• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Worried Wife!

My husband is 3 weeks away from his next rem infusion, which will be his 4th one. He's been in contact with his gi since his current flare started. Each day he's getting progressively worse. The doc's nurse told him this afternoon to go to the ER to be started on IV prednisone. He has been asking for another infusion, but they aren't willing to give him an early dose. Is there some sort of protocol that has to be followed when it comes to remicade???? Wondering why exactly they wouldn't give him another one?? He isn't due for his fourth infusion until June 28th. The remicade seemed to be working for him thus far. When he received the first infusion in the hospital he started to feel better the next day. Before the third infusion he could tell when it was wearing off about a week prior. He got the infusion and felt great again. Hope that's a good sign that the rem is working and maybe just the dosing needs to be adjusted???? Any input would be great, I feel completely helpless/hopeless.
Last night was awful and the worst night todate. Fever, chills, toilet trips every hour almost, lots of blood along with some clots, very tired and now severe abdominal cramping with pain to the touch of the belly. I'm not sure that iv prednisone is the answer. During the time of his first major flare the iv pred didn't get it under control, wasn't until he had the infusion. UGH!!!
 
I had a hospital stay between the 3rd and 4th infusion. If I remember remicade is normally infused six to eight weeks. With that said I had to adjust how much remicade is delivered per infusion. Id see if they could either up the amount of remicade or go to every four weeks.
 
I had a hospital stay between the 3rd and 4th infusion. If I remember remicade is normally infused six to eight weeks. With that said I had to adjust how much remicade is delivered per infusion. Id see if they could either up the amount of remicade or go to every four weeks.
He has asked the doc to speed up the infusion date and they told him to go to the er to get admitted for iv prednisone... we were hoping for the infusion!! It makes me sooooo mad that these hospitals/docs make sure they get paid for their services, but you have to stalk them to get any answers!!!!!! Not sure why they can't give him a general idea of what they are thinking, instead of keeping him out of the loop with his care plan/treatment. So frustrating!
 

Jennifer

Adminstrator
Staff member
Location
SLO
The reason why Remicade isn't given more often is because your risk of serious side effects/infections increases.

For Rheumatoid Arthritis they could go as often as every 4 weeks. "For patients who have an incomplete response, consideration may be given to adjusting the dose up to 10 mg/kg or treating as often as every 4 weeks bearing in mind that risk of serious infections is increased at higher doses..." http://www.globalrph.com/infliximab_dilution.htm That's for RA though.

If IV steroids are needed then they're needed. Remicade may not work immediately even though it may feel that way for a while but as you mentioned the symptoms returned before the next infusion. The goal is full mucosal healing and IV steroids may help obtain that goal along with an adjustment to his Remicade.
 
The reason why Remicade isn't given more often is because your risk of serious side effects/infections increases.

For Rheumatoid Arthritis they could go as often as every 4 weeks. "For patients who have an incomplete response, consideration may be given to adjusting the dose up to 10 mg/kg or treating as often as every 4 weeks bearing in mind that risk of serious infections is increased at higher doses..." http://www.globalrph.com/infliximab_dilution.htm That's for RA though.

If IV steroids are needed then they're needed. Remicade may not work immediately even though it may feel that way for a while but as you mentioned the symptoms returned before the next infusion. The goal is full mucosal healing and IV steroids may help obtain that goal along with an adjustment to his Remicade.
Thanks Jennifer! I guess I'm just more upset that I receive more information from this forum than my hubby's own doctor. We are both very type A people and its really hard to adjust to something that we have absolutely no control over. He is very reluctant to go back to the hospital... this is all so new to us both. At this point we will have to accept we are at their mercy.
 
If I remember your husband's symptoms came back after tapering the pred which probably means that the remicade wasn't at the point that it could take over completely.

My son is on Remicade treatments at the highest dose and he goes every six weeks for infusions, at one time he went every 5 weeks. The GI mentioned that there was the possiblity of going every 4 weeks but he felt if you got to that point it was time to consider a switch in medications.

Also, as well as a shortened schedule for infusions and the highest dose of Remicade my son is also on methotrexate to help the remicade along.

It may be that your husband needs to up the dose of pred and slow the taper to give remicade time to get to full theraputic levels. I think it takes at least 6 infusions before they consider upping the dose or shortening the schedule of the infusions. Or at that point they may consider adding another med or switching meds altogether if he is showing very little improvement with Remicade.

I do hope your husband feels better soon.
 
If I remember your husband's symptoms came back after tapering the pred which probably means that the remicade wasn't at the point that it could take over completely.

My son is on Remicade treatments at the highest dose and he goes every six weeks for infusions, at one time he went every 5 weeks. The GI mentioned that there was the possiblity of going every 4 weeks but he felt if you got to that point it was time to consider a switch in medications.

Also, as well as a shortened schedule for infusions and the highest dose of Remicade my son is also on methotrexate to help the remicade along.

It may be that your husband needs to up the dose of pred and slow the taper to give remicade time to get to full theraputic levels. I think it takes at least 6 infusions before they consider upping the dose or shortening the schedule of the infusions. Or at that point they may consider adding another med or switching meds altogether if he is showing very little improvement with Remicade.

I do hope your husband feels better soon.
Thanks Clash! He is on his was to the er to be admitted. Yes, his symptoms started to come back 2 weeks after last taper dose of pred., or it could be from the first prime rib he had eaten at that same time that sent him right to the toilet. Not sure one way or another. Also, his temp spiked back up last night. Don't believe be can have a rem infusion with a fever too.
Here's to hoping the Iv pred works!!! Thanks again.
 
Thanks Jennifer! I guess I'm just more upset that I receive more information from this forum than my hubby's own doctor. <clipped>
That's the good and bad of a forum. You probably are receiving MORE information here on the forum. The problem is it's ALL anecdotal unless someone is putting PDF scans of their actual doctor notes up for everyone to read. Engage the doctor - they're the professionals. If they truly won't spend the time to discuss everything with you then shop around.

A lot of situations like this are just a difference in viewpoint. Your husband has Crohn's, something scary happened, you're worried, you want answers.. all completely reasonable. Now take the Dr. point of view - they've seen this 100 times, have the standard plan of attack, and aren't worried about it. Also reasonable given their experience.

Just a thought to chew on.
 
The protocol is not to do remicades within 4 weeks of the last infusion. It has to do with the rate at which it breaks down in your system.
 
Also, when he does get the next infusion, ask the doctor about prepping with benadryl or zyrtec along with tylenol if they haven't been doing that. It can help reduce the chance of remicade losing its effectiveness over time
 
Top