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11-25-2008, 09:45 PM   #61
TammySue62
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They still give me 2 tabs(25mg) of benadryl and 2 tabs of Tylenol
and it takes them more then a half an hour to mix the remicade.
I am there about 2 hours total.
No i dont have a machine and yes I have saline before and after as well.
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11-26-2008, 12:56 AM   #62
soupdragon69
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Ok so remicade is usually 5 MilliGrams per Kilo body weight as per the manufacturers and powers that be guidelines for Crohns disease.

For something like Rheumatoid Arthritis it is 3MG per Kilo body weight..

The dose CAN be adjusted according to severity of disease up to 10MG per Kilo if needed.

The normal fluid volume that the drug is put into is a total of 250MLS and it is infused at 125mls an hour - hence a 2 hour infusion time no matter how long they phaff before and after. It is then down to "unit" preference as to whether they use a saline flush bag after the infusion and through the same IV line to ensure you get as much of the drug as possible (which is what mine do) or disconnect the line and give you a bolus flush through your cannula before removing it. Some places will give extra fluids beforehand but there is no real research to back up the benefits unless they feel you are dehydrated beforehand due to diahorrea etc. It is possible to put higher strength of infusion in larger volumes too and so they will infuse over a longer time span so worth keeping in mind.

Each vial comes in 50mg. It is made up with 10mls of sterile water for injections. Which then gives you ummmm 5MG/ML yes?

This is how they are able to titrate your drug dose specifically for you in 5mg incriments. If needed they can use a one ml syringe to take the dose lower again (like for 3mg/ml infusion above). They can also increase the frequency down to as little as 4wkly but most wont go below 5-6wkly due to increased reaction risk and if you are having ongoing problems its probably time to rethink the plan!

Does that make sense?? Sorry my nurse iv stuff is coming out but thought it might be easier if I explained and save all the confusion lol

Using an infusion pump is safer because you are given the drug at a steady rate and it decreases the risk of reaction rather than an ebb and flow rate. It also means you receive the drug over the recommended time span that is deemed safe too. The old fashioned way used to be counting the number of drips in the chamber over a minute and working out how many there needed to be a minute to infuse over a set time. The machines are more accurate although can be tempremental. Some places will also start you at a slower rate and increase it up over a few infusions til you are at the right speed so as to introduce the drug in a gentler fashion to you. Again there is no research to prove this but it is preference of "unit".

MBH I agree with you about the red cheeks. They should have done more to reassure you! Keep an eye on that and if you are unhappy about it talk to your team. It could just be your body responding to the meds and it impacting on your immune system quite fast and so everything goes up a gear if that makes sense?

I do get a cold and tired spell during mine and always ask for a blanket to sleep it off.

Hope you are all doing ok..
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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.

Last edited by soupdragon69; 11-26-2008 at 01:55 AM.
11-26-2008, 08:09 AM   #63
kromom1
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Jan - Looks like it would be very helpful to be good at math if you are a nurse giving Remicade treatments!!! Very confusing, but thanks for the explanation! Hope you are feeling better, by the way.

MBH - I didn't get red cheeks with the Remicade, but my prednisone seems to cause that occasionally (especially on higher doses).

E Cameron - I agree about the cost. I just started, but it looks like my treatments will cost me about $100 each, so hopefully I won't have to have them more than every 8 weeks!

Lisa
12-02-2008, 06:52 AM   #64
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Hi all - kronmom and MBH - how are you guys doing this week? Still feeling the positive results after your treatment? Good luck with your infusion this week kronmom!

My boyfriend's first infusion went off really well despite his high anxiety level. And, more exciting, he felt really great from Th the 20th (infusion day), other than being really tired, all the way through Saturday the 29th. He slept like crazy - 10-12 hours each night for the first time in over a year! He was able to eat more normally (he currently weighs 113lbs - down from his normal weight of 145-150lbs, so the eating bit is really important!) We even went hiking in the snow for 1.5 hours Saturday and he felt really awesome. Sunday some symptoms started to return, and as of last night, it seems that he's back to the terrible condition he was in pre-infusion. I assume that he'll need a few more doses before he sees any long-lasting effects of the Remicade, but I think that the positive reaction immediately post-infusion is encouraging.

He got up this morning early to go to the hospital for his pre-infusion bloodwork (next infusiuon is Th), and he didn't sleep last night so is feeling really incredibly discouraged. He's been fighting this for 8 years now with little relief til now; it's really hard to see him so down. I'll be positive for both of us, however, I really think that he's going to have good results after another few rounds of the Remicade.

Anyhow, I'm really happy to have found this forum. So many people are really unaware of the disease and its effects and it's so helpful to read about all of your experiences. Wishing the very best for all of you.

Last edited by guest15; 12-02-2008 at 10:49 AM.
12-02-2008, 08:32 AM   #65
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Yeah MBH, keep an eye on the flushing, it can be a sign of a reaction... but only if you are running a fever and are feeling hot all over. Sometimes my chest will flush a bit.

My nurses have told me the most common reaction are flushing, fever, itchiness (full body).

Now if you are like me, knowing this information will only make you sit there and start thinking you are itchy. It can have a placebo effect... so while its a good thing to know, don't think about side effects too much. I also don't like to know when my machine is increasing in rate because I will make up worries in my head and again start to make up side effects.

I usually am very cold during my infusions... especially my IV arm and hand. I wore a glove last time Nerd... but hey it helped!

My unit seems to be the only one that drips saline in beforehand and afterwards both for 30 minutes each... I'm okay with that... except it makes me have to pee a lot.

My next infusion is the 27th... Merry Christmas to me too!
12-02-2008, 10:20 AM   #66
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LolaB - I'm glad your boyfriend's infusion went well and that he at least got 9 good days!! I'm doing fine, but just went off the prednisone yesterday, so we'll see how that goes. Usually I flare back up within a few days of going off. Hopefully the Remicade is working enough that I won't flare, and with getting another infusion Thursday, hopefully that will help. Hope your boyfriend's next infusion goes well, and he gets even longer relief this time! Stay positive!

Lisa
12-02-2008, 06:22 PM   #67
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my infusion was yesterday. i asked the nurse for a j-tip because they usually dig around to get the iv threaded, but she said "you don't need that" and shoved the needle in. I have a new favorite nurse!

And my doc said i can spread my infusions out to TEN weeks!
12-02-2008, 07:05 PM   #68
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I've not heard of going for longer than 8 weeks. Good for you RHOV!
Katie - I wanted to put on my gloves last time, but I had the nerd factor in mind, and didn't go for it.
LolaB - stay positive, it sounds like a good start!

Well girls,
(Aren't there any guys in our club?)
I had the best day ever today! I "went" in the morning as usual, but didn't go at work all day. It's 12 hours now since I woke up, and I have felt great all day. Also, yesterday I thought I had to go in the middle of a class, and I thought I would try to hold it until they left in 5 minutes. Well, not only did I hold it - the feeling went away! Just like in real people!! One more thing, I stopped pred on Thanksgiving, and I thought I would be exhausted by now, but my energy level has been fine, even though I had a bad cold this week. I don't want to jinx myself, but it sure was a great day. Maybe tomorrow will be just as good, and the next day, and the next day, and the next day...
12-02-2008, 07:10 PM   #69
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MBH thats great news! Am sooooo pleased for you! YAY!!!!!!!!!

Long may it continue! ((hugs))

RHOV that was the way my consultant was hoping to go with me but we went to 6wks instead so well done you!! Soooo good to hear such good news about both of you!

Katiesue, I just ask for a blanket and snuggle down. I just think why should I sit cold because I am worried they think I am playing it up or exaggerating how I feel, when I am not? LOL It helps me get some sleep too.

Great news girls. Has really cheered me up and made my week hearing you are all doing so well. ((hugs))
12-02-2008, 08:00 PM   #70
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RHOV - That is great about going to 10 weeks!! What is a J-tip?

Awesome news for you, too, MBH! Hope it continues.

I guess I'm the only one that gets hot during the infusion. Not only do I not need a blanket, I have to ask the nurse to turn the heat off!!
12-03-2008, 02:37 PM   #71
My Butt Hurts
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I think I mentioned before a good way to pass the time during infusions -
just listen to songs that you remind you of cute boys from support forums...
Here's my view from my last infusion -


What? Can't see the words??
Sophie B. Hawkins - "Damn, I wish I Was Your Lover"
12-08-2008, 03:01 AM   #72
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kronmom - how did your infusion go last Thursday? How are you feeling?

My boyfriend has his second infusion last Th; a few weird blips like his blood pressure bottoming out and they had to stop the infusion for an hour and a half and run a bag of glucose. He ended up being there for 7+ hours but in the end got the whole dose. He's having less pain but feels terrible, like he's getting the flu and really tired. Also slept really well Th, Fri and Sat but had a bad night last night. Oy. This crohn's stuff is so freakin' unpredictable!

He's having a hard time eating, less having pain afterwards but feeling really heavy and having indigestion sorts of feelings. The dietician gave him a script for Ensure Plus, so hoping that'll help. Has anyone else noted anything like this after starting their infusions?

Hope everyone else is doing well. BF's next infusion is set for Jan 6 - was supposed to be the 1st, but they pushed him ahead til the next week due to the holiday. Oh, and RHOV - congrats on going to a every ten weeks schedule! That's a bit less hassle, anyway.
12-08-2008, 11:42 AM   #73
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Good to hear from you Lola! Sounds like your boyfriend is getting a little relief, wish it was a lot more. That's kind of scary about what happened at his last infusion. Hope the next one goes better. Mine went a lot more smoothly than his. I was out in 2-1/2 hours. The only bad thing was that I was put in a room with another lady getting Remicade, and she slept about half the time and SNORED LOUDLY!! Luckily I had brought my MP3 player, but even with the sound up pretty loud, I could still hear her! I've been feeling well since getting off prednisone a week ago, so I do think the Remicade is working for me. I thought I was in trouble Saturday when I had an episode of diarrhea, but haven't had any since. I'm still having joint pain, but I think maybe it's not as bad. And my abdominal pain is only with bowel movements. All in all, I am very pleased so far with the Remicade. I go for my third infusion on January 2nd, and my doctor said I could discontinue my Imuran after my fourth infusion - yay!!! no more pills (well for the Crohn's anyway)!!

I sure hope the Remicade starts working full-force for your boyfriend very soon, Lola!

Lisa
12-08-2008, 06:03 PM   #74
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Kromom, I didn't realize how similar we are on this thread. I stopped pred a week ago too, am going for my 3rd infusion next, and am on Imuran as well. I'm feeling a bit better each day it seems. Yay us!!
12-08-2008, 06:08 PM   #75
kromom1
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MBH - One of us is just a copycat!!! Has your doctor said anything about discontinuing your Imuran if the Remicade is working for you?

Lisa
12-08-2008, 06:22 PM   #76
katiesue1506
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When I had my first round of Remicade (a year and a half ago) I was on Imuran too, and I just stopped taking it after my first infusion. My doc was gonna pull me off of it after the Remi sank in anyhow.
12-08-2008, 09:49 PM   #77
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kromom1 said:
MBH - One of us is just a copycat!!! Has your doctor said anything about discontinuing your Imuran if the Remicade is working for you?

Lisa
Well, brat - my 3rd infusion is Dec 21st, so you are copying me. I stopped pred on Thanksgiving. You?? (kidding)
Re - the Imuran - no, but I might ask.
I read somethingn in the Remicade handout that said it's not good to take Imuran with it. Something about a riskier type of cancer? Yeah - I gotta read it again.
12-09-2008, 04:29 AM   #78
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I am really happy to hear that you guys are feeling better and better, especially after stopping the prednisone, kronmom and MBH! I'll be thinking of you guys and hoping for continued relief with your 3rd infusions! [i feel like i need to get a couple of pompoms and start jumping around shouting "gimmeee an R! Woo! gimmeee an E!!!! Yay!!...]

Regarding Imuran and Remicade given together, I've read on the Remicade drug sheet "that Patients with Crohn's disease who received immunosuppressants tended to experience fewer infusion reactions compared to patients on no immunosuppressants". I've also read that taking immunosuppressants makes you less likely to develop antibodies to the Remicade. So I guess that's the reason to continue it with the first infusions. I'm looking for info on the risks of taking both together long term but have only found passing mention and nothing specific yet. My BF is taking 3 grams of Pentasa granules every morning; his gastro said that it's been found to have a cancer protection effect and that you need to take at least 2.5 grams a day to have this effect. BF's crohns is only in the colon and the inflammation is 'severe' according to the gastro, so he's at increased colon cancer risk.
12-09-2008, 07:12 AM   #79
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LolaB said:
i feel like i need to get a couple of pompoms and start jumping around shouting "gimmeee an R! Woo! gimmeee an E!!!! Yay!!...

My BF is taking 3 grams of Pentasa granules every morning; his gastro said that it's been found to have a cancer protection effect and that you need to take at least 2.5 grams a day to have this effect.
Ooo YAY! A cheerleader!!

I had not heard that about the pentasa. I'm taking 4000mg a day of that too, so I guess that's good.

Last edited by My Butt Hurts; 12-09-2008 at 09:13 AM.
12-09-2008, 08:17 AM   #80
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Lola - I hope your boyfriend knows how lucky he is to have you - the way you are looking out for him and researching Crohn's the way you are!! You are amazing!!

MBH - You're right, I guess I am copying you! I went off the pred December 2, so I guess you are about a week and a half ahead of me. As far as the reason for not taking Remicade and Imuran together, this is what I found "Concomitant treatment with azathioprine or 6-mercaptopurine in adolescent and young adult Crohn's disease patients has resulted in fatal hepatosplenic T-cell lymphomas." It doesn't give any numbers such as how many have died or what age is considered "young adult." I'm 41 and still consider myself to be a young adult!! (though this disease sometimes makes me feel like an older adult!). I would really rather not take the chance, though, IF the remi will work by itself. That's a big IF, I know, but hopefully it will. I will hopefully be going off the Imuran at the end of February.

Gimme an "R," gimme an "E..." Where do I get some of those pompoms?!!!

Lisa
12-09-2008, 09:16 AM   #81
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kromom1 said:
It doesn't give any numbers such as how many have died or what age is considered "young adult." I'm 41 and still consider myself to be a young adult!!
Oh goody. I'm 39. We're both old, there's no WAY we are "young adults".
I am immature, for sure - but not a young adult, I guess.
HA!
12-09-2008, 02:39 PM   #82
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I have been putting off joining the Remi Club. My doctors have wanted me on it for about 8 months now but I have resisted. But, after this last flare it is time. I will be paying my membership dues starting this Thursday.
12-09-2008, 03:11 PM   #83
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GI JOE! YAY! Welcome to our club! About TIME we had a man in it!
Good luck on Thursday, and let us know how it went.
12-09-2008, 10:39 PM   #84
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Yeah good luck!!!
12-10-2008, 03:46 AM   #85
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Hi Joe! Good luck on Thursday. Hoping for awesome Remicade results for you!
12-10-2008, 08:09 AM   #86
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GI Joe - Good luck, we will be thinking of you!

Lisa
12-10-2008, 04:07 PM   #87
TammySue62
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My Butt Hurts said:
I think I mentioned before a good way to pass the time during infusions -
just listen to songs that you remind you of cute boys from support forums...
Here's my view from my last infusion -


What? Can't see the words??
Sophie B. Hawkins - "Damn, I wish I Was Your Lover"

Hey I have the same cell phone...
12-11-2008, 02:01 PM   #88
Han Shan
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GI JOE! YAY! Welcome to our club! About TIME we had a man in it!
I just want to say for the record that I'm a man too and part of this club. A man made of twisted steel and rompin', stompin' dynamite.
12-11-2008, 02:02 PM   #89
GI Joe
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Hello everyone. I had my first Remi treatment today. Everything went good, no adverse effects. My nurse was really good. She was very reassuring and explained everything in detail. My doctor even stopped in to check on me. The entire staff was very attentive since it was my first time. I have my next dose on December 24th. I don't notice in difference yet, but I know it could take some time to start seeing results.
12-11-2008, 03:30 PM   #90
kromom1
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GI Joe - I'm so glad it went well for you! Hope you get some good result very soon!

Lisa
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