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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade Club Support Group


 
11-18-2008, 02:37 PM   #31
kromom1
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LolaB - I'm going for my first infusion on the 20th as well, so I can't help you out with any advice, but I think it's wonderful the way you are trying to help and support your boyfriend. I sure hope all goes well for him and he gets some relief soon. Good luck to both of you and hang in there!

Lisa
11-18-2008, 10:57 PM   #32
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Yes, same, he NEEDS to get some rest, 1.5 hours a night consistently is one of the worst things I can think of to make Crohns worse, if the pain is overwhelming, he should get some sleep/pain meds to help him cope.

The Remicade will go fine, tell him they've seen it all, so even if the unlikely scenario of him having a reaction occurs, they're standing by for it with an apt solution in mind.
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11-19-2008, 03:23 AM   #33
My Tummy Hurts
 
I get my first infusion this saturday!! Yay!! I am so glad to hear all the positive feedback about it!
11-19-2008, 04:42 AM   #34
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Will be thinking of you on Saturday then MTH. Hang in there things will get better! ((hugs))
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
11-19-2008, 06:17 AM   #35
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Thanks all for your words of encouragement! I'll be thinking of you tomorrow kronmom, and best wishes to you all! It really is a horrible disease and so misunderstood; hoping for the best outcomes for all of you. I'll check in tomorrow to update on how the first infusion went.
11-19-2008, 06:34 AM   #36
My Butt Hurts
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Hey LolaB - welcome! Good luck tomorrow with your boyfriend's infusion. I'm sure he'll do fine.
MTH - good luck with your first one too!
Remission for all!!!
11-19-2008, 10:45 AM   #37
kromom1
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Amen to that!!! My fingers are crossed for all of us!!!

Lisa
11-20-2008, 04:19 PM   #38
kromom1
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Hey - I'm officially a member of the club now. Just had my first infusion. Nothing to it. I don't know why I was nervous, afraid of having an allergic reaction I guess. They gave me 25 mg of Benadryl, and a couple of Tylenols. The infusion itself took almost 3 hours. I got a little tired, but not bad. I was able to drive myself home just fine, and am now working. I go back December 4th for the second loading dose. Hopefully I will start to see results soon!! LolaB - how did your boyfriend's first infusion go?

Lisa
11-20-2008, 07:29 PM   #39
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I had my infusion yesterday and it went off without a hitch, as always. The last several times that I've had my infusion, I've taken non-drowsy Claritin beforehand rather than Benadryl. I hate the drowsiness of Benadryl and did some research into alternatives. I learned that taking Claritin was an acceptable substitute.
11-21-2008, 08:13 AM   #40
kromom1
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It's a little early still (just had my first infusion yesterday), but my stools were already more solid this morning. Hopefully it's not coincidence and it is the Remicade already working!! I'll have to see if they will let me take Claritin instead of Benadryl (I take it every morning already).

Lisa
11-21-2008, 08:35 AM   #41
katiesue1506
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It can work that fast.
11-21-2008, 11:24 AM   #42
CDStinks
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COngratulations everyone !!
i dont take anything before. I think the benadryl etc is more cautionary then anything, not a necessity. As far as i have seen no one in the IBD infusion center that i go to (Mt. SInai in NY) has ever taken anything.
So if it has a negative/drowsy effect on you, I would consider not taking anything. Obvioulsy run it by your doctor first - just a thought.
11-21-2008, 11:56 AM   #43
MINI Cooper
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HELP!
I have a choice to take Remicade, but know nothing
about it. Has it worked for a lot of people here? Were you
able to get into remission? Prednisone just isn't working
well for me. What are the main side effects?
11-21-2008, 02:56 PM   #44
kromom1
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Hey Mini - I just started Remicade yesterday after failing Pentasa, Imuran, Humira, and prednisone. Actually I didn't fail prednisone, I've been dependent on it for a majority of the last 15 months since being diagnosed with CD. Every time I taper off, I flare up again. (and it's caused me to develop diabetes, so I really need to get off of it) So we decided to try Remicade. I don't want to jinx myself, but as I noted above, my stools are already more formed today, so unless it's just coincidence, it seems to be helping already. And I've noticed no side effects from it so far.

I'm sure others on here can give you more advice, though, since I'm just a beginner! Good luck with your decision. I'm sorry I didn't start Remicade sooner!

Lisa
11-22-2008, 09:23 AM   #45
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Tried both remicade and humira. Am one of the lucky people who seems to be allergic to mice and cloned human cells! So I stay far away from the stuff now.
11-23-2008, 03:40 AM   #46
My Tummy Hurts
 
So I officially am done with my first infusion, it went super smoothly, I slept through the whole thing! Not bad at all. Everyone is asking how I feel, I have not noticed any immediate effects, but looking foreward to my next one in 2 weeks! This is actually exciting. I hope it gets me in remission! How nice that would be after such a long time.
11-23-2008, 08:56 AM   #47
kromom1
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Glad it went well for you, MTH. I felt the same way when I got my first one on Thursday - excited and looking forward to the next one! I'm wondering why I didn't try Remicade sooner. I am amazed that you are able to sleep through it - my machine would beep every 15 minutes, and then it would continue to beep until a nurse came and increased the drip rate (beeping for more than 5 minutes sometimes) - very annoying!! I did get a lot of reading done and watched some TV. I did doze a little bit during the last 45 minutes when there was no beeping!!

I sure hope it works for both of us!

Lisa
11-24-2008, 05:56 PM   #48
My Butt Hurts
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Second infusion was today! YAY!!
The nurse was saying that the RA patients often see results during the infusion, but the Crohn's patients typically take until the 3rd or 4th infusion to see a difference.

Question - how many mgs are you all on? Mine was 400. She said it varies from 200 up to 1,000 depending on weight and need.

Next infusion is Dec 22nd - Merry Christmas!

And Lola - how did your boyfriend's infusion go on the 20th?
11-24-2008, 06:34 PM   #49
katiesue1506
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Not sure of my dosage, I know that they infuse 250 ml though.
11-24-2008, 07:30 PM   #50
kromom1
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The nurse told me it was 5 mg/kg, so with my weight at about 66 kg, that would make my dosage about 330 mg.

Maybe it's just coincidence, but I feel like I'm seeing a difference already, and my first infusion was Thursday. I reduce my pred to 5 mg tomorrow, though, so we'll see what happens then!
11-24-2008, 09:11 PM   #51
RHOV
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I get 500 mL, which is over 10mL/kg.

i think the "normal" is 5mL/kg.
11-25-2008, 04:30 AM   #52
My Tummy Hurts
 
hmmm, I think I only got 200 ml, that doesnt make sense. I'll have to ask next time I go in how it works.
11-25-2008, 05:09 AM   #53
My Butt Hurts
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Okay - I'm not "getting" the mg vs. ml.
huh?
11-25-2008, 07:12 AM   #54
kromom1
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I'll have to ask my husband, the RN, how that translates - mg to mL. I don't know.

Lisa
11-25-2008, 09:22 AM   #55
katiesue1506
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Well its mixed with Saline... at least mine is.
11-25-2008, 10:29 AM   #56
kromom1
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I had a separate bag of saline running at the same time as the Remicade.

Lisa
11-25-2008, 11:00 AM   #57
katiesue1506
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Yeah first they ran my with saline in a separate bag, and then they turned off the saline and dripped the Remicade mixed with saline into me, then they did another half hour of saline only. I was surprised they have the nurses manually increase your drip rate, somehow they have an IV machine that knows when and how much to give at my hospital. It'll bump up on its own. The BP cuff was also set to just run every 15 minutes, and give a print out of the readings.

Probably much easier for the nurses that way... except I keep getting stuck with the nurse who doesn't know how to program the machines.
11-25-2008, 12:12 PM   #58
kromom1
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I had one of those nurses too! It took her like 10 minutes to figure out how to increase the drip rate. Yes, I would think they should be able to program the machine to increase on its own. They only checked my BP before the infusion, and then afterwards only because I asked them too as it was a little high beforehand (probably because I was nervous).

Hopefully you will get a better nurse next time, KatieSue!

Lisa
11-25-2008, 09:27 PM   #59
TammySue62
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My Dr. doubled my dose from 300 mg to 600 mg over
10 mg instead of 5 mg
i get my next infusion (every 5 weeks) Dec 3and my body sure lets me know
a good 7 -10 before hand. It takes everything in me just to try and move.
Talk about joint pain. OUCH!!!!!!!

I looked on my drug receipt and it is in MG not ML
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11-25-2008, 09:39 PM   #60
My Butt Hurts
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My IV machine beeps and they change the drip rate then. One nurse came over and asked "They're changing the rate on you?" and I said "Huh?" How the hell was I supposed to know?? SHE'S the nurse?? I didn't realize what they were doing until I read it here! I just figured it beeped like a timed alarm for them to take my blood pressure, which they did the first time.
My saline is a seperate bag, and they don't even use the whole bag. It doesn't go in at the same time as the Remi. But afterwards they do a flush of just saline. It's only a few minutes though, not 1/2 hour like Katie's.

I wrote this on my other Remi thread, but it might be helpful on this one-
I WAS allowed to take a non-drowsy Claritin instead of a Benadryl. They did have to call my doc and ask if that was okay.
*Helpful tip for Remi patients* The nurse said that in the future I could take the Claritin and Tylenol ahead of time because once you take it, you just have to sit around for 1/2 an hour and wait for it to kick in. If you take it before your appt, you can start the infusion sooner.
She also said that they give Benadryl instead of Claritin because Remi is so old, they didn't have Claritin back then. Bad reasoning I think, but whatever.


Also, I noticed in my phone that my cheeks were bright red.
The nurse said that my vitals are fine and I felt fine so it's nothing to worry.
Anyone else have red cheeks?? (On my face, sickos)

Next infusion December 23rd. Merry frikin x-mas...
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