HealingWell
Search Close Search
☰

Just started remicade and having symptoms...

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/21/2012 10:45 PM (GMT 0)
It was two weeks ago Friday I had my first Remicade infusion and I have seen blood twice. Today and a few days ago. I have no other symptoms; my frequency is down (1-2 times), no pain, no D (my stool is somewhat soft but that doesnt bother me even when I get in remission).

My next infusion until early November and I am worried that might be too long. My GI has me at 5mg per kg every 8 weeks. Should I be calling him?

Any other Remicade advice from people out there?
Posted 9/22/2012 12:47 AM (GMT 0)
When I was on Remicade I was told that it could take several infusions before there would be a noticeable difference in symptoms. Some people notice it after just one infusion and others it may take up to the 4th one.
Posted 9/22/2012 1:02 AM (GMT 0)
You mean he didn't start you on a loading dose? That seems a bit unusual. Normally it's 2,4,6 and than every 8 weeks. Perhaps you should ask him?
Posted 9/22/2012 1:34 PM (GMT 0)
I did ask him about that but he said every 8 weeks is a very standard dosage for remicade. I had bad luck on humira so maybe he didn't want to push things and risk a bad reaction?
Posted 9/22/2012 1:38 PM (GMT 0)
You should ask him his reasoning. Because if you start your dosing at every 8 weeks, it's going to take longer (if at all) to start working. What kind of reaction did you have to Humira?
Posted 9/22/2012 1:56 PM (GMT 0)
8 weeks is standard after the loading doses. I am starting remicade on wed and am scheduled for the 2, 4, 6, etc... I agree, ask your doctor for a clearer reasoning. Hope things work out for you!
Posted 9/22/2012 2:15 PM (GMT 0)
No bad reaction to humira. But I just kept flaring through and my body couldn't handle the immunosuppression
Posted 9/22/2012 7:32 PM (GMT 0)
How do you mean that your body can't handle immunosuppression? Do your counts drop?
Posted 9/22/2012 7:40 PM (GMT 0)
after my loading dose I started at the 5mg/kg every 8 weeks, I got bumped up to 10mg/kg every 6 weeks. That's as frequent and high of a dosage allowed. I felt relief quickly but I'm also on 6mp at the same time so maybe that helped.

Post Edited (blksteeda) : 9/22/2012 5:10:01 PM (GMT-6)

Posted 9/22/2012 8:01 PM (GMT 0)

Red_34 said...
How do you mean that your body can't handle immunosuppression? Do your counts drop?

I would flare through the humira often and need to go on pred/entocort or i would get a cold/some sort of illness. In both cases, whenever this would happen it would get dragged out with infection scares and unclear symptoms because of the other drugs I was on. I was rarely healthy and i finally decided humira just wasnt doing the trick anymore.
Posted 9/22/2012 8:25 PM (GMT 0)
Usually when you get sick on immune suppressors it's because your WBC drops, your body is unable to fight off infections. With frequent blood testing your doctor should be able to counteract this by either lowering a dose or discontinuing a med.

I'm on both 6mp and Remicade and I rarely get sick. Perhaps my immune system is now controlled or "normal" because before starting these meds, I was sick constantly.

Does your doctor do frequent blood testing?

But to go immediately to every 8 weeks for the Remicade seems a bit strange. Most GI's like to build up the med in the system so by the time the every 8 weeks start, it's more of a maintenance.

I don't know if Remi actually lowers the immune system tho. I know it's a TNF blocker, which means that it lowers the inflammation body wide.
Posted 9/22/2012 8:53 PM (GMT 0)

Red_34 said...
Usually when you get sick on immune suppressors it's because your WBC drops, your body is unable to fight off infections. With frequent blood testing your doctor should be able to counteract this by either lowering a dose or discontinuing a med.

I'm on both 6mp and Remicade and I rarely get sick. Perhaps my immune system is now controlled or "normal" because before starting these meds, I was sick constantly.

Does your doctor do frequent blood testing?

But to go immediately to every 8 weeks for the Remicade seems a bit strange. Most GI's like to build up the med in the system so by the time the every 8 weeks start, it's more of a maintenance.

I don't know if Remi actually lowers the immune system tho. I know it's a TNF blocker, which means that it lowers the inflammation body wide.

I get my blood and stool tested every time I am feeling symptomatic which has been often in the past 1-2 years. I have also had numerous bouts with CDiff which muddy's the waters a bit. I plan on calling my GI monday to talk about this with him.

I have also read about Remi + 6MP meds? Does anyone know about this? Is it something I should bring up to my GI and consider?
Posted 9/22/2012 11:12 PM (GMT 0)
I'm on Remi and 100mg of 6mp. A lot of people get a bit more nervous because it supposedly increases the cancer risk. Some GI's will stop patients taking 6MP before Remi but my GI has explained that they do work well together.
Posted 9/23/2012 12:29 PM (GMT 0)
My GI mentioned that he wants to stay on my 6mp, tho he did lower the dose to 50mg because he said that it can help prevent building antibodies against the Remicade.
Posted 9/25/2012 1:35 AM (GMT 0)
I also remember there was a different schedule at the start. You need to find out if your doc knows that! Weird.
Posted 9/25/2012 2:21 AM (GMT 0)
I called my GI and left a message today with his secretary. I will call again tomorrow and hopefully get a hold of him. I will let this threat know what he says of the matter.
Posted 10/10/2012 1:50 AM (GMT 0)
So this is long overdue: I talked to my GI a while ago but forgot to mention it here. He said his reasoning for not doing the loading dose is because he did not want to suppress my immune system that much. Which I do not blame him for doing. As I have mentioned here and in past posts, my immune system does not handle the suppression well (currently battling a cold and trying to keep it from getting worse). So for those of you who were wondering, that is the reason....
✚ New Topic ✚ Reply