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Hi guys. I'm planned to have my first Remicade infusion next week, and i have a question for all of you.

Did you notice after getting Remicade that you get more infections or catch more viruses? Do you avoid crowded places etc..... Thanks
 
Mazen, I,ve had 4 infusions and no viruses. I am really careful and wash my hands alot and try not to touch what other people touch. I finally got my Flu shots 2 weeks ago. I am not as OCD.
 
I havent noticed a diference at all. I never got sick before and I still dont. Been on i for 2 years now. And Im not very careful at all, never wash my hands, hang out with people who are sick, etc.
Im also on methatrexate.

I hope it helps you Mazen.
 
CrohnsHobo said:
I am asking my Dr. to stop my Remicade today. Don't really see the point anymore. Get the 10 every 4 weeks and I am good for about a week and then back to feeling awful.

Need something that is gonna sustain me for a full month or I am going to have to pop percocets more than I already am.
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I'm so sorry CH - I know you must be so frustrated. I really hope they can find something that works for you!!

JJ - hoping you have a better response this time with no pain (and good sleep!)!

Mazen - praying this will work wonders for you buddy!!! In looking back over the last 5 years - I have only had one really bad respiratory infection that just hung on for like 6 weeks while on Remi. Other than that, I have been pretty darn healthy. I am a bit OCD about washing hands and staying away from people who are ill - I guess it is silly self preservation mode - I just always remember how sick I was with that one infection.

Well, between the increased Remi dose two weeks ago and the pred taper I seem to be doing *ok*. Had a rough 24 hours last Friday/Saturday - but all in all the rest of my vacation went without a hitch. Sometimes it's the anxiety that can get you......

As a side note - about the same time I started the pred taper I started noticing this blasted rash that I have on my chest and back getting better. It is about 95% gone (best yet) after 1.5 weeks on the pred and without me using the clindamycin solution. The itching has been greatly reduced as well. Unfortunately I'm not sure if it is the pred or the increased Remi dose doing it because they kinda happened at the same time. I guess I'll know more in a week or so as I am coming off the pred.
 
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Mazen said:
Did you notice after getting Remicade that you get more infections or catch more viruses?
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I've been on Remicade for a year now, and was on Imuran for most of that year as well. I haven't had any problems with infections. The average person catches 3 - 4 colds every season (or something like that - I read it last year) so even catching a cold or two doesn't mean it's due to the Remicade.

I don't avoid crowds either. I figure I can catch something just as easily from touching a shopping cart at the grocery store every week as I can from anywhere else.

The best of luck to you with your first infusion, Mazen. I hope it works as well for you as it is for me.
 
Mazen, I have been on Remi since June and have had multiple infections.
I definitely feel like I am a petri dish since on Remi. But I prefer that over
my flare ups. Take the bad with the good we do....
 
Thanks guys. My first infusion is scheduled for tomorrow. My doctor says that we hope the fistula will close after the 3rd infusion and then I can remove the abscess drain from my abdomin. so wish me luck :)

Happy New Year everyone. hope 2010 brings health and a cure (let's cross our fingers) for all of us....
 
To anyone on Remicade, have you had a flare up while on the drug? If so, what was it like, what was the outcome?

I think I might be starting to flare a bit.
 
I did, I just noticed that the drug didn't suppress the flare as long as it was supposed to. My 8 week infusions lasted 6 weeks, then they were only lasting 5 weeks and they doubled the dose, it was still only lasting 5-6 weeks so I went in at a double dose every 5 weeks and by that time it was only lasting 4.5 weeks-ish.

My symptoms were weight loss, loss of appetite, diarrhea 5-12 times daily, pain and fatigue. I would also get this little bumps on my skin (a few of them) when my Remi was wearing off.

They ended up finally taking me off the Remi, hitting me with a three month pred taper from 40mg and starting me on imuran and humira at the same time.
 
katiesue1506 said:
I did, I just noticed that the drug didn't suppress the flare as long as it was supposed to. My 8 week infusions lasted 6 weeks, then they were only lasting 5 weeks and they doubled the dose, it was still only lasting 5-6 weeks so I went in at a double dose every 5 weeks and by that time it was only lasting 4.5 weeks-ish.

My symptoms were weight loss, loss of appetite, diarrhea 5-12 times daily, pain and fatigue. I would also get this little bumps on my skin (a few of them) when my Remi was wearing off.

They ended up finally taking me off the Remi, hitting me with a three month pred taper from 40mg and starting me on imuran and humira at the same time.
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I just had my infusion a little 2 weeks ago, and normally I go to the washroom between 1-3 times a day, the last 2 days has been 6 times/day.

Thanks for the info! I don't really know what to do.
 
s.a.m. said:
I just had my infusion a little 2 weeks ago, and normally I go to the washroom between 1-3 times a day, the last 2 days has been 6 times/day.

Thanks for the info! I don't really know what to do.
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I thought that I was starting a flare a few weeks ago when my Remi infusion was scheduled 2 weeks late. I started going way more than usual, but it turned out it was only something that I ate, it lasted for 3 days, and now I am back to feeling great again. I'm hoping that is the case for you too. Good luck, and I hope you feel better quickly.
 
Hey Sam - this just happened to me. I've been struggling for at least 6 months with this weird skin rash thingy that they say is Remi related and I needed to increase my Remi dose at least 6 months ago because they said my blood levels at the 8 week mark were very low for circulating Remi. Well, I didn't increase it - and I started flaring pretty well at the beginning of December. Basically noticed an increase in D and trips to the bathroom as well as inflammation at my resection (descending colon) and ileum - bit more than a dull pain. Also had a lot of fatigue. They increased my Remi dose AND started me on a super short taper of Pred (today was my last day) - and I'm feeling better now - not 100%, but better. We are still trying to figure out if I'm failing Remi or not - they may take me off of it anyway because of the blasted skin rash. I'm bummed.

Hope it is what MBH says and just something you ate.
 
katiesue1506 said:
They ended up finally taking me off the Remi, hitting me with a three month pred taper from 40mg and starting me on imuran and humira at the same time.
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How has this been working for you?

Thanks everyone for the info, I am hoping it passes as well. I am going to call my GI nurse tomorrow and see what they have to say.
 
Hi guys. I had my first infusion last Wednesday and it went fine actually (if you don't count the 4 failed attempts of the nurses to put an IV in me :)

I don't feel much difference, except that I feel a bit more energetic. My doctor told me we cannot know if the fistula will close till the 3rd infusion and then I'll have a CT scan to see what the Remi did.

I also added Ginger to my supplement list (multivit, vit C, fish oil) and it seems to be helping with gas and indigestion issues.
 
Yay Mazen!! Well...you can't officially join the Remi club until you get overly poked trying to get the darn IV in :O) Keeping my fingers crossed for you that the Remi gets rid of that darn fistula!
 
Yeah finding the vein is tough sometimes especially if you are dehydrated, like I am when it comes time for my infusion. At least she got it!
Hope it starts working for you real soon! :)
 
My nurse says to make sure to drink lots of fluids the night before you are going to get stuck to help plump those veins up. I've heard drink the day off as well, so not sure which is true so I just do both LOL!
 
Thanks guys. I'll make sure to drink lots of fluids before my 2nd infusion next week.... Damn, I hate it so much when they insert that IV needle in, and then it doesn't work, and then the nurse smiles and says, sorry but i'll have to poke you again. Let her try all that poking for a change :)
 
Mazen said:
Thanks guys. I'll make sure to drink lots of fluids before my 2nd infusion next week.... Damn, I hate it so much when they insert that IV needle in, and then it doesn't work, and then the nurse smiles and says, sorry but i'll have to poke you again. Let her try all that poking for a change :)
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It seems to get worse with time. After three years + on Remicade by the end they had an awful time getting veins. They always argued over who was going to be the one to stab me all over. Thankfully the pain and needles don't bother me at all.
 
Good gravy - do you guys not have access to an IV team? Maybe it is because I get mine done at a hospital - but if they have to stick me more than twice - they call the IV team - those people have "x-ray vein" vision. They will look at the backside of my forearm and I'm like "hey - there is NOTHING there!!!" and boom - they get it in first shot every time!
 
Peaches said:
Good gravy - do you guys not have access to an IV team? Maybe it is because I get mine done at a hospital - but if they have to stick me more than twice - they call the IV team - those people have "x-ray vein" vision. They will look at the backside of my forearm and I'm like "hey - there is NOTHING there!!!" and boom - they get it in first shot every time!
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I got mine done at a hospital too. One of the best in the country actually. They always just said I had tough veins. They could find them, just couldn't get into them and when they did they shrived up and they would have to find a new one.
 
I get mine done at the hospital also. The nurses always have one of the anesthesiologist who are passing by put the IV in. They are always accurate and fast.
 
The best part is when they move the needle around IN your arm to find the vein! OUCH! I used to go to the infusion center in the hospital and because of insurance paid about $500 a vist (obviously much better than the $6500 bill) when I moved to KS the GI that I started seeing has a remicade clinic in one of his offices, staffed by a remicade nurse who used to be part of an IV team in a hospital. I only get stuck once and the best part is that I only pay the $40 office visit co-pay.

And ditto to Fog Ducker - Drink lots of fluids to hydrate - makes it easier to find the viens
 
The hospital I was getting my infusions at billed $26k for each IV every four weeks!

I only paid out $2k at the beginning of the year to be 100% covered, but man that stuff is expensive.
 
remicade...imuran?

I am currently on imuran, and recently had a colonoscopy. Doc found inflammation and bleeding which in reslult, I will now be put on Remicade (once I agree to it after googling every bad side effect lol) Just wondering, if the imuran doesn't seem to be working for me, do you think the doc would keep me on it as well as remicade. I really don't want it, I hate imuran. And of course, after reading all the terrible possible side effects, is it true/accurate that in combination of these two meds, the increase of lymphoma goes up that much more? ARGH, I don't want to deal with this.
ALSO, I had a baby boy in April, began to flare in June, put on prednisone and imuran, hair loss began. Now I've been tapered from pred. hair loss STILL continues to shed. My ferritin was at 12 after baby, then 10 in sept., now 8...on Iron now. I have so many reasons why I could be losing my hair!!! Anyone else with this problem. It is still coming out regularily, and I do notice thinning.
P.S. I have no idea if I am in the right section for this post, new here today. Sorry if i intruded on someone's post, lol...I have no idea how this all works
 
You are posting *fine* Kacey. This thread is sort of a running commentary by everyone. If you take a peek backwards you'll see we each post updates or issues and people sometimes comment, or sometimes they don't. It just sort of serves as a repository for future Remi users.

I have a note from an IBD conference I attended last year that your increased risk from lymphoma goes from 4 out of 10,000 to 6 out of 10,000 if you combine anti TNF's (Remi) with immunomodulators (Imuran). The risk is small. I was on methotrexate at the beginning of Remi - they finally took me off because I just couldn't stand the way the MTX made me feel. The reason they do both I believe is to hopefully give you a longer stint with the Remicade - make that drug last as long as possible so you won't build up antibodies. Someone jump in and correct me if I'm wrong there.

Also - this is a *great* article about risks associated with treatment of Crohn's. You can download the pdf file to read it.

http://www.clinicaladvances.com/index.php/our_publications/gastro_hep-article/1515/
 
Never been on Imuran. I was on Remicade for three plus years (stopped in December 2009), and I never really noticed any serious side effect, definitely no hair loss.

But all these drugs seem to effect everyone differently it is hard to tell. I would give it a shot and see how it works for you. When it worked I loved it, but after time it just lost its ability to help me.
 
Kacey said:
I am currently on imuran, and recently had a colonoscopy. Doc found inflammation and bleeding which in reslult, I will now be put on Remicade (once I agree to it after googling every bad side effect lol) Just wondering, if the imuran doesn't seem to be working for me, do you think the doc would keep me on it as well as remicade. I really don't want it, I hate imuran. And of course, after reading all the terrible possible side effects, is it true/accurate that in combination of these two meds, the increase of lymphoma goes up that much more? ARGH, I don't want to deal with this.
ALSO, I had a baby boy in April, began to flare in June, put on prednisone and imuran, hair loss began. Now I've been tapered from pred. hair loss STILL continues to shed. My ferritin was at 12 after baby, then 10 in sept., now 8...on Iron now. I have so many reasons why I could be losing my hair!!! Anyone else with this problem. It is still coming out regularily, and I do notice thinning.
P.S. I have no idea if I am in the right section for this post, new here today. Sorry if i intruded on someone's post, lol...I have no idea how this all works
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Kacey, I always had shedding after all three of my chidren were born...I can't remember exactly when it started, maybe 8 weeks post-partum. Also, I start having hair loss when I lose weight during flares. I think that is from being malnourished. So, it can be from more than one thing. Biotin supplements were recommended to me to help with hair growth. What does your doctor say about the hair loss. Did he check your thyroid?
 
what is the problem of being a week or two late for a maintenance treatment supposedly every eight weeks?
 
Umm, could be a big problem actually. For instance - I get Remi every 8 weeks. I tend to start getting symptomatic at about week 6. The doc did a blood test about 6 months ago and found that right before my next infusion (the time of the blood draw) I had very low levels of Remi circulating in my blood - hence why I was symptomatic before my next infusion.

Also, you do not want to give your body any chance to build resistance to Remicade. How does it do this? One way is to give it a chance to let your immune system kick back in and "learn" that Remicade is foreign - sets you up for infusion reactions as well as the drug just not working as well. So, it is important to keep those intervals up!
 
I have my first infusion tomorrow ... nervous. I absolutely don't like putting crazy drugs in my body but I guess I don't have much of a choice. Any immediate side effects? Or does it take a couple infusions before you know?

It would be lovely if I have no side effects... blah
 
You'll probably just be a little on the tired side after - *maybe* a headache, but I don't see many people complain about that. Good luck - hope everything goes well. Let us know!
 
I just got home too ... I'm a lil drowsy from the benadryl still but other then that I think I'm good.

I wonder how I can judge my progress as I was pretty much symptom free since I had surgery in September.

Next two appointments 1/26 and 2/23
 
Interesting. I never did a routine like that. Been at 8,6 and 4 week cycles over the years. Hope it works out for you!
 
Jennjenn said:
As long as you feel well thats the best judgement for progress that you can have!
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I feel fine for now .. a little hyper and some sensitiveity to light but who knows if it's from this.

I have the hyperness and outgoingness of being drunk without the alcohol .. strange lol
 
Remicade/Infliximab. Same thing? It took me a while!

Hi evryone,
All the best for everyone getting infusions. It took me a little while to figure that the remicade you all speak about is the drug infliximab as I know it. I thought America had some wonder drug I was unaware of!!
I am noticing that some people are on it for sustained periods. In the area that I live in and most surrounding areas in Scotland they give you three infusions. That used to be all but recently they have agreed to give a second course of three.
I remember them (2006 or 07 I think) but I don't remember any nasty side-effects. I do rememeber being extremely tired but my two hour infusion always ended up being a 6 hour epidemic as the nurses were never ready for me, had to wait on the hospital pharmacy releasing drugs etc. What a mare! I have noticed that many people have to pay for it. OMG. That must be bloody exspensive.
What I wanted to ask was do people get the 5 ml steriod injection first right before the infliximab starts? The one where only 1ml is given per minute? If you do, do not let the nurse give you it faster!!! It is one ml for a reason but nurses in a rush tended to forget that in the busy hospital. I remember having the most awful feeling in my groin area. It was like I was getting a tattoo and a thousand needles were peircing my skin at the same time. Weird and kind of painful! Thats the only bad thing I remember from infusions so they obviously didn't effect me too negatively!!!
I think the infusions were partly resonsible for me getting better. I was on azathiaprine at the same time though so it was quite hard to tell. The infliximab didn't heal the fistula and I think thats what my drugd consultant was hoping for.
Anyway enough ranting. I hope everyone has success with the infusions. Enjoy your days off school/work!!
 
plook38 said:
Hi evryone,
All the best for everyone getting infusions. It took me a little while to figure that the remicade you all speak about is the drug infliximab as I know it. I thought America had some wonder drug I was unaware of!!
I am noticing that some people are on it for sustained periods. In the area that I live in and most surrounding areas in Scotland they give you three infusions. That used to be all but recently they have agreed to give a second course of three.
I remember them (2006 or 07 I think) but I don't remember any nasty side-effects. I do rememeber being extremely tired but my two hour infusion always ended up being a 6 hour epidemic as the nurses were never ready for me, had to wait on the hospital pharmacy releasing drugs etc. What a mare! I have noticed that many people have to pay for it. OMG. That must be bloody exspensive.
What I wanted to ask was do people get the 5 ml steriod injection first right before the infliximab starts? The one where only 1ml is given per minute? If you do, do not let the nurse give you it faster!!! It is one ml for a reason but nurses in a rush tended to forget that in the busy hospital. I remember having the most awful feeling in my groin area. It was like I was getting a tattoo and a thousand needles were peircing my skin at the same time. Weird and kind of painful! Thats the only bad thing I remember from infusions so they obviously didn't effect me too negatively!!!
I think the infusions were partly resonsible for me getting better. I was on azathiaprine at the same time though so it was quite hard to tell. The infliximab didn't heal the fistula and I think thats what my drugd consultant was hoping for.
Anyway enough ranting. I hope everyone has success with the infusions. Enjoy your days off school/work!!
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thx for the info!
 
jpetrone said:
I feel fine for now .. a little hyper and some sensitiveity to light but who knows if it's from this.

I have the hyperness and outgoingness of being drunk without the alcohol .. strange lol
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It is probably the benadryl. I bet you feel pretty good tomorrow- I always feel good after a good night's sleep the day after my Remi. The trick to you knowing that it is working is that you don't flare....that is the hope!


PLook - I get a shot of solu-medrol before each infusion - and she pushes it all at the same time. Never had a problem it, been getting it for YEARS. Maybe it isn't the same thing as you were getting.
 
I think I get Salucortex (sp.) Or something that sounds like that, before my Remicade. LOL!

That sucks that you guys arent able to get it consistantly. It has been a real life saver for me.
 
Fog Ducker said:
I think I get Salucortex (sp.) Or something that sounds like that, before my Remicade. LOL!

That sucks that you guys arent able to get it consistantly. It has been a real life saver for me.
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It was probably Solu-cortef....just another corticosteroid.
 
Hello friends,

I've been on Remicade (this time) since around late summer 2009, and was on it a couple years ago, too.

For me it's been a wonder drug. The first time around, back in 2007, it worked so well I didn't believe the doctors who were telling me I had Crohn's disease. I had just been diagnosed and was in denial. I went from unbearable abdominal pain and not being able to sleep through a night in months, to feeling 100% normal. It was fantastic. I must say, I really appreciate the doctors who recommended starting on Remicade immediately when I was diagnosed, rather than building up to it after other drugs.

This time around, it has taken a bit longer to kick in and I don't quite feel 100%, but it makes life much, much better. I also wasn't feeling as bad this time when I started. My dose is 5 mg/kg, and I started with 2 weeks, then 4, and now I've had 2 or 3 of the 8-week intervals. I feel great most days, though I still watch what I eat because some foods can cause me abdominal pain.

Are you guys/gals on short term schedules for your Remicade (a few months, then off), or long term/indefinite? My Dr. hasn't mentioned anything about a stop date, so I've gotten the impression I'll be on it indefinitely. That's fine by me. My insurance covers it so I'm happy.

Has anyone else seen decreased effectiveness of Remicade after stopping, then starting again? Does it build back up again over time?

Also, have any of you donated blood while on Remicade? I used to be a routine blood donor every 8 weeks until Crohn's hit. Now I've had difficulty getting a certain answer on whether or not it's safe for me to give blood while on Remi...
 
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Dave07 said:
Hello friends,
Are you guys/gals on short term schedules for your Remicade (a few months, then off), or long term/indefinite? My Dr. hasn't mentioned anything about a stop date, so I've gotten the impression I'll be on it indefinitely. That's fine by me. My insurance covers it so I'm happy.
.
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I did a short cycle to clear up a Fistula around 2000. I went back on it on a regular 8 week cycle in 2007, then to 6 weeks, then 6 weeks with double the dose, then double up the dose at every 4 weeks. Now off it. Just stopped working. Loved it when it did work though.
 
How come you werent on it consistantly??

I have been on it for 2 years now, I love it, and will be on it till it stops working.
 
Sign me up!

I guess I'll be eligible for the Club this Thursday....scheduled for my first date with Remi.
Little nervous - hope I respond to it as well as some of y'all.
 
Fog Ducker said:
How come you werent on it consistantly??

I have been on it for 2 years now, I love it, and will be on it till it stops working.
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Well the first cycle back in 2000 was just to get a fistula to heal and it worked. I then went into remission for about 6 years. Just took 6-MP and Asacol and was fine, no flares.

Then about three years ago I flared and went back on Remicade at 8 week cycles, then I would get sick around week six. So I moved to 6 week cycles. Then a new Dr. and stayed on 6 but at 10 mg a dose. Then I got sicker and moved to 4 weeks at 10. Then in December of last year I stopped. I would get about three days of feeling good and then nothing. So went back on Pred. until I can get my Humira and Metho started.
 
Brian said:
I guess I'll be eligible for the Club this Thursday....scheduled for my first date with Remi.
Little nervous - hope I respond to it as well as some of y'all.
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Good Luck Brian! I have my 2nd infusion next Tuesday!! Hope this one goes as well as the 1st!

Good LUCK!!!
 
Less than 48 hrs and I become an official Remi club member!!!!!

8:30 am Friday is my first treatment. I think Janis is going with me so she can ask any questions she has bottled up inside.
 
Good luck Pirate and Brian!! Who is Janis going to ask the questions to Pirate? Only my infusion nurse is there and she doesn't really know a lot about our disease - just good at getting that IV in and pushing my Remi. Maybe your doc will be around?
 
Brian said:
I guess I'll be eligible for the Club this Thursday....scheduled for my first date with Remi.
Little nervous - hope I respond to it as well as some of y'all.
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UPDATE:
Well folks, I just returned to work following my 3-hour lunch date with Miss Remi. Nothin to it - piece of cake! I feel fine at the moment. Nice place - great people....they even handed out bagged lunches, offered warm blankets....I kinda wanted to stay longer! :emot-waycool:

Next date is Feb. 5 - we'll see what effect it has til then.....of course I'll remain on the Pred for a while yet, which has been a real blessing past couple weeks! :thumright:

Best Wishes to Y'all!
 
So much for starting tomorrow!!! Stupid insurance company!!! At 5:00 pm Janis gets a call from the Infusion Center and they don't have any paperwork at all for my treatment. No meds, no nothing other than an appointment on the schedule. So Janis calls the insurance company and gets the run around and every body tells her the next # is the one to call. Finally someone decides to check into it and says that we cancelled it in December after they had told Janis back in December that everything was cleared as soon as the Dr's office sent in the orders. Dr's office fax them the same day.. Janis asked them how could it be cancelled the same day they got the orders and after Janis had told them that we were going to do the treatments.

Nothing but a big pain. So I had to cancel my appointment tomorrow morning until we can get this mess straightened out.

On top of all that, Janis lays another bomb shell on me. Our TV quit working and now you guys are stuck with me here until we can replace the TV.
 
I have been on Remicade for 10 years now. After starting off I was getting it every 3 months, then 8wks, now 6 wks. I get Decadron and Benadryl right before and Tylenol. About 2 hours after my treatment I start having severe muscle pains in my back and hot flashes, sometimes nausea. It wears off after about 10 hours and then I can fall asleep. Every once in a while I wake up the next morning feeling awful and have vomitting.
I start getting symptomatic about 5 weeks after treatment- so there is talk about moving them to every 5 wks (I am in denial about that).
 
Have they not thought about switching you to Humira or Cimzia Kristyn? I am no expert - but that sounds an awful lot like you are playing around with possible infusion type reactions.
 
Brian -
Congrats! Welcome to the club! My infusions are like yours - can't even tell anything is going on except for the IV in my arm. I don't feel a bit different while I'm there. Enjoy your bagged lunch and warm blankets - my infusion center doesn't do that!

Kristyn -
I hope your Doc gets you some relief soon. I'm also feeling increasing pain this week, and still have 4 weeks to go till my next infusion. Guess it's time to call my Doc too... Good luck to you.

Pirate -
Hang in there! Just be persistent with the insurance company. Relief is on its way. You can do it!
 
Guess what I did today!! God, I love my wife!!!!

I'll give you a hint. I have a sudden craving for lots of cheese!!!!
 
LMAO- didn't think of that.

Well last night we found out about the problem with my Remicade treatment not be approved. This morning Janis was on the phone at 8:00 with the insurance company and finally talked to someone who could give her answers. After about 20 minutes she had my treatment approved, called the infusion center and had me back in this morning for my first infusion.
We ended up only 1 hr later than my original appointment and everything went great. No reactions today, didn't even have to get Benadryl (?).

I couldn't handle it like Janis can when it comes to insurance companies. Some how she wraps them around her finger and get $hit rolling.

We're back on track again.
 
Awesome! Glad you got it done.

Dealing with insurance companies is the worst. Glad you have someone to give them a talking to for you. I have dropped many a f-bomb on an unsuspecting insurance employee in a fit of rage trying to get something approved lol

I did the pre-meds first time, but never again after that. Didn't like feeling so drowsy the rest of the day.

Hopefully it works well for you!
 
Looks like a lot of new Remi club members recently. Congratulations!! Good luck to you all, I hope it works as well for you as it does for me!
 
CrohnsHobo said:
You merged your DNA with a mouse?
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Ha haa!! Good one! Pirate - sooo glad Janis got it straightened out for you and that is went smooothly as well. Hoping it kicks in quick buddy!
 
Okay, My Butt Hurts says I have to tattle on myself. I lied MBH. I actually ate two 1/4 lb double cheese burgers at Burger King after Janis and I left the Infusion Center today. I haven't had 1 in about a year and it was sooooo good.
Guess what MBH, I'm eating Cheezits right now. Don't know why but I found little mouse turds in my underwear earlier and I can't figure out how they got there.

OMG, I just looked in the mirror and I'm beginning to look like a mouse on steriods.
 
Pirate said:
I actually ate two 1/4 lb double cheese burgers at Burger King after Janis and I left the Infusion Center today. I haven't had 1 in about a year and it was sooooo good.
Guess what MBH, I'm eating Cheezits right now.
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LOLOLOL!!! Remi doesn't kick in THAT fast, silly! Hope you're okay tomorrow.
I TOLD you not to eat the cheeeeese.
(If Pirate doesn't post tomorrow it's cause he's stuck to a mouse trap.)
 
Man does the word get around fast or what!!! I went outside to have a smoke and all of the nieghborhood cats were sitting on the bottom step of our porch just starring at me!! Thank goodness Janis was here. She chased them off with the broom, turned to go back in and looked at me and went EEEEEK, and started hitting me with the broom. Glad that little hole was in the wall. Gave me a place to dive into and hide. Damn that broom hurts when it hits the tail.
 
LOL After I posted that last one about the cats I went out to really have a smoke and the nieghbor's cat did jump up on the porch like she always does to be pet and it scared the crap out of me. I jumped one way and the cat got scared and run off. Thought I was going to have to squeege out my shorts. Damn cat.
 
Soooo round 2 starts today lol ... then after this I guess I come back in 4 weeks.. just waiting for them to start the IV as I lay here in Bed with my Laptop LOL ... at least the girl at the front desk, Amy is cute
 
Listen to you!!! Scoping the babes while getting Remi! Do you seem to notice any difference with your gut yet Jordan? I know it may be a bit early - just always curious how long it takes most people to see a difference with the Remi.
 
Ok well soo far I liked my first nurse better both very nice.. but this one hurts more with the needle and just pushed hydro cortisone into me instead of hanging a bag ... w00t what a rush. Not a fan of that ... sheesh

Peaches ... I was feeling pretty good already since I had the surgery in Sept and I was doing pretty good.

Things I THINK I've noticed lol and I say think because who knows maybe in my head.

But I think I might have more energy some times, and I didn't have diarrhea before the Remi but it seems like its more formed then it was which I guess is always good. lol

I have to really start eating before I come here LOL ... I'm HUNGRY!

The only good thing about this is the hospital is like 2 minutes from my house it takes me longer to actually go up all the levels in the parking garage then to actually get to the building from my home.
 
yay ... so my second dose is done ... I'm due back Feb 23rd.

argg why am I so tired / blah afterward?!

I just want to climb into bed and nap.. but I got stuffs to do!
 
First Remicade Infusion

Hi everyone ! I'm scheduled for my first Remicade Infusion this Tuesday and I have a stupid question. Should I eat breakfast before my 8am appointment or should I wait until afterwards to eat ? I'm pretty much on a liquid diet right now anyway since I can't tolorate solid food, but was wondering whether the infusion will go easier on my system on an empty stomach. Thank you, Kevin
 
Hi Gurgle...Make sure you are well hydrated. It makes it easier for the Nurses to get a vein. At my infusion place they encourage us to eat and drink.
 
Dear My Butt hurts
I've just started Prednesolone at 40mg for 28 days then gotta reduce by 5mg each week til zero is reached, about mid April I think.
I've read horror stories, moon face? buffalo neck? purple arms amd legs? bald? blind? My God, will this really happen to me? What side effects did you get? So far I'm a bit light headed, very fatigued and an insomniac, little bit headachey and sometimes feel sick, but eating ok, sofar so good. on Pentasa too. But I've no pains in tum, thanks xx
 
Had my first Remicade Infusion this morning. Quite a pleasant experience actually. Chatted with a couple of fellow Chronies and listened to some tunes to pass the time. I had a small breakfast (thanks Brian) and the nurse had no trouble finding a vein since I was well hydrated (thanks Imisspopcorn). Feeling pretty positive that relief is just around the corner.
Thanks for the support everyone. - Kevin
 
Glad it was such a plesant experience for you Kevin. I feel the same about getting mine. Love going there and not just cause Im getting my Remi.
I hope it helps you as much as it has me. :)
 

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