07-29-2018, 09:37 PM   #1
awoenker12
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Starting Remicade

After what has been several months of trying to find the right medication, my doctor is suggesting that I start Remicade. Back in January, I had a colonoscopy, which showed inflammation throughout my entire colon. My doctor put me on 40mg of prednisone which worked very well to calm down my flare, and 50mg of 6mp. After two weeks, my doctor decided to taper me off the prednisone 5mg each week. One week after I fully tapered, my symptoms returned. So my doctor put me back on 40mg of prednisone. After two weeks, I taped again 5mg each week, and when I got down to 15mg, my symptoms returned again. What really frustrates me is that my symptoms are very mild. When I flare up, I have 2-3 loose bowel movements per day, and occasional mild abdominal cramps. I don't get why the 6mp is not working. I had my blood work done, and the results said my levels of 6mp are adequate.

My biggest worry ever since being diagnosed with Crohn's was starting biologics. I always thought biologics was for severe Crohn's, and my condition is not that severe at all. What I don't like is that once you start biologics, you are pretty much stuck on biologics from what I have heard from other people. Plus, I am in high school, and I don't want to have to miss school because I have to get an infusion.

Sorry that this is long, I just needed to vent a little. Could anybody give me some more information about Remicade, and any advice? Lastly, I run cross country and will the Remicade affect me or prevent me from running vigorously. Thanks!!!
07-29-2018, 11:58 PM   #2
aypues
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Remicade is FAR SUPERIOR to doing any sort of prednisone taper courses. That stuff will kill you. Or at least make you crazy and osteoporitic, among other terrible side effects. Try to get in with a doctor that specializes in IBD - GI generalists sometimes canít deal. Remicade is the most effective of the biologics, but there are many others now if you donít respond to it. Remicade can be given more quickly, 2-3 hours, if you tolerate it well and donít develop antibodies to it. I am on Remicade and Cellcept (to prevent antibodies to Remicade). Tried Humira first and didnít respond, but couldnít get a higher dose approved. Tried Stelara after a year of Remicade and that never worked at all, so went back to Remicade and am on the mend. I go through anemia at times and have needed IV iron too - way better than oral. Good luck!

P.s., no, it wonít affect your running at all.
08-19-2018, 10:50 PM   #3
garryg
 
Join Date: Aug 2018
Location: Georgia
As someone that is about to start a first round of Remicade next week, your post is comforting. I'm really hoping it helps my UC.

08-20-2018, 07:05 AM   #4
Bradsmom
 
Join Date: Aug 2016
Location: Waverly, Iowa
My son started Remicade (with Methotrexate) a little over a year ago after trying 6mp . He is 12 years old. It has been nothing short of a miracle medicine for him. He has no side effects, no sign of Crohn's, and feels better than he ever knew possible. We are thankful beyond words that his doctor decided to switch him to Remicade, despite the fears we had. When he went for his blood draw after the appointment where the doctor told us 6mp wasn't cutting it and we needed to try Remicade, the nurse drawing his blood told us that her son has been on Remicade since he was 16, and was then 27, and that is was a miracle medicine for him too. I don't think it was a coincidence that we had her as our nurse, as that brought us a lot of comfort just when we needed it! As for the infusions, think of it as a time to kick back and relax, take a nap, read a book, watch a movie, call a friend. Hang in there, you've got this! I'm praying that this medicine makes you feel better than you ever thought possible too.
08-23-2018, 08:13 PM   #5
awoenker12
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Wow, I am amazed! I had my first infusion 5 days ago, and all of my symptoms have disappeared! I am so thankful that my doctor put me on this medication! Also, I have noticed that my running is a lot better. I just feel great!
08-23-2018, 08:50 PM   #6
aypues
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Wow, I am amazed! I had my first infusion 5 days ago, and all of my symptoms have disappeared! I am so thankful that my doctor put me on this medication! Also, I have noticed that my running is a lot better. I just feel great!
Great! I remember when I first started Remicade in 2016 - it kicked in immediately like with you. It gets better over time though with your next 2 loading doses and subsequent infusions. So happy for you.
08-23-2018, 09:39 PM   #7
Bradsmom
 
Join Date: Aug 2016
Location: Waverly, Iowa
Wow, I am amazed! I had my first infusion 5 days ago, and all of my symptoms have disappeared! I am so thankful that my doctor put me on this medication! Also, I have noticed that my running is a lot better. I just feel great!
Awesome news! So happy for you!
08-26-2018, 07:26 AM   #8
Kas8173
 
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What I don't like is that once you start biologics, you are pretty much stuck on biologics from what I have heard from other people.
This was also my main worry about starting biologics. I raised this point with my consultant last week and he has put my mind at ease.

He said that the chance of developing antibodies to the biologics is around 10% per year if you are given biologics alone. However, when given in combination with an immunomodulator then that chance is reduced to 3% per year.

Are you on a combination of both? My consultant is looking to start me on combination therapy in the next few weeks. Hopefully it will work as well for me as it did for you.
08-26-2018, 11:37 AM   #9
awoenker12
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KarlB, yes, my doctor does have me on a combination therapy. I am on 50mg of 6mp. He said he would keep me on the 6mp for like six months or so, and then I would stop taking the 6mp, and just be on the remicade.
08-26-2018, 07:58 PM   #10
NuttyGuts
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My thanks to all of you for this information! I am on 100mg of azathioprine (is that the same as 6mp?) a day now in preparation for the first Remicade infusion Sept 25. Also still taking 20mg day of prednisone. I have been nervous about getting off the prednisone and starting these other two meds, but it sounds like it has brought relief to so many. I have always tried to stay away from drugs, and solve health issues with diet and supplements, so I am scared about suddenly having all these meds in my life. It sure beats being in pain every night and day, though!
08-26-2018, 09:25 PM   #11
Jelly loves Peanut butter
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Wow, I am amazed! I had my first infusion 5 days ago, and all of my symptoms have disappeared! I am so thankful that my doctor put me on this medication! Also, I have noticed that my running is a lot better. I just feel great!
Great news that the remicade is working for you after one dose! My son is 11 and has been on remicade and methotrexate for 1 year this September. He responded very well right away too and has been symptom free as well. 💜💙. Initially he had infusions every 4 weeks but changed to every 8 weeks. So that will equal about 6 infusions yearly which makes the whole going for infusion sound not so time consuming. Best wishes to you for continued good health!
__________________

Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
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