Remicade Club Support Group

Crohn's Disease Forum

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My Butt Hurts said:
I find that the time goes by very quickly. I bring my ipod to listen to, phone to text people, and my laptop to browse facebook, CF, flickr, and other sites for 3 - 4 hours. I usually bring a snack and some water, and sometimes a magazine. I could seriously sit there for 10 hours if I had to =) It's like a spa day for me, not kidding.
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LOL...I'm like that too! That is my 'relaxation time' away from everone and everything.....

I usually bring a book, used to bring needlepoint but that can get tricky with the IV.....and they have televisions with cable, so I usually watch Law and Order.......hubby hates the show so I catch up then! lol.....
 
I have my first Remicade treatment tomorrow! Very nervous, but happy that this might be the beginning of something better for me :)
 
Good Luck ashley. I am going for my 3rd infusion in 2 days....So far it has been the best thing I have been on! Hope it keeps up!

And Mummy Bear...It takes around 2 hours. Take something to do...it can get boreing
 
Mine generally take about 2 1/2 hours give or take, depending. The one I had yesterday though took longer, I was there about 4 hours total, but everything was new, including where I got the infusion at, so it should be smoother next time. The infusing part took about 3 hours or so though. Like the others though, I don't really mind. I find it kind of a relaxation time. It seemed long yesterday because I was starving the whole time. Lol I only ate a small breakfast because I didn't think it would be that long. Oh well, I know to eat a bigger breakfast for the next time. Haha
 
I usually get mine @1pm - and am out by 4-ish.....that includes wait time, mixing meds etc.....

I also stop and pick up lunch on the way, and eat there.....helps pass the time too! My next appt is Aug 21st - I'll work from 7am-12pm, then my appt is at 1230....about 2 miles up the road from where I work.....
 
Hi everyone! I'm new here, just got diagnosed last week. I'm starting remicade in 2 weeks, and another poster pointed me towards this thread. It's quite the thread, I certainly haven't been able to read it all but it's great to know I'm not the only one. I'm nervous, but very hopeful that this will help me!

ETA: They just called and said they had a cancellation, so I will be going for my first infusion tomorrow! yikes!
 
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SO I just had my first infusion yesterday, which was surprisingly fast as I had e-mailed the coordinator the day before to find out when I could start them.

I'm in the middle of a bad flare up. I've lost 20 pounds in 3 weeks. I spent all of last week in the hospital on a liquid diet and IV steroids, and received 2 blood transfusion. They released me on 50mg of prednisone, which doesn't seem to be working.

I have a question for those who have UC and are on Remicade. When did you start to notice a change?
 
Hi vonfunk,
I noticed a change the next day ! Has been working very well for ever since. Recently had my 4th infusion which now only takes about 1hr to get :) I'm receiving Remicade every 8 weeks.
 
Thanks Uli, I had my first one on Wednesday, I'm also on a high dose of steroids which didn't seem to be doing anything, however a day or so after I had my first infusion I started noticing some changes.
 
Remicade here I come

Well it looks as though tomorrow morning I will begin my journey with Remicade.

To give you guys a little back story, I've been on Prednisone for the last 4 and a half months slowly tapering (now on 10mg a day) and have actually been feeling great minus a few side effects (mostly joint and leg pain). My BMs are normal, I eat pretty much whatever I want without stomach pains...its really been unbelievable.

However, as we all know...steroids are not a long term option for Crohn's and my doctor has recommended I start Remicade so he can ween me completely of the prednisone. I believe the plan is to keep me on Remicade for about 6-8 months and then move me to 6 Mercaptapurine which will be my long term med to keep me in remission.

I have to admit I am a little nervous about getting my infusion (after reading about many of the short and long term side effects) and also hate that it takes so long to do (they said about 2 1/2 hours) however if this is the next step that will ultimately put me into FT remission then I will do whatever it takes.

It's great having such great support here and it looks as though Remicade has really been a miracle drug for a lot of you - which makes me feel a lot better about it.

I will definitely keep you guys updated on my epic journey to Mt. Remicade ;-)
 
hello everyone,
i'm joining the remi group and leaving the humira club for good.
i've been on everything so far that is offered for crohn's and nothing helps me at all. i thought the humira was actually gonna do it but i only felt better for about a week after my loading doses then back to square one. i am actually looking forward to starting remicade i have hope that this will do the trick. my dr seems to think so, the only reason we waited so long was b/c he thinks its inconvenient. now that i am unemployed and sitting at home miserable all day he decided it time to stop beating around the bush and bring out the big guns!!! so i go in for my first infusion this tuesday and believe me i am counting down the hours. does anyone know what else is next. what if i still see no improvement from remicade, i feel like there is nothing else to try. well, hopefully i wont have to worry about it and in a month or so i'll be back to my old self...if i even know who that is anymore. ;)

WISH ME LUCK!!!!!
 
To the newbies in the Remicade Club............


:goodluck::goodluck::goodluck::goodluck::goodluck:



WITH YOUR JOURNEY'S!!!!!!!


Fingers and toes crossed guys, :)
Dusty
 
Quick question. Does anyone else start itching during the infusion? I dont mean constant itching. I find sometimes, every once in a while, the area around my IV, and sometimes a little up my arm from the IV site starts itching. Its like that type of itch, where scratching it doesnt help.(cant really scratch anyway with the IV in place lol) Its nothing bad or intolerable, and its not constant through the whole infusion. It just happens every once in a while for a few minutes. My last infusion it happened maybe twice through the whole thing. It didnt last very long, oh and its always the hand where the IV is. I'm not worried about it, like I said, its very minor and its only itching, no rashes come up or no other symtoms, I was just curious if anyone else experianced this.
 
remicade side effect

I was diagnosed in 1968 and it took 42 years to get me on remicade. Only problem is it seems to be irritating my knuckles. Arthritic pain to be exact and perhaps rheumatoid. strange because I understand remicade is good for that kind of arthritic condition.
Anybody else have this kind of reaction to remicade.. Of course it could just be old man's disease....


ted
 
Remicade and Mersa

Well I've had a flare after my second infusion of remicade. The flare seems to have calmed down so I've avoided Prednisone for now. I'm due for my third infusion at the end of August. Have any of you had flares when beginning remicade? Another question,I have a few friends who have mersa,I see them in public places but so far have not let them stay at my home. Is this reasonable or am I being overly cautious ? I feel that being on remicade and imuran has made my immune system very susceptible to this type of infection.(plus I'm due for hip replacement). How do you deal with it? I've had some bad reactions!
 
My boyfriend knew a guy who had MRSA and they invited us over for a BBQ and I refused to even step foot in the house (I was on imuran and Humira). I don't think you're being over cautios.
 
Remicade and Mersa

Thanks for the heads up! It's very hard to inform long time friends that I can't take a chance having them stay at my home. I've sent out some info and a letter from both my GI doc and my internist to that effect. Having to do this is very painful because they have been friends for forty years. I'm now going out on my deck and do some screaming and deep breathing!(last timeI did that,the neighbors called the sheriff but now they all understand the problem...)
 
I would not knowingly go anywhere near someone with MRSA.....I do not think you are being too cautious either.....
 
Remicade and MRSA

just got the following note from my doc:

Generally you should avoid people you know to be sick since you are immunosuppressed. If this patient is sick with MRSA, then yes, I would not have this person staying with you if I were you. Casual contact is OK but I would wash hands/use sanitizer after contact. I don't think preventing this person from your home or being in contact with you is needed, just be careful.
You are less vulnerable to bacterial infections, including MRSA, than you are to viruses, fungi, and mycobacteria such as TB. However, I would still be careful.

This cleared up some questions and I hope it does so for others!
 
On Remicade since July

So, I'm in the Remicade club.. :)

Today I got my 3rd Remicade. It went o.k., just have some itching on my face + it feels really try. I had skin problems already before starting Remicade, especially on my face (it's so annoying!). I can't use cortisone, nor tacrolimus, so I treat my skin only with home remedies. Anyhow, since 4 weeks, I've also had hives on my torso area. Has anybody experienced anything similar? I really hope that Remicade won't make my skin worse in teh future... I hope it'll cure my bowels and make my skin better. But I'll see...

Also not so sure how well Remicade will agree with me otherwise. I just had a flare two days before the infusion. Let's see what will happen to it know. Before the flare I was feeling quite o.k., but still having at least diarrhea every day. The nicest thing has been, that I have not been running to the toilet anymore than 3 times day, often only 1-2. Expect the last 2 days and during my periods two weeks ago. And that I feel like eating! I'm hungry again!

How fast has Remicade kicked in with you guys?
 
Remicade starting working pretty fast on me. I think I felt better after just a day. It took a little while longer for alll the symtoms to go away, but overall, it was very quick for me. Everyone is different though.
 
@Starlight, Yes, I also started feeling better already the first day. I was in the hospital, and had been there already for 2 weeks (prednisone made me just worse, got a bacteria and antibiotics for that, which of course even worsened my symptoms again...)

So I'm sure my bowels will take time to recover. I'm feeling better today again than yesterday, much less blood and no fever, so I ques the flare I had starting before infusion is getting better. My skin does not agree so well, my face feels a bit swollen and is red, but I hope it will pass soon.

I reallyreally hope Remicade will do it for me. I have no other medication next to it, 'cause I'm so sensitive to everything... And just had the bacteria in the hospital... My GI thinks I got it because of Prednisone, but they can't be sure.

I also visited a Metology... A doctor who combines traditional and natural treatments (yes, they study both). I got a ridiculously strict diet to follow for 6 weeks and some natural medicine + vitamins. Just ordered them from the pharmacy, it's cool they have a delivery service.

And not sure if I'll start the metologist's medicaments all right now... Se said my skin problems would get worse in the beginning before they get better, and I'm not sure if I can take it right now... Not with my face. I have a some important meetings coming up and would love to look at least quite alright. I'm a freelancer, so I need to meet new people all the time. Really want to get back to work, have some nice projects...Get excited about normal life again...

Anybody else here doing any alternative treatments?
 
Remicade I hardly knew ya.

So today was supposed to be my second dose. Currently I am unable to move under my own power, every joint in my body is inflamed the doctor says it's "Serum Sickness", a delayed condition caused by the first infusion.

Alas I am no longer in the club. Hopefully I can try Humira, then next stop in surgery.
 
Mike, I'm sorry to hear that! I wish you the best luck with Humira!
I hope my rash doesn't get so bad I need to quite Remicade as well...
 
Hi, Starting on the Remi next Thursday 26 Aug looking forward to it but nervous at the same time. I'm a bit different to all on here, my crohns is not bad at all, its the abcesses and fistulas on the outside of my bum cheek and in my groin with me. There not sure if they are all down to the crohns or if some of them are some sort of inflamation of the sweat glands (which remi wont help at all) anyone got any info x x x
 
Okay I have a couple questions about Remicade. how long do infusions generally last? are you on another medication too? (my doc is deciding before I start if I should stay on imuran or not) and where are the infusions usually done? at the hostpital? oh and is it a bring your own entertainment kind of place usually?
 
crazycanuck said:
Okay I have a couple questions about Remicade. how long do infusions generally last? are you on another medication too? (my doc is deciding before I start if I should stay on imuran or not) and where are the infusions usually done? at the hostpital? oh and is it a bring your own entertainment kind of place usually?
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When I go, my appt is usually for 1pm - I am out of there around 330-4pm if all goes well.

When I started Remicade, I was on 6MP - but responded very well and went off of that after a while...I may end up going on Imuran soon though, depends on the results of my upcoming colonoscopy in Sept.

My infusions are done at the hosp where my GI practices - there used to be an infusion clinic (Just medication infusions, nothing else) - right now I go to the apherisis clinic at the same hospital.

I usually bring a book or somthing else to keep me occupied- lunch too....there are TV's where I go and they have cable -s o I usually also catch Law and Order for a couple hours. All depends on where you end up going - some places I know may not have tele available.
 
I was lucky enough to have the best nurse ever, funny and compassionate, and entertaining, so although I had my own entertainment gear with me, including a laptop with few movies, my blackberry ,books, and my fav magazine, I hardly ever got to used them since I was so captivated by the nurses stories.
 
Thank you for everyone here .Your posts were so useful when I started Remicade six months ago .

I can say I am almost 70% normal . Without my anal problems I would say 90% normal but it helped me with this a lot. Marked improvement after taking Remicade .

First infusion was OK despite of I got some side affect form allergy medication ( fuzzy , pain , headache .. )

Second one was so bad I felt so so tired . So , I decided to do Remicade without allergy med next infusion .

Every infusion after that was almost perfect without any noticed side affect .
 
I had my 7th (I think) treatment yesterday. I always get a little bit of itching for a bit plus towards the end I get sort of an itchy cough but it goes away quite soon. It is the best treatment I've ever had in the last 24 yrs for my Crohns. I actually ate wet burritos 2 nights in a row plus for lunch at work. I can eat pizza again.
The only side effect is about 5-7 days after my infusion my joints ache something terrible. This lasts about 7-10 days.
I was scared to death about starting and put it off for about 3 months before I was given a lot of good thoughts about it from members here. I am sooo glad I started it. I've only missed 3 days of work this year compared to about 25 to 30 a year before Remi. My BM have went from pencil thin to normal and only 1-2 times a day.

I love It.
 
lseibert said:
Dr. said he wants to try me on Remicade, thanks for the club.....I'll be watching what everyone says. I'm very scared. :confused2:
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Iseibert, hello fellow Michigander. Good to see someone else besides me and Chris on here.
I would like to tell you It's not as bad as you think. Of course some have reactions to it, but for the most part if you have a reaction it goes away if you have to discontinue it.

Good luck and if you need to just PM me and we can talk some more.
 
My hubby Pete has just been in hospital and had infusion of blood as blood cells were low. He has come home and has to go back on Friday for the 1st infusion of Remicade (known as Infliximab here) The doctors explained about the treatment then asked him if he wanted to wait some weeks before deciding.............is he joking!!!! Pete said he was all geared up to start anything that would improve his condition. I wonder if they would drag their feet if it was them running to the loo all the time or not been able to have a "man wee" cause follows through:ywow: So bring it on....
 
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Still on Remicade after 5 infusions - all good and improving week after week, seems this little miracle drug is the right stuff for me. Hope it will last so I will stay out of surgery.
 
Im approved!!! I am incredibly lucky for my parents medical and bc pharmacare the combo pays for it and thank god cause wouldnt be doing this otherwise. Also good im in uni still or the insurance doesnt apply. Anyway awaiting a call from my organiser either today or tomorrow hopefully and then she will have a date for me. So very excited and so very nervous.
 
I'm so happy for you, I start tomorrow morning and I'm very nervous myself. But, if it works and I can eat again and be without pain, it will be a blessing.
:goodluck::hug:
:applause:
 
Pete started his course yesterday, came out of hospital last night. This morning the sun was shining and he wanted us to go on a walk to take the dog. He used to walk miles over the Yorkshire moors. Got half way round the little farm close to where we live and had enough. It seemed a long way back as we stopped every 5 minutes but now he is tired. In his mind he wants to climb mountains but I keep telling him he will have to go careful. Men.....when will they listen?????:ylol:
:goodluck: to everyone starting new treatments. We are all here for you.
:rosette1:
 
Hello everyone,
I started my Remicade yesterday, after 3 and 1/2 long hours it think I was worth it. I began feeling a little better by late afternoon, and actually had some energy. I hope the next two weeks show steady improvement and no reaction, my fingers are crossed. I want to thank everyone that has posted to this thread, it helped calm me, going into this. I'm so glad I found this place of support.:ghug:
 
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Petes infusion took about 1 hour the rest of the time was sat around whilst nurses monitored him. As it's his 1st time it was done on the ward, I think the future ones will be done at the hospital day ward. He was a bit grumpy but that was because he felt like a pin cushion as they had been doing other tests before this. It was nice to see him home and I even sacrificed a bit of peace and quiet to have the football (soccer) match on. England at least won so that made him happy:ybiggrin:
 
Hey Deb,

I hope everything goes well for Pete. Good to hear he is home again.

All the best, :)
Dusty
 
boro deb said:
My hubby Pete has just been in hospital and had infusion of blood as blood cells were low. He has come home and has to go back on Friday for the 1st infusion of Remicade (known as Infliximab here) The doctors explained about the treatment then asked him if he wanted to wait some weeks before deciding.............is he joking!!!! Pete said he was all geared up to start anything that would improve his condition. I wonder if they would drag their feet if it was them running to the loo all the time or not been able to have a "man wee" cause follows through:ywow: So bring it on....
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Hi deb. i had a blood transfusion last week coz my iron was low. Started in the Remi/Infliximab today all went well fingers crossed!
 
I had my first Remicade infusion last Friday, and wondering if anyone had terrible stomach pain after eating? I'm still drinking ensure for morning and afternoon, but for dinner I have rice or a baked potato with eggs or peanut butter. Within 3 to 4 hours I'm in so much pain, did anyone else have this? I know it's only been 3 days, I was just wondering if this a bad side effect? Thanks for the support.....:sign0085:
 
Hi Linda, hmmmm I would contact your GI since I've never heard of this stomach pain before as a side effect of remi. I think its very important that you keep your GI informed about all changes you might feel since you have just started using remi. Sorry!
 
lseibert said:
I had my first Remicade infusion last Friday, and wondering if anyone had terrible stomach pain after eating? I'm still drinking ensure for morning and afternoon, but for dinner I have rice or a baked potato with eggs or peanut butter. Within 3 to 4 hours I'm in so much pain, did anyone else have this? I know it's only been 3 days, I was just wondering if this a bad side effect? Thanks for the support.....:sign0085:
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this is not a common side effect of the remi. 3 hours is typically the time that takes food to travel through the Ileum before entering the colon. do you feel bloated? ensure always gave me terrible bloating pain,not related to CD.
 
Thank you for the feedback about how I have been feeling since the start of Remicade. I had quite a few bad days, then a few good days and one really bad day, but over all I have been better.

I'm hesitate to call my doctor again, because he said if I couldn't eat he would have to put me in the hospital. I really don't want that, so I toughed it out, and thank goodness it seems okay.

I'm frustrated that I can't eat until the afternoon, then pain all night. I'm hoping after my next infusion on Friday things will only get better.
:thumright:
 
So I get to join a club today. I think I will be kicked out in a few weeks and forced to join the humira club. No worry to any of you since my awesome skills will no longer be in the IV league but will be in the self injectable league. I must say that all of them beat the cimzia club in the mean a$$ homecare nurse jabbing a needle in my stomache league. I really hoped infliximab would work since it didnt make me want to die after taking it like so many others did. I took it with no side effects 4 times but the doc wants a change since it hasnt done anything yet.
 
welcome to the club joe1984. like your sense of humor.
good luck with the new treatment. please keep us posted
 
Been just over a week now since my first infusion, can't belive how much better i feel. In a week on Thursday for the secound, nurse informs me the secound one is where some people have some side affects (fingers crossed) hope i'll be ok. xx
 
I hope for you that it will be good. If you havent had side effects yet then you are half way there and if you dont notice any side effects within a week of the second treatment then you are good. There is always a chance of side effects developing later but from what my doctor told me and from the research that I did before taking the drug myself the side effects usually show up within 3 weeks of starting
 
Pete seems to be copying Mummybear. He is doing really well. It has been nearly 2 weeks since 1st infusion. Looking and sounding lots better. He has had a few walks out and now able to shower without feeling extremely tired and breathless. His next one is a week tomorrow (22nd Sept).
Deb:kiss: to infliximab (Remicade) :ybatty: to other drugs tried
 
That's good Mummybear and BoroDeb, I'll be getting my second infusion on Friday. I've been getting less pain everyday and eating a little more, so it seems better. I hope we all have success with this..........

:hang:
 
Remicade Infusion Frequency

Hi everyone. I didn't see any results from a quick search within the Remicade Club to see if there were any discussions on Remicade Infusion Frequency changes. I've been struggling a great deal getting to the desired 8 week frequency for my Remicade infusion. I have been regularly flaring between weeks 6-7, so my Gastro increased my dosage from 500MG to 600 MG's hoping that I would make 8 weeks. I had my first infusion with the increased dosage three weeks ago and I subsequently flared for two consecutive weeks. No blood or mucous this week so far, but I'm having significant abdominal discomfort, gas, and bloating. I'm also having increased skin dryness and itchyness. My Gastro has decided to move me to a 6 week infusion frequency in the hopes that I will get relief. I'm curious what everyone else's infusion frequency is. For those that have had their infusion intervals reduced to less than 8 weeks, have you responded positively to the change ? Have you encountered any complications ? I'm very concerned that the skin dryness and itchyness I have been experiencing since I was increased to 600MG's will be amplified with 6 week intervals.
 
Hi all. I've been in the hospital for the past week with a terrible flare up. I'm going to ask that my GI come talk with me and hopefully order some Remicade, as nothing else is working. I'll continue to browse through the Remi club thread but I was jw if there is anything I should know about it? I really hope my GI orders it because I want to get out of here....!
 
Gurgle.....I go every 8 weeks, will be talking to my GI about adding Imuran possibly after she sees what my scope looks like next week.....I have been increasingly gurgly myself with occasional cramping.....I am on 5mg/kg currently too - and she doesn't want to increase the remicade doese if at all possible....oh - that is also the minimum dose I've been told.....

As for the dry skin - that is something you need to mention to the GI - possible side effect of the Remicade......
 
GurgleGurgle said:
I'm curious what everyone else's infusion frequency is. For those that have had their infusion intervals reduced to less than 8 weeks, have you responded positively to the change ? Have you encountered any complications ? I'm very concerned that the skin dryness and itchyness I have been experiencing since I was increased to 600MG's will be amplified with 6 week intervals.
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Hi Gurgle - I'm been on Remicade for over 2 years now and was recently increased from every 8 weeks to every 6 weeks. I found no increase in side effects. That schedule helped me for a while. Good luck!
 
Has anyone found that Remicade loses effectiveness over time? I've been on Remicade for a while and these past 6 months have proven difficult. I had my last treatment last Wednesday. 10mg/kg. By Tuesday I felt almost as bad as I did before the infusion.

Has anyone else experienced this? What's the next step?

Thanks - Amy
 
AmyWooden said:
Has anyone found that Remicade loses effectiveness over time? I've been on Remicade for a while and these past 6 months have proven difficult. I had my last treatment last Wednesday. 10mg/kg. By Tuesday I felt almost as bad as I did before the infusion.

Has anyone else experienced this? What's the next step?

Thanks - Amy
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Hi Amy, In most cases, remicade does lose its effectivness over time and that is why people are switched to humira and cimzia.
I was getting 10/mg/kg every 4 weeks before it lost its effectivness. for me the cycle was one week post infusion I was tired, two good weeks and one week pre treatment I would flare.
 
Gurge- I was getting it every 8 wks and by 6-7 weeks i was flaring as well. I was also on entocort. My GI wanted me off entocort so he started me going every 6 weeks for remi instead and it has worked great!
 
I am still going every 8 weeks. Its the only medication I am on, and I still feel fantastic! Lucky to have my life back. I have been in remission since March. I am happy to report zero side effects.
 
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Remicade Infusion Frequency

Paso/Amy/Becky........Thanks for your support ! I'm really hoping my doctor puts me on a short course of Pred so I can calm down until my next Infusion scheduled for the first week of October. I hope I'm not overreacting, but I just called my doctor because I just had an episode over lunch where I had increased cramping, sweats and was dizzy. It seem to be passing so I think I'll stick it out at work until I hear back from my doctor. I have a lovely 1.5 hour commute and I don't feel comfortable driving right now. God I hate this disease. Thanks again - Kevin
 
Anybody currently on Remicade, has been for several years ( how many ? ) and is still in remission with zero side effects ??????
Just trying to get an idea how long a lucky streak with Remi could go on.

/uli
 
REMICADE INFUSION TODAY!!!!!
YAY!!!

Lydia, I can feel the happiness through your post. I hope it keeps going for you for a really long time! Isn't it so nice to have your life back?

Uli, I've been on for almost 2 years. I am wondering how much longer it can last too, but I am hoping for a good long time!
 
LOL! They just hooked me up, and I felt a little funny. I thought my face was going numb. Then I thought my throat was closing. Then I realized I was only getting saline still. HA! It was all in my head. I think I just have dry skin.

I always ask my dose, and I always forget - so I will write it down. 400 mg.
 
My Butt Hurts said:
LOL! They just hooked me up, and I felt a little funny. I thought my face was going numb. Then I thought my throat was closing. Then I realized I was only getting saline still. HA! It was all in my head. I think I just have dry skin.

I always ask my dose, and I always forget - so I will write it down. 400 mg.
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I LOL'd. I have done that while hospitalized. Except my mouth felt furry and I felt as if I had bugs crawling all over. I think I was just tired of being hooked up 24/7 at that point. So I made them unhook me for 6 hours to get my sanity back. It was not a remicade experience but a post op one.
 
Remicade is over for me. Did not work anymore after 2 infusions.
But thank god I'm feeling good with other medications already.

Good luck, everybody!
 
Pete going for 2 nd infusion this afternoon. 1 hour 20 min to be precise:ybiggrin: not counting or anything......
Debs
 
I'm heading in today to restart my infusions. The first one may have put me in the hospital due to a delayed reaction, but my doctor thinks it's okay to give it another shot. Because they couldn't figure out what caused it, they gave me the option of trying it again. I guess we'll find out in the coming weeks.
 
I'm currently in the middle of my remicade infusion and just had an allergic reaction. They just gave me benadryl. I am now very sleepy.
 
vonfunk said:
I'm currently in the middle of my remicade infusion and just had an allergic reaction. They just gave me benadryl. I am now very sleepy.
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That's scary. What kind of reaction did you have?

I had an anaphylactic reaction once. They give me benadryl and steroids before each infusion now.

Good luck with it!
 
AmyWooden said:
That's scary. What kind of reaction did you have?

I had an anaphylactic reaction once. They give me benadryl and steroids before each infusion now.

Good luck with it!
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Oh yes, maybe more premeds will help. I take tylenol, claritin, and solu-cortef prior to each infusion. I cant even tell the difference when they start the remicade drip from the saline.
 
vonfunk said:
I'm currently in the middle of my remicade infusion and just had an allergic reaction. They just gave me benadryl. I am now very sleepy.
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Awwww, that's sucks! I'm sorry.
Did you premedicate this time? Do you know if you're going to be able to try again, or are you completely done?
 
the first time the reaction was a delayed reaction it occurred 2 weeks after the fact.

this time I went anaphylactic. Then they gave me benadryl, as soon as they started up the remicade again I started to swell up and broke out into a rash. and I gre light headed and dizzy and was unable to stand. Then I started vomiting. none of the meds helped.

I think I'm done with it.
 
vonfunk said:
the first time the reaction was a delayed reaction it occurred 2 weeks after the fact.

this time I went anaphylactic. Then they gave me benadryl, as soon as they started up the remicade again I started to swell up and broke out into a rash. and I gre light headed and dizzy and was unable to stand. Then I started vomiting. none of the meds helped.

I think I'm done with it.
Click to expand...

I'm sorry to hear this, that's scary. Maybe you can try Humira? Seems like others try that after Remicade....Good Luck and take it easy. I'll be praying you find what you need for remission.

:hug: :hang:
 
I had my first infusion of Remicade yesterday. Well, I had one infusion in 2004, and when I didn't respond, they discontinued it. Since I have no other options, my GI has decided to give Remicade a bit longer to try out. Next infusion in about two weeks!

So far, I haven't noticed anything, but it's early days. No "side" effects either, so I'm relieved about that, particularly since I have MS and I don't want Remicade to make it worse...I can't handle a huge flare of MS and trying to deal with Crohn's right now.
 
I'd like to try Humira, but I would need gov't funding for it because of the cost. And in Ontario the gov't drug assistance program hasn't approved it to give to UC patients. They think surgery is the better option.
 
Had 2nd infussion yesterday all went well fingers crossed. Nurse was talking to me about my recent blood test results, one of the readings, (ECR) i'm sure it was something to do with the inflamation levels in my blood? A "normal" reading for me should be 8 mine was 12 my last blood test pre remi the reading was 106!! No wonder i feel better......
 
Last edited:
Mummy Bear said:
Had 2nd infussion yesterday all went well fingers crossed. Nurse was talking to me about my recent blood test results, one of the readings, (ECR) i'm sure it was something to do with the inflamation levels in my blood? A "normal" reading for me should be 8 mine was 12 my last blood test pre remi the reading was 106!! No wonder i feel better......
Click to expand...

@ Mummy Bear - That is wonderful that your ESR Measuring Erythrocyte Sedimentation Rate or inflimation rate dropped tp 12! from 106. Mine pre treatment was 128 and dropped to 50 and I felt so much better.
 
Mummy Bear,

That is great news!!! I'm glad it's working for you, I had my second infusion one week ago, and this week I have been feeling better everyday!! Yeah, be great if it worked for everyone.

:hug:
 
Mummy Bear and acg101,

I want to thank you for your posts about the ESR blood test. Since I knew nothing about the test and was intrigued by your discussion, I Googled it and learned a wealth of information about the test. I was curious because I've been experiencing increasing pain lately and thought this might give one indication of how I'm doing.

My next thought was to ask my GI doc about the test, but upon reviewing my last lab results, it turns out I've already been having the test done. I'm just long overdue for a blood draw (my fault).

So, the bottom line is you've been the catalyst to get me going to have my long overdue labs completed. Again, thanks.

Dave
_________
Remicade 500 mg every 6 weeks
Multivitamin, Calcium & Vit D, Fish Oil
 
Hi all!
I guess I can join the club now. My first infusion is this Wednesday!
Does anybody know if I will be able to drive myself home? Or should somebody come with me?
 
Missy - the chances are that you will have no problem driving yourself, BUT, in some cases they need to medicate you with Benedryl which makes most people drowsy.
 
I would check and see if they plan on giving you Benadryl.....some do, mine doesn't - they just watched me very closely on the first 2 infusions to make sure I didn't have any reaction.....

This reminds me - I have to call and find out if the infusion clinic is open again...I heard a new PA was coming on board.....it is soooo much nicer there vs. the apheresis clinic......
 
Thank you everyone!
Guess it doesn't matter if I can or not-boyfriend won't let me go alone!
I have my infusion tomorrow at 9am! Kind of nervous!
 
Good luck! I know at the infusion clinic I started at, a companion could stay with you...in fact I watched someone almost pass out just from looking at the needle....
 
I'm starting remicade october 4th. Do you guys know how long they normally keep you on remicade after your symptoms are gone? As well how fast your immune system bounces back after they stop giving you remicade?
 
Cooro said:
I'm starting remicade october 4th. Do you guys know how long they normally keep you on remicade after your symptoms are gone? As well how fast your immune system bounces back after they stop giving you remicade?
Click to expand...

It is pretty much a life-long thing, if you go off, you might not be able to go back on due to the build up of antibodies.....


As far as immune system bouncing back - I would think it is over 2 months - as that is the longest period between infusions you can have.....
 
pasobuff said:
It is pretty much a life-long thing, if you go off, you might not be able to go back on due to the build up of antibodies.....


As far as immune system bouncing back - I would think it is over 2 months - as that is the longest period between infusions you can have.....
Click to expand...

How about mobility? Will I have to lower my activity level or can I still exercise to the intensities that I want?
 
Hi, I am new to the board. I have been on Remicade since October 2006 so exactly four years now. I go every 8 weeks, but have no clue what my dosage is. They just load me up and I sit there for three hours. I just had my first break-through flare up last week, so I am not sure what the plan will be since the flare happened exactly one week after my infusion. Fun stuff!
 
Hi thebeadinglady :)
Sad.....does that mean its your first flare-up while being on Remicade ? Was hoping remi would chase the flares away :-/
 
A quick question for y'all.
I don't know if I have a cold and a fever but all day today (after feeling sick-sore throat, all that fun stuff this morning) my skin is SUPER sensative. Usually this means I have had a fever. Even the softest things hurt my skin.

Even though I'm assuming it's fever related should I still contact my doctor? I'm 5 days into Remicade and nervous that I'm starting to get sick this soon.
 

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