My doctor has had me on many different meds including prednisone but I have not been able to get out of this horrible flare. The flare up got so bad that I had to be hospitalized for 2 weeks, during which time my doctor started me on remicade. I really hope this works. Does anyone else notice that the flare ups are worse during certain times of the day? my flare ups are really bad everyday around midnight and then very early in the morning. I really hope for the best for all of you who are going through this horrible disease and I wish the best of luck to all of you!

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