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Crohn's Disease Forum

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RHOV

RHOV

Joined
Oct 21, 2007
Messages
739
It seems like a bunch of people are just starting Remicade and looking for advice. I'm starting to lose track of everyone in the IV league! I thought it would be helpful for everyone on Remicade to make themselves known and share their experiences in one nice consolidated thread.

I've been on Remicade since January, every 6-7 weeks at a little over 10 mL per kilo. My infusions take for friggin' ever, but it kicks in within 1-3 days. And i like missing school.

I <3 Remicade.
 
Oooo, I am looking forward to seeing people in this thread, I have not started yet but getting ready to. I'm nervous!!
 
MEE! I was on it in May of 07 and had 2 infusions and then moved to Humira... I just started it again 2 weeks ago... I go for my next loading dose on Saturday.
 
Me too!

Have been on Remicade since May 07. Initially 8wkly but settled at 6wkly since Dec 07 at 5mg/kg but because I have put weight on with steroids for other health issues I have not been getting the full benefit. GI is adjusting it now!!

OOh a club - when I was in primary school I belonged to the "Tufty Club". It was a Squirrel called Tufty who taught us how to cross the road! LOL

Feel like a kid again! Bring it on!!!
 
RHOV you are so creative - I love the "IV league" reference!!! Great idea for a thread - I will be joining soon, too - maybe next week. To My Tummy Hurts, I am a little nervous too, but from what I've read so far on other Remicade-related threads, it looks like it will be a piece of cake!! I'm sure we will be fine and hopefully will get good results!

Lisa
 
Hey guys... I wanted to make you aware of a resource... my doctor enrolled me in this rebate program by Centacor and here's the website for it http://www.centocoraccessone.com/

If you qualify for the program they will provide up to $400 dollars in a rebate for the out of pocket costs you pay for Remicade. They also offer patient assistance like sending you appointment reminder cards, and my lady is going to call me after my infusions to see how they go.

Kinda cool.
 
Started my treatments In June 08 - had my last loading dose about 5 weeks ago
Next one is in 3 weeks (8 week intervals)
This stuff it amazing - It started working within hours of my first dose & i now feel like there is nothing wrong with me (remission???)
i secretly like the 3 hour treatments - i get to sleep in & miss a 1/2 a day of work & no one bothers me....not too bad.:)
Im sure it helps that the transfusion center is a short walk from my apartment!

Just wanted to share my love for Remicade!!
And of course Join the Club!
 
Well I'll be an official member next week. My insurance company approved me for Remicade, and my first infusion is November 20th. Katiesue, thanks for that information. I'm going to check it out.

Lisa
 
when are everyone else's next infusions?

so far the schedule is:
Nov 15: katiesue
Nov 20: kromom
Dec 1: RHOV

it would be cool if some of us were getting our infusions at the same time!
 
I'm on it but I don't think it's working for me as after the past three treatments I'm in the same boat as I was previously. It seems the only thing that helps me is dilation of my rectum so we'll see.
 
I've been on it since April. I go in for my next treatment on Nov. 19. So far it's been working great for me. It did take about 3-4 infusions before I started to feel as consistently good as I do now. There was a point where I believed it wasn't working, but once I made it over that hump I found myself in remission.

According to a recently published article (my apologies if this has been covered before in this forum):

"Conventional wisdom about the treatment of Crohn's disease is being turned on its head by a new study.

Traditionally, patients diagnosed with the devastating inflammatory bowel disease are treated with a "step-up" approach, a series of drugs given sequentially as their health deteriorates.

First, they get corticosteroids to control symptoms like abdominal pain and bloody diarrhea. They are then prescribed a powerful immune-suppressing drug, which prepares them for a third medication, an antibody that curbs the inflammation at the root of the disease.

But a group of European and Canadian researchers decided to see what would happen if they treated newly diagnosed Crohn's patients immediately with a combination of an immune-suppressing drug, azathioprine, and an antibody, infliximab, simultaneously. Patients were only treated with steroids if they had symptoms.

In the study, published in today's edition of The Lancet, this "step-down" approach proved to be markedly more effective.

At six months, 60 per cent of patients treated with this method were in remission, compared with 36 per cent in the step-up group.

After a year, 62 per cent of the step-down patients were in remission from Crohn's, compared with 42 per cent of the other group. But the numbers in the latter group rose only because so many had progressed to taking infliximab.

"The conventional approach was far inferior," said Brian Feagan, director of clinical trials at the Robarts Research Institute of the University of Western Ontario in London, Ont., and co-author of the study."

Source: The Globe and Mail (Canada), February 22, 2008 Friday
 
Had 2 infusions, started feeling better almost straight after the first one. I to secretly enjoy going (they give me a nice dinner to eat whilst the IV is happening!). Next infusion is on Dec 2nd.
 
Nov 15: katiesue
Nov 19: Han Shan
Nov 20: kromom
Nov 24: MBH
Dec 1: RHOV
Dec 2: Lom
Dec 4: CDStinks

there's a different person every day!
 
Guess I got kicked out of the club, Remicade didn't do much at all, or it was negligible. You guys should all have a global meetup, get you all on the same schedule if possible (I know some are 4, 6, and 8 weeks though), so the forum can be on the same schedule, like women in a household or office menstruating together.

Lol Jan, a squirrel taught you to cross the road, I don't know about UK squirrels, but I'd never take lessons on road safety from the ones out here.
 
Awww - poor Benson wants to be part of the club.
Once a member - always a member, I think.
You've paid your club dues.

Good visual on the squirrel.
 
Well I had my Remi done today. Everything went fine. Vitals stayed normal. I got the freaked out nurse again and she managed to screw my IV up a little and get blood everywhere. Also kept trying to suck bubbles outta my line with a syringe instead of running off the saline into a trash can till they were outta the lines. Sucked blood into my lines again.

I moved my appt times for next time since I found out that she only works weekends in the mornings. :)
 
I first started about 7 yrs ago then stopped about a year ago .Then had the humira injections.that drug didnt get along with me So now I am back on the remicade for the second time.
I am at the highest dose you can get.
As most of you now it goes by your weight. I was at 3 vials but my GI has doubled the dose to 6 vials per every 5 weeks.
Its great for the first 2-3 weeks then I gradually go down hill from there.
Just counting the days until my next infusion.
 
To everyone on Remicade, are you on other medications, too? My doc wants me to stay on Imuran with the Remicade. I will still be on pred when I start the Remi, too, but will hopefully be off of it for good a couple of weeks later, if the Remi works.

Lisa
 
i am on 6MP as well as Lilada. I am doing the new step-down approach - so Remicade & 6MP were given to me early on in the game. I think the plan is to stay on remicade for about 6 months when the 6MP should be working fully & then take me off the Remicade as well as the Lialds & hopefully will be able to sustain with 6MP only
so 3 more months (2 treatments) of remicade to go - cross your fingers for me!
 
Yeah, I have been on pentasa for at least a year or so, and on Imuran for just over a month I think. I'm on 5 mg of pred too, down from 40 in August, but need to stop soon.
 
I'll get you in!!!
You don't actually have to take Remi to be in the club, just think about taking it, have a sponsor, or have a cyber-girlfriend who's in it.
 
kimberlie said:
Tammysue, It is interesting that they put you back on. Mike was told they could not. I am glad to hear they can.
Click to expand...


My GI was not sure If I could at first,but because I have tried every med possible for crohns and him being chief of GI's they accepted me back. i was a first in his books also. That is second time around with his help.
 
My boyfriend will have his first Remicade infusion the 20th. He's super nervous about it and has been on Pentasa for the past 7 years but the inflammation has reached severe levels and his gastro insists he start this new class of drug. I believe that his gastro is going to keep him on the Pentasa while recieving the Remicade.

Last year he had an abscess and developed septicemia, which he just barely survived. After a hospital stay where the staff collapsed a lung trying to insert a main line and then developing a huge thrombosis after they put a line into his neck which required an even longer hospital stay, he has been terrified of going back into the hospital and is suffering severe anxiety at the idea of going in for this infusion!

His condition is terrible, he hasn't really ever recovered from the septicemia incident; he's lost 15kg and doesn't sleep at all. Sometimes he goes for weeks on just 1.5 hours a night as he's up with pain most of the night. He's also one of those driven perfectionists that refuses to miss a day of work and gets up at 5:30 to eat, take meds, use toilet, etc so that he can get through his morning pain before leaving for work. He's a musician and music teacher part-time, and an insurance adjuster for a hospital part-time, so sometimes his days run until 9pm with only a 15 or 30 minute break thrown in there. It's ridiculous and he's become aware that he cannot continue to abuse himself like this and must slow down. So that much is good. And accepting the Remicade treatment is also a very big, good sign.

So. I'm going with him to his first treatment. How have most of you felt during and post-infusion. I want to be as supportive as possible - he's said he's only continuing treatment because he sees a future between the two of us. He's just totally exhausted and so sick that he can't see things clearly, I think, and that's why he was ready to give up and stop treating the disease.

Whew, it felt good to get all of that out! It's so hard to see him constantly suffering and in such pain. It's also hard because I can't just leave him alone and sleep while he's suffering at night, so I've been steadily becoming more and more exhausted as well. [not that he wants me to stay up with him, i just find it hard to leave him like that!]

Bearly in mind how anxious he is, I wanted to ask you all if there's anything I can do to reassure him, any anecdotal Remicade evidence that I can pass on that might help to make it easier.
 
Remicade usually goes pretty smoothly, but if you're with him during the infusion, you can help him out by getting him food/water or books and magazines while he is tethered to the IV pump. It can be a little awkward trying to unplug the machine and I sometimes tangle the cords, so it's nice to have someone help with it. Infusions are boring, so a fun conversation or game will help it go faster and take his mind off things (yours too!). It might be a good idea for you to be the "designated driver" if you aren't already, because many people have reported that Remicade makes them tired. The first infusion can be a little nerve-wracking too.

You shouldn't have anything to worry about! I hope that he sees some fast results from Remicade. i'm sure he knows that you're there to support him through everything, and he will appreciate having you along. :)
 
I had my infusion today. My GI has upped the dose and with getting over recent infection I am kinda tired tonight. Have nothing planned tomorrow so will have a good lie in I think.

Benson! Laughing at my squirrel!! ;-) Will have you know Tufty was VERY sensible *huff*

LolaB, You are doing fantastic supporting him. Try to do a little planning as you are. Nothing planned for the rest of the day. Tell him he MUST rest after it. Its a weird feeling watching it going in the first time. Take some music that he likes with headphones and something else to do/read etc to help pass the time. Ask the staff for a blanket and pillow (my favourites as I get pampered and have a snooze).

Tell him I have found it has helped improve my health all round dramatically and without it would be where he is now!!!

Thinking of you..
 
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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
 
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.
 
I get my first infusion this saturday!! Yay!! I am so glad to hear all the positive feedback about it!
 
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.
 
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!!!
 
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
 
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.
 
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
 
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.:)
 
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?
 
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
 
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.
 
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.
 
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
 
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?
 
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!
 
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.
 
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. :)
 
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
 
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
 
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...
 
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.
 
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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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
 
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.
 
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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!
 
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
 
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!
 
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...
 
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))
 
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!!
 
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 -
3066824042_c5eee58b2b.jpg


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

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.
 
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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
 
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!!
Click to expand...

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!
 
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.
 
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.
 
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 -
3066824042_c5eee58b2b.jpg


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


Hey I have the same cell phone...
 
GI JOE! YAY! Welcome to our club! About TIME we had a man in it!
Click to expand...

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.
 
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.
 
Thanks for checking in , GIJoe. Really really hoping for the best results for you.
Also, Dec 24?? Happy Holidays, eh?
 
I seem to be hungry all the time now. I've been off of prednisone for 2 weeks now, so I don't think it's that (and the prednisone wasn't really causing me hunger the last time I was on it anyway). Can this be a side effect of Remicade? Anyone else experience this on Remicade?

Lola - How is your boyfriend doing since his second infusion?

Lisa
 
I've asked this question before, but what the hell, I'll ask it again, Remicide is the same as Infliximab, isn't it?

If so, when I was on Infliximab, I ate for weeks after my infusions. It really was the best drug I've been on. I had so much energy for the 6 weeks in between my 8 week infusion.

Enjoy the food!!!
 
Kromom.... yeah its not really a side effect... I think its just your body trying to catch up to not being able to eat... it goes away after you start gaining weight. Mine went away after a month.
 
Dan - yes Remicade and infliximab are the same drug.

I lost about 15 pounds when I was flaring really badly in the summer of 2007 (when I got my diagnosis). However, I was on prednisone for about 16 months after that (off and on - mostly on, though) and gained all that weight back, plus some, so I really don't need to gain weight from the Remicade, too! Hopefully this constant hunger will stop soon!!
 
I haven't noticed any constant hunger from the Remicade. I was very hungry when I started feeling better on the Humira, but I think it was just so nice to finally feel better, and have an appetite, that I overdid it.
 
Hi, Started infliximab yesterday. Nothing to report back yet. I havent noticed any change.

My next infusion is 2nd of Jan. A little weird that i'm looking forward to it.

James
 
Just give it some time James...

My next infusion is suppose to be Jan 5th but since I
moved they are not sure if they can get me into a clinic up north.

Just great and tell that to my aching joints bones etc...
 
Hey, TammySue, you and my BF will be infusion buddies on the 5th, if they can get you in. I'll keep my fingers crossed for you.

kronmom, when's your 3rd? Still doing okay after stopping the prednisone? Regarding the hunger, BF is still having symptoms, pain and lots and lots of the 'dreaded D', but he's also got an appetite again, so overall promising. I hope. Unfortunately it's the post-eating period when he has the most symptoms. [he's normally 70kg and went was 51.5kg the day of his first infusion so really really hoping he keeps eating!]

I know MBH and GIJoe are up for Happy!Holidays! infusions this week. We need to get a spreadsheet going to keep track of everyone!

And Welcome to the Club, James; hope the big R offers lots and lots of relief.
 
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