Remicade Club Support Group

Crohn's Disease Forum

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I'm going for my second infusion in about a week here... My first was during a 9-day hospital stay, where I felt lousy and sick nearly the entire time. Then suddenly, Remicade! I've not felt better than this in months, truthfully. I'm not going 5+ times a day, but I'm going about once every 3 days, normally so. It gives me hope that I will go into remission for a long time. I'm on the young side of diagnosis age, and I still want to have a good life ahead of me for years to come. Remicade will hopefully grant that...
 
Had my 2nd infusion earlier today, so fingers crossed i start to feel something(anything)

I kinda stumped the ward sister as we were speaking about how ive been feeling since the first infusion and i suppose im after someone on here who has had remicade, to talk through the 'changes' since starting remicade, whereby its done some good for their crohns?!

Basically before starting remicade I...

-only get up once in the night
-i dont get ANY stomach cramps or pains
-i go to the loo 8-10 times a day, no blood or mucus
-i do get days where i feel dehydrated, tired and get throbbing back passage.

So, having said all the to the ward sister, i could kind of see in her eyes what she was thinking...hes doing ok, does he really need it and what is this guy expecting..

-whats the biggest change people have noticed? what do they class as 'remission' when taking remicade?
 
This is what I'm trying to figure out...how and is it actually working as I don't feel any different than before I started??!!

I know today was only my 2nd infusion,but how do people 'really' tell if it's doing anything?!
 
Mr Bedfordshire said:
This is what I'm trying to figure out...how and is it actually working as I don't feel any different than before I started??!!

I know today was only my 2nd infusion,but how do people 'really' tell if it's doing anything?!
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I didn't feel any difference after the first one, but the day after the second I felt brilliant! Virtually no pain, bladder feeling back to normal ( had a bowel to bladder fistula ) and and just an allover feeling of wellbeing.
I had severe inflammation in the ileocaecal area and the IBD nurse says my next appointment will probably be a scope ( oh joy! ) to assess progress.
 
Mr Bedfordshire said:
This is what I'm trying to figure out...how and is it actually working as I don't feel any different than before I started??!!

I know today was only my 2nd infusion,but how do people 'really' tell if it's doing anything?!
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I think it's important for me and the rest of us to remember that Remicade is a maintenance drug. So if we're already well, theoretically it will keep us well. :)

For me, it was when my blood work came back normal that I knew it was working. Everything is in order. Crossing my fingers that it will stay that way. Plus... I have only 1 or 2 BMs a day, formed, no blood, no mucous.

I hope that you continue to do well, Mr! :hug:
 
So I guess if its going to work then I should 'feel' better generally and the amount of times I visit the loo should decrease?!

Woken up feeling ok,but still been to loo twice within an hour of getting up (which I've been doing for 4 years). I'll now take my codeine,which usually sees me through to 1pm ish.

Fingers and everything else crossed for a change!

Thanks everyone!
 
@ Mr ~ Everyone is different, but that's the hope. Also, some people believe that the body has formed a habit of going at the same times each morning. If that's true, the habits can change if your bowels will let you change them. Hopefully the Remicade will assist you.

@ Cait ~ Hi and welcome! Nerves and excitement are normal. Just be sure that you're very hydrated when you go in on Friday. And prepare for a long stay. I took my laptop and some books and snacks. Ask if they have a tv or internet connection. I ended up watching a dvd on my macbook while I was there. It was like a date with my hubby. :)
 
@ Jessi- thanks im glad thiers places like this where we can all talk about what were goin through and people actualy understand and can relaite :) im guna bring my laptop they have wifi and i have netflix so i should be good to go :)
 
Had my first remicade infusion today and it went good and i feel fine except my arm is just a lil sore but other than that its all good yay! :)
 
IV league! Love it! I'm in! Remicade every 6 weeks in combo with Imuran. I have a reaction to remicade so I have 3 pre-meds too. So, it takes 5.5 hours but my Blackberry, Kindle and Ipod keep me busy before the Benadryl kicks in. lol - The staff in the infusions room are absolutley wonderful which is a big bonus!

I always schedule the infusion on a Friday so I can rest Saturday and Sunday and do not miss more than one day of work.
 
Well,it's been 5 days since my 2nd infusion and I'm not feeling any different-aarrgghh!!!

Having said that,im not sure 'what' to expect??

I'd be happy with not going to the loo during the day so much,then I can get back down the gym:dance:
 
I started getting it when I was 17 or 18 and was one of the first to have remicade. And I have had it every 8 weeks for the past 12 or 13 years. It started to lose its strength a few years back (not quite getting 8 wks). So then my dr. prescibed predisone the day before, day of, and day after and that seemed to work.
 
Hey, Aust. That's really cool! I haven't heard of that method before. When Remicade begins to lose it's efficacy, most GIs will order it to be done closer together, every 6 weeks for example.
 
Yea, sometimes I will go past 8 wks before I start to feel sick again. I am just tired of getting a IV and sitting in the hospital getting infused every 8wks for 12 years, but what ever works!
 
Starting to get a bit annoyed and frustrated now as since my 2nd infusion and my consultant stopping the 6-mercaptopurine,I've:-

1) not felt any different
and
2) my backside is very sore,which it hasn't been for a good year or so now-aarrgghh?!!!!!

My levels of Mrv or mcr (sorry can't remember what they said) are high from blood test before infusion no.2,they stopped the 6mp and now I'm just on pentasa granules and Remicade?!

Starting to think that 'yet again' I would've tried something new and it's done nothing??!!:(:ybatty:
 
Mr B, did they say why they stopped the 6mp? They kept me on the Aza cos, according to the IBD nurse, it a can stop your body rejecting the Remi and can treatment with both drugs can be more effective.
 
Grumbletum said:
Mr B, did they say why they stopped the 6mp? They kept me on the Aza cos, according to the IBD nurse, it a can stop your body rejecting the Remi and can treatment with both drugs can be more effective.
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The IBS nurse sat me down before my 2nd remicade infusion and said that due to some raised level of something in my recent blood test, i should stop taking the mercaptopurine. I cant fully remember what she said it was, but it was something like a raised MRV MVB OR MRC blood count and they said it was due to the mercaptopurine.

Just gutted that im not feeling any different.:ymad:
 
Ah, OK. It's stii early days with the Remi, though. Some people seem to feel better after one infusion and for others it takes longer. I felt better after no 2, but I was still on Pred. Had a few grumbles since weaning completely off.
Hope it does kick in for you soon. The waiting is hard I know. Took me 8 painful months to get diagnosed and was so relieved when I did, thinking I'd get well fast.
The battle goes on.
 
Hi everyone,

My name is Chad and I have indeterminate colitis/Crohns. I am allergic to most medicines so the only thing i can take right now is Remicade. I just had my fourth infusion yesterday. After every infusion I have tremendous back and leg pains that do not go away. Yesterday, several hours after my infusion my blood pressure went way up to 166/85(normal for me 100/65) and my pulse shot up to 131(normal 70). My gastro cannot seem to figure out what is happening. Has this happened to anyone else?
 
Remicade infusion this morning, yay!! I can't wait to get to the infusion lab and do nothing!! I love my infusion days, they are an excuse to stay off my feet and relax for 3-4 hours.

I hope everyone else is feeling fantastic! Have a great day!
 
Hi everybody,


I am glad to have this club ...At least we can get experience from each other.Well, I will start it next week. Any advice
 
Hydration is key for me. Take a good book, ipod, movie (if they have a tv and player), laptop (if they have internet, you can post on CF) :), or anything else to pass the time. You might even just take a nap. I took snacks to munch on and I'm glad I did, because it ended up taking longer than planned.

Good luck. I hope it goes well. :hug:
 
My next infusion is scheduled for January 3rd - had to go to a day later because of the holiday.....going to try going to work afterwards....appt is for 930am...we will see! lol...
 
Jessi - Good idea to take snacks!

My infusion went great today, they didn't have the IV benadryl so they gave me a pill instead. I'm sleepier now than I usually am, I guess maybe the IV benadryl wears off or gets out of my system faster? However, I didn't have the restless legs the IV stuff usually gives me. I think that is the lesser of two evils, maybe I will ask for the pill from now on!

Since my surgery, I've had nothing but diarrhea, no formed stools, probably due to not having very much small bowel left. I go at least 5 times in a row, first thing in the morning, and I always have to go right after I eat. So, STUPID ME, I skip breakfast before my 8:30 am infusion time. I just didn't want to have bathroom issues once my infusion started and I was all hooked up to an IV and BP machine. It's fine to take a short trip down the hall if I have to tinkle, but if I had to GO, I just wouldn't be able to push that pole fast enough.

Anyway, point of my really long story is, I felt okay, and wasn't even really hungry the entire time I was there. Mostly just sleepy. I was supposed to meet my husband for lunch when I was finished, he works right around the corner from the hospital. I was done at 11:30 am, and by the time I got there I was really nauseated. I felt better once I ate something, and it could also have been the heat. I was in long pants because the infusion lab is freezing, but it is 84 outside today here and I'm on prednisone.

So. No more Remicade on an empty stomach, even if it means I do my entire infusion in the bathroom.
 
Glad it went well for you!

I've got my 3rd infusion in 2 weeks time,but given I don't feel any different after the 2 I've had,I'm not holding out much hope?!

My consultants stopped my mercaptopurine and I don't feel 'as' good as when I was taking it?!

It is nice to read success stories tho :ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin::emot-waycool::emot-waycool::emot-waycool::emot-waycool:
 
chadmock said:
Hi everyone,

My name is Chad and I have indeterminate colitis/Crohns. I am allergic to most medicines so the only thing i can take right now is Remicade. I just had my fourth infusion yesterday. After every infusion I have tremendous back and leg pains that do not go away. Yesterday, several hours after my infusion my blood pressure went way up to 166/85(normal for me 100/65) and my pulse shot up to 131(normal 70). My gastro cannot seem to figure out what is happening. Has this happened to anyone else?
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Hi Chad. I believe joint pain is quite a common side effect. I was fine after 1 and 2. I had 3 about three weeks ago and have had pain in my knees, hips and shoulders. Seems to be easing off this week.
Has the doc ruled out an allergic reaction?
 
Hello everyone,

Just thought I'd say howdy and that I too am joining the Remicade club! Woop!

First infusion is 23rd November :) Wish me luck!

When you say its important to stay hydrated is that the day before, during and after?

Any tips or advice would be much appreciated! :)

Becky x
 
@Porkpie - yes, it would be a good idea to start the day before with hydration - you want to make sure you veins are nice and 'ripe' - makes getting the IV in easier!

One thing I do too once I get to the clinic is make sure I pee before getting hooked up! lol....then I can usually make it through the infusion without having to drag an IV pole with me.

Take something to do with you - book, computer etc....and you should find out if they are going to pre-medicate you - so you know if you might have any trouble driving home after.

Good luck - let us know how you make out!
 
Becky, as Paso said, hydrate the day before. But I personally need to hydrate before and during the infusion. That's just me, though. Because of that, I am dragging my pole to the bathroom several times to relieve my bladder. :) (Even if I go right before.)

Good luck on the 23rd! I really hope it works for you. :hug:
 
Thanks jessi :))

Well, I'm in the way to the hospital to do the blood test !! I am depressed bcz I missed my classes for week know and I am still sick !!! I feel I can't do anything.
I need support :(
 
aust81 said:
It started to lose its strength a few years back So then my dr. prescibed predisone the day before, day of, and day after and that seemed to work.
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This is a great tip that I wouldn't have thought of. What was the dose?

I just had my 3 year Remiversary on November 10th, and I always wonder how long I will have until it will stop working.
 
Pasobuff and Jessi thank you for your advice on hydration. I can feel the nerves building now and will definitely report in after the infusion. Really hope it is stress free! :)

Another question though for anyone who lives in the UK. Can you generally use a laptop during your infusion at an NHS hospital?? With it being a free service Im abit worried that they'll expect me to entertain myself by making shadow hand puppets on playing conkers! haha Being able to surf the internet whilst being treated seems to good to be true! :)

Becky x
 
I'm sure you can Becky. I take my iPhone. And a book and they have a big flatscreen. The infusion team are great, very friendly and chatty and order us lunch from the hospital menu, and have tea and biscuits on hand. I'd take my knitting, but the machine doesn't seem to like too much arm movement and beeps!
 
Porkpie84 said:
Pasobuff and Jessi thank you for your advice on hydration. I can feel the nerves building now and will definitely report in after the infusion. Really hope it is stress free! :)

Another question though for anyone who lives in the UK. Can you generally use a laptop during your infusion at an NHS hospital?? With it being a free service Im abit worried that they'll expect me to entertain myself by making shadow hand puppets on playing conkers! haha Being able to surf the internet whilst being treated seems to good to be true! :)

Becky x
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Becky,

I'm in the uk and I I've seen people with laptops, DVD players, so u can pretty much take what you like! I usually just take my iPhone, and buy a paper on the way in, but my best entertainment is people watching:cool:

They give me lunch and 'free refills' on tea and coffee.

All the best!
 
Hey all. I just got back from my sigmoidoscopy and well it was not so good news. After having the disease for 2 years and in severe form, on lialda and 50 mgs of 6mp for a full year(together) I should be in a better state than I am now. The good news is that my disease is now in moderate or mild form but its not where my doctor wants me to be. The next step is remacaid, so I now join the remicaid club. Assuming everything goes we'll with vaccinations and such.

Let me introduce myself. My name is Melissa have had this disease for 2 years and ill be starting remicaid soon.(I had to edit...I haven't had the disease for 22 years lmao)
 
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HI MELISSA! I hope Remicade works for you the way it does for me. :hug: Good luck, babe!
 
Hi Everybody,

I just got my first Remicade today and I had difficulty to breath . Then, I felt better :)

I wish all the best for everyone ......
 
i just got my remicade 2 days ago... it hasn't kicked in yet :/ but when it does it is great lol i started remicade in march ..
 
Well, its remicade infusion number 3 tomorrow and im sat here hoping its 3rd time lucky and that it starts to work.:confused2:

Havent been on 6mercaptopurine since my 2nd infusion due to something showing up on my blood test and i dont feel as good as when i was on it, so we'll see what they say tomorrow.

Looking forward to kicking back and people watching for 4hrs.

Hope everyone is well.

Keep smiling:kiss:
 
Sorry-it wasn't the Remicade that has made me feel better, it was the mercaptopurine?!

Sat here,just started infusion no.3, with chicken curry-lovely! I think this may be my last infusion as doctors didn't look to confident when I said I've already had 2 and don't feel any different?!

Fingers crossed this one kicks in?!!
 
Started in July 2010, and I'm on 5 vials every 6 weeks. :)
Loving the stuff so far, was the first real sense of relief since I was diagnosed.
 
LynE.....you say sense of relief........in what way and what did Remicade relieve. I need to make a decision soon and would like to know what the future on Remicade might hold.
thanks.
 
Judith, if you don't mind me answering your question... For me, relief means that I have no more D, I have gone from 10+ BMs a day to just 1 a day (normal soft and formed), I have regained a good amount of energy, I eat almost anything I want to eat, I have motivation to finish home projects again, and most importantly: I am a mom and wife again (no longer "too out of it" to be there for my family). :hug:
 
Jessi said:
Judith, if you don't mind me answering your question... For me, relief means that I have no more D, I have gone from 10+ BMs a day to just 1 a day (normal soft and formed), I have regained a good amount of energy, I eat almost anything I want to eat, I have motivation to finish home projects again, and most importantly: I am a mom and wife again (no longer "too out of it" to be there for my family). :hug:
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Wow! Just once to the loo in a day?! That must make such a difference jessi? Great to hear success stories! I've had 3 Remicade infusions and 'still' go to the loo 8-10 times a day?! I've pretty much admitted defeat and told myself it hasn't done anything and I'm looking at and researching other meds now!
 
MrB...what dosage of Remicade are you on? Have you felt ANY difference? Remember, it isn't a one-size fits all dose.....they can be increased and/or done closer together.....

Due to the possibility of not being able to try it again, I'd give it as much time as I could to get it to work......
 
Hi All,
I am due for my 2nd infusion this Friday and hope I feel better.
Had to postpone this one 10 days because I had a horrid cough and clod.
Will let you know how it goes.
Sharon xxxx
 
pasobuff said:
MrB...what dosage of Remicade are you on? Have you felt ANY difference? Remember, it isn't a one-size fits all dose.....they can be increased and/or done closer together.....

Due to the possibility of not being able to try it again, I'd give it as much time as I could to get it to work......
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To be honest I've no idea what dose I'm on?! I haven't felt any different; I still go 8-10 times a day and get very tired days.

I'm due to see my consultant in 2weeks for a scope and consultation, but the IBS nurse who I spoke to yesterday suggested that it should've done 'something' by now and that she thinks my consultant will maybe stop it and try something else, but we'll see what he says and sees with the scope.
 
Mr Bedfordshire said:
Wow! Just once to the loo in a day?! That must make such a difference jessi? Great to hear success stories! I've had 3 Remicade infusions and 'still' go to the loo 8-10 times a day?! I've pretty much admitted defeat and told myself it hasn't done anything and I'm looking at and researching other meds now!
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Hey Mr. B ~ Sorry it hasn't helped yet. You may want to wait it out a bit longer. It was by my 4th infusion that my doctor called it remission. It takes a bit of time. It's a gradual progression. I'm crossing my fingers for you! :hug:

And good luck, Sharon! I'm getting #5 this Friday.
 
Hi, I have been on Remicade aka Infliximab infusions and for a while it went really well. Then one time they stopped the infusion because I started getting itchy blotches on my arms and torso, they waited for things to calm down and re-started at a slower rate and I was fine. A few infusions later they had to call things to a halt because I started feeling a bit breathless. Again after waiting a while and re-starting at a lower rate I was fine. What stopped my relationship with Remicade was my last reaction which resulted in crippling arthritic pain in my hands, hips, knees and ankles and blotches around all my joints and around my eyes. This resulted in a hospital stay where my bloods where showing positive results for markers of Lupus! My GI and Rheumatology docs eventually put this down to the Remicade and were quite interested because they had not see a reaction like this before to Remicade. I was just wondering if anyone else had ever experienced anything like this? I am not trying to scare anyone off having this as a treatment - we are all different and react to things differently, I am mainly just curious.
 
So I got a call from my GP today saying he received a letter from my GI and needed to see me. So I beleive we'll get started on all the vaccines and tests needed to begin remicaid. I see my GI on the 27th so hopefully everything will be set and ready to go to start it. Really it couldn;t have come at a better time either! It seems the last couple of days my body has staked a revolt against me and I feel like I did before my diagnosis...in other words lots of blood and trips to the bathroom.
 
Hi folks, looks like I will be joining your club. Nothing tried has worked so far, so GI has lined me up for Remicade. I'm frightened, but will do what I have to do. I've been up and down flaring badly since February, and right now it's not good at all, the pain seems to be increasing. Oh gosh.
 
Hi am new to the forum and I get my very first infusion of Remicade next week. I'm kind of nervous. I hope this stuff works.
It's a bitter sweet feeling of excited and nervous all at the same time today.
Wish me luck!!
 
For me it stopped my bleeding and my overnight visits to the bathroom. Sadly yesterday was my last as it was not meant to be.
Following a nice pattern I have with all my meds, I have now become allergic to it on my 2nd dose.
SO GUTTED.
Never mind.
I wish everyone who tries it the very best of luck and I will still pop in from time to time to see how you are all doing.
Sharon xxxx
 
I first had Infliximab in 2006, I stopped it in 2007 and then continued azathioprine (I participated in a trial, and had to take the two drugs together) this kept me in remission until earlier this year, although it kinda sucks spending most of the day in hospital, the results are way worth it!
 
Sharon ~ I am so sorry that it failed you. I hope you find a plan that works for you. :hug:
 
1 year

I have been on Remicade for one year. I will be getting my 9th infusion tomorrow. I am certainly doing much better that I was a year ago and I am thankful for that. I still have problems and I am not 100% back to normal but I am able to get on with life. I graduate from college December 17. I began on a low dose of Remicade and had some success with it but began feeling worse had having more problems with fistulas last summer so in August my dose was doubled. Tomorrow will be my third infusion at the higher dose and I am optimistic that I will continue to find improvement from this medication. I have read stories about other people that felt better right away after the first dose. That wasn't the case for me. I have had a slow but steady progress with a few setbacks. But then again, didn't the tortoise win the race?!!! I have checked back with this forum every now and then. At first I visited for me. Mostly to learn but is was also nice to hear that I was not alone. Now I feel it is only fair to share a little with those who shared with me. I realize there is a wide spectrum of difficulties that crohn's presents to each of us, but it is how we handle them that determines our character. I have been amazed by some of the stories people have posted here and how people have overcome the challanges of this disease despite it seeming to be neverending. There is hope for all of us as long as we have faith.
 
That's beautiful, Beach. Thanks for sharing your hope and optimism with us.
I'm glad the Remi is still serving you. :hug:
 
Could I ask you, how was your first Remi infusion set up? Did you have any tests for infections/or blood work of any kind prior to? Did anyone call you from hospital or infusion center to discuss anything? Do any of you have a permanent port for the infusion?
 
@ Judith ~ Because of my high anxiety to the catheter placement, it was just mentioned to me this morning that I look into getting a permanent port. What do you know about them?

I had to do blood tests before starting Remi. I remember one being tuberculosis. I was sent home with a very informative brochure and DVD on Remicade benefits and side effects. My doctor and his nurses answered any questions I had afterwards.
 
Tests for tuberculosis are standard before starting Remicade. Additional tests may be ordered depending on physician preference, but I think everybody also has a CBC and CMP done first too.

The infusion nurse at the place I go to called me before my first infusion to get basic information from me and to answer all of my questions. Some centers automatically give antihistamines before an infusion, but usually that is only done if you have an allergic reaction with your infusion. The infusions are given through a regular IV needle, not with a port.
 
Alrighty back from the doctor today and I have answers on all the vaccines and stuff both doctors want me to get
- Flu Shot(done)
- Pnuemonia Shot(done)
- TB test(negetive)
- Chicken Pox shot(immuned)
- Hepitis B (immuned)
- MMR(immuned)
- Hepitis A(needs to be done)
- Tetnus(needs done)
- HPV(needs done)

IPV and Meningitis I'm not sure on, they may be in the "being checked" range or I may not need them at all. My original thought is DANG! That is a lot of shots. Then my doctor tells me that insurances no longer cover vaccines for adults which is a huge bummer so he told me I'll need to go to the health dept sometime and get my vaccines done(the health dept shots cost nothing or up to 4 bucks a shot compared to hundreds of dollars) *sigh* the things I'll do to get this colon to be of use again...
 
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Hi Jessi.....regarding permanent ports. Mom had a port with her chemo. I've had chemo, (no port) with breast cancer so can only use one arm for BP/shots etc.. I'm worried that thin bad veins might cause a problem on the only arm that can be used. I guess I'll deal with it when the time comes.
 
@ Judith ~ Drink a lot of water prior to the infusion to plump up your veins.

How is the port put in? Where do they put it? Does it require stitches and healing time? Do they have to flush it every once in awhile?
 
Jessi......the Port is put in usually in chest by day surgery. Removed in same way. It does have stitches and a few days of healing time. And yes, they did have to flush my Mom's now and then. The area must be kept very clean.
 
I received my first infusion today. So far no side effects except some drowsiness. I haven't noticed a difference in pain yet but we will see.
 
Had mine yesterday and it went well. They said it could take a little kick in. Felt a little tired today and my joints were a little sore but that was expected too. Hopefully this gets me in good shape.
 
To those of you who received their first infusion.....did anyone sit down with you to talk about Remicade and its effect/side effects prior to the infusion. Anyone other than the Dr.
 
The infusion nurse spent about 30 minutes with me going over all of the possible side effects and early warning signs of reaction, in addition to what to avoid (sick contacts, live vaccines) during the endurance of taking Remicade....and provided paperwork with that same information on it for me to take home.
 
I started remicade June 2010. I had a great year, then a flare this summer after which they decided to increase my dosage. So far since my new dosage level 2 infusions ago, I was able to wean off prednisone (again) and am feeling pretty great. Remicade has given me 1 year and 4 months of relief so far. I am seriously hoping for a lot more.
 
So sorry to hear about your little girl Rowan. I will keep her in my prayers. I have Crohns and the Remi offered to me will be hours long IV. This may be totally different for a young child. Good luck and God bless.
 
Well last night I found myself in th ER receiving IV fluids and an injection of steriods. They checked out my urine and found keytones(when your body starts eating the stored fat) and white cells which I don;t have any urinary infection symptoms(confusing) anywayI was released around midnight and told to call my GI. Well I call him today and we discussed a few things over the phone. He called ina script for prednisone to take while we wait for my next office visit(a couple of days after Christmas) to get things calmed down. From there we can discuss when to start the remicaid

The good news is we also discussed what vaccines I still needed and how I may not be able to get them before our next appointment and he told me that the ones needed probably won;t hold me up to much in the pursute for remicade. At this point it seems like it's soo far away though :( I just wish I were healthy and normal.

Oh and true story. Sitting in a car in a 3 hour line on an army base with this disease major urgency no bathrooms...really not fun. If I weren;t struggling with money so much because of this reched disease and if I didn;t love my son as much as I do I would have soo left toys for tots the first time I crapped my pants. I'll tell you what though. That shower after I got home was absolutly amazing. Nohing like scrubbing embarrassment, shame and disgust off of you(and it's even better cming home to a wonderful fiance who threw all my shitty clothes in the wash while I showered)
 
Sorry you're having such a tough time right now, Melissa. I hope the prednisone helps until you can start the Remicade.

:hug:
 
New Member

My daughter was just told she needs to go on Remicade. She will probably go in next week for her first infusion. She is 16 and very afraid. Any advice for the first timer?
 
To k'smom: I was very worried about my first infusion too. I don't enjoy iv starts and that's the worst part of it. What I did was I brought a big purse full of treats that I can eat that I don't usually indulge in and snacked on those (my infusion was near lunch time). I sometimes bring my ipod so I can listen to music and zone out. Sometimes I bring something to read or a project I can do in my lap. I'll ask the nurses to put the iv in my left hand so I can bend my arms without making the machine beep. Also so if I go to the bathroom it will be easier since I'm right-handed. Tell her if she drinks a bunch of water (like 8 cups) over a few hours before the infusion it will make the iv placement easier. Unfortunately she'll probably then have to pee a bunch but if she's in a chron's flare she'll have to go to the bathroom a lot anyway. Which brings me to what I always tell the nurses. Almost every time I just say, I go to the bathroom a lot and usually have to rush, so if we could make a clear path for me to get my iv stand out that would be perfect. My nurses will unplug it or let me unplug my machine and then I just take the whole thing for a walk down the hall to the bathroom and then go back to the room when I am done. Before the infusion starts they give me pre-meds, allegra and tylenol. And they weigh you to see how much medication to order. Plan on being there for up to 4 hours for your first time. My infusion room is a pretty friendly place with lots of patients and nurses and usually the nurses will ask if you need a snack or how you are feeling. They check your blood pressure and heart rate constantly. Don't be afraid to ask for a warm blanket or water or whatever if you need it. They usually keep you for observation after your first infusion for about a half hour. Remember that if you're starting remicade you probably know all the risks and you've decided that it's at least worth a shot (no pun intended), so just hope for the best, let yourself cry (my nurses are used to it now), and hopefully remicade will help you feel better soon!
 
k'smom said:
My daughter was just told she needs to go on Remicade. She will probably go in next week for her first infusion. She is 16 and very afraid. Any advice for the first timer?
Click to expand...

Its very easy .... usually takes about 2-3 hours. If you have a reaction to it which a LOT of people do its not usually until the 2-4th time not sure why but thats the way it is.
I am allergic but never had my 1st reaction until the 3rd infusion and now they have to drug me BEFORE treatment so I wont have one.
The worst part is watching your self after your start, if someone is sick especially a BAD virus like the flu or vomiting and ect... her immune system will be really low now and she will need to be more careful about being around sick people.

Also if they give the flu MIST at her school ( not the shot) the mist is a LIVE virus and when they give it out places people on remicade are in danger its in the air and the person getting the mist can carry the flu around for up to a week.

Good luck let us know how she did
I have been on it since 2006
 
I have been on remicade for over a year. It has helped me. I haven't had any serious reactions although I usually nap through most of the infusion. The blood pressure cuff wakes me periodically. I have talked to several people at the hospital that have also had good results from this medication. It doesn't work for everyone but there are other medications. Don't worry yourself over the possible side effects you may read about. From my understanding the serious side effects are rare. Follow the instructions of your doctor. This medications has been used a long time to treat several types of conditions.
 
I just had infusion #21 a week ago. I was having some symptoms reappear 3 days prior, so I will keep a watch to see if I slip close to my next infusion as well.
I'm still at 8 weeks apart, and only 400 mg (ml?) so I still have plenty of room to adjust if need be.
The good news is, it only took 20 hours post infusion to feel back to remission again.

EDIT - Not #31, #21.
Whoops!
 
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