Remicade Club Support Group

Crohn's Disease Forum

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LolaB it took me 3 infusions to before I felt any slight improvement so hopefully your BF will find as the infusions continue the symptoms will decrease.

My next infusion is 30th Dec. Welcome James!
 
I guess James and I will be Remi buddies as my next infusion is also Jan 2nd.

Lola - I have been feeling really well off the prednisone, so I really do feel like the prednisone is working for me - yay!!! I'm glad your boyfriend at least has his appetite back. Hopefully after his third infusion he will get relief with the other symptoms as well. Tell him to hang in there.

Lisa
 
Well, that's really excellent news, kronmom! So far so good, it seems, for the new Remicade Club members.

Thanks for all of the encouragement, you guys. Honestly, I think he's improving incrementally, but it's hard for him to see since he's still suffering so much. His nights are much better, for example; only one sleepless night last week, so I'm hopeful.

Happy holidays to you all and good luck to the Christmas week infusees!
 
As far as I remember (it was 4 and 1/2 years ago now) I felt the benefits about a week after my first infusion.

Like I said above, I have so many happy memories of my time on Infliximab.
I got married, had the most amazing honeymoon driving around the west coast of the U.S., we had 2 pregnancies, resulting in my beloved son. But most of all, It was the feeling of being a normal human being.

Then the Damn Seizure..... No more remission.
 
Well its been about 12 days since my first infusion. For the first 4 or 5 days, I saw not improvement, in fact my symptoms got worse and I felt worse. But, have been having great improvement starting on about day 7. No D, no cramping, no pain in my gut area at all, sore in my mouth are healing. It has not helped with the arthritis pain in my hands and hips but I am hopeful that will improve as well. I have my second infusion on December 24th.

Wishing you all happy holidays and a pain free New Years.
 
LolaB
Hey, TammySue, you and my BF will be infusion buddies on the 5th, if they can get you in. I'll keep my fingers crossed for you.


If they cant get me in I have about a 3 hour drive ahead of me.
It is well worth the drive
Thanks
 
My 3rd Remi infusion was today! All went well, yay!
I took the Claritin and Tylenol 1/2 hour before I got there - trying to cut a 1/2 hour out of the total time I need to be there, but I was still there from 1:00 - 4:30. I LOVE THE BLANKIE WARMER!!! Just last week I said to myself, "Hmm, I almost feel like I'm almost in remission." I've been off of pred for month now, and I feel a teeny bit better each day. I still have some urgency, but not as bad as it used to be, and it's usually just in the morning at home.
AND - I got daring, 2 days ago I had something spicy and some artichokes, yesterday I had a cabbage egg roll, and today buffalo chicken sub with lettuce and tomatoes. I will go back to eating carefully tomorrow, but nothing seemed to effect me. Yippee!! Good luck - everybody else on your upcoming infusions.
 
Hi everyone, I have not been on here in a couple weeks, my third infusion is scheduled for the 3rd which I am excited about, but I am nervous because I don't seem to be experiencing the relief that others are getting. My belly is still super distended and tender and I'm having a lot of pain and swelling when I eat.

And this is a weird new development, last night and the night before I woke up with pretty severe pain in my knees- the night before it was just in my left knee, tonight both knees, I could barely walk, couldn't sleep either its like radiating down my legs. I got up to do some research and it seems like it could be a number of things, it could just be the Crohns itself, could be prednisone, remicade.... I really really hope its not the remicaDe, as this is my last resort in treatment! I am a little scared about this :-(
 
My Tummy Hurts-
If it makes you feel any better, I've heard from several different sources that the Crohn's patient typically takes 3 to 4 Remi infusions to start feeling better. (RA patients seem to get relief faster) So maybe this one will do the trick! Good luck on the 3rd!!
 
Well... had the 3rd infusion today. Everything went very well... MBH I want a blankie warmer!!!! :( I was cold and I got a sheet-like blanket. This also was my very FIRST infusion in this round to actually go for exactly 3 hours because I didn't get Doris the spazoid IV nurse. I mentioned that to my nurse today... I said "I'm glad I didn't get Doris today" and she goes "did you just say what I think you did?" I go "yeah I did" and she goes "well at least YOU don't have to work with her" :eek::ylol2:

I hope I start feeling better... my last infusion wore off 2 weeks early (at week 4) and this one has to last 8 weeks. I hope it does. Oh and my insurance is saying they aren't gonna cover it... I have 6 pending medical bills with gyno visits not included and 2 are infusions.... $10,000 alone for the Remi. :ymad:
 
No WAY! You ratted out Doris?? Bahahaha!
Why not 6 weeks for the infusions now?? Why 8??
That sucks Katie that it is only lasting you 4 weeks. I forget, are you on anything else??
Maybe a little pentasa or sulfasalazine will help you now that the Remi has kicked in a little. They are for mild Crohn's so if your Crohn's is mild now cuz of the Remi ... know what I'm trying to say?
Yeah - warm blankies rule!
 
Oh its just part of my loading doses... I went 0,2,6,8 and then every 8 from now on.

I was wondering about Pentasa myself actually. I'm on nothing else... and I'm not taking my iron and vit C like I'm supposed to be. tsk tsk...
 
katiesue1506 said:
Oh its just part of my loading doses... I went 0,2,6,8 and then every 8 from now on.
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Hmm, my loading was 0, 2, 4, 8.
I am going to miss it! Not kidding. 8 weeks is a loooong time to wait.
I think your doc can recommend 6 weeks.
You might want to be on something else in case you Remi fails then at least you have something else in your body.
I am on pentasa (and imuran) it's very mild I guess.
 
I had my remicade yesterday morning and the nurse that put it up ran it at 145mls/hour instead of 125mls/hour so it would complete in a 2hr timespan. This meant I was finished 25mins early. Felt fine and didnt complain but her colleague was puzzled why she put it at that rate and I had no idea either lol

I went to do some shopping in a big store on the way home and then it hit me! Came over all clammy and hot, felt really woozy and drained and just wanted to lie down there and then except I couldnt as I was in the pay queue that stretched a mile like the rest of them due to the sales! Managed to get home and rest but not sleep. Have had 3.5hrs sleep overnight and feeling on the rough side. Just hoping it settles in the next couple of days and I think its down to the infusion speed as havent had this so bad before post infusion.

So its something I will keep an eye doesnt happen again in future - funny that!!

Katiesue,

I have been on 6wkly infusions for a year now and find I can cope better even though I still deteriorate 10-14 days pre the next one. So like MBH says might be worth trying for? Hope you get some relief soon.. ((hugs))
 
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greenie here

I have been taking Remi since June'ish of this year. I ended up getting something called peripheral arthritis which is a party in and of itself... :-(. Doc started me on Remi and the swelling stopped within a few days. I have tried all of the "lite" drugs like pentasa and asocal with no luck. I graduated up to steroids a few years ago and had no luck there either. After the arthritis started I ended up on Norco (Vicodin) 7.5/325. I was up to about 12 a day before the remicade. Now it is cold turkey for the narcs and a "test" run with Imuran. So far so good with remi. It hasn't fixed everything but is for sure helping. I am on 10ml/kg (?) every 8 weeks. Next run is first week of Feb.
 
Hey Rob - welcome to the Remi club and our forum too!!

Soupdragon - I can't remember how long you have been on Remi. I just finished my 3 loading doses, and the nurse said that the next one would drip faster too. Dunno why - I guess maybe they ae trying to do it slow in the beginning to check for a reaction? But it seems like the reactions can happen ANY time - not just when a person first starts talking the infusions. Hmmm... I don't know.
I find I get hot in stores a lot, even without the remi. I have to have an icy drink at the grocery store or I feel like I'm gonna pass out. Sometimes I am walking around in a t-shirt there while everyone else has their winter coats on, and I am always freezing at work and at home. Something about stores gets me all hot.
 
MBH,

Yep I agree with you about the T-shirts! I have been on Remi since Spring 07 and its always been at the same rate and over 2hrs. Her colleague just thinks she was thinking of a different drug infusion or something else and just put in the wrong rate.

I felt ok during it but it just seemed to have an impact on me later as I said. We will see eh?

How are you doing now after your 3 loading doses? I found it took the 3 before I started to feel any better and it has definately made a difference to me overall in so many ways.

Hope things improve for you.
 
I've got an appointment on the 7th to have a 'chat' about remicade. Do your veins start to suffer? Or is there a big enough gap between infusions?
 
my remicade experience

I was on Remi until October of this year. In April the gi took away my immuran, which made my Remi only last 4 weeks instead of 8. Worked pretty darn good till April and was on since 2004. Since then I tried a brief three shot deal of Cimzia, did not last. Now the gi wants me to enroll in a study of a drug that is also made by Centacor(remicade) that starts with one infusion and then goes to shots from the second treatment on. I am interested but since I have not had the cd in check since April I would almost rather go back to remi and immuran, even though the GI says there is an increased risk of lymphoma, which is a risk with all these things.
 
I have been on it since 2004. I don't particularly like having the mouse-DNA pumped into my body but it has helped me a lot & desperate times call for desperate measures.
 
anyone had GREAT luck with narcs? I have been taking Norco (Vicodin) for the last year now. It works awesome. I was up to about 12 a day but now that the remicade is kicking in, i can get by with 3'ish. Doc's of course are freaking out and would rather i took the cancer meds then the crack head ones.
 
Sorry Rob, can't help you there, as I haven't had to use narcotics yet for my pain. Glad to see that the Remicade is helping you, though!

Anyone have nausea with Remicade? I've had it off and on (very occasionally - maybe 1-2 times a month) since starting Imuran in November of 2007, but since my third Remicade infusion (last Friday), I'm now having it about 3-4 times a day. No vomiting so far. Is this normal with Remi, or is it maybe the combination of Remi with Imuran? I'm due to go off the Imuran after my next infusion (February 27th).

Lisa
 
WOW. 12 a day?!
I am glad you are feeling better & getting off the vicodin.
It is nasty stuff.

barker.rob said:
anyone had GREAT luck with narcs? I have been taking Norco (Vicodin) for the last year now. It works awesome. I was up to about 12 a day but now that the remicade is kicking in, i can get by with 3'ish. Doc's of course are freaking out and would rather i took the cancer meds then the crack head ones.
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Never had nausea from Remicade. But my CD makes me nauseous quite a bit.

kromom1 said:
Sorry Rob, can't help you there, as I haven't had to use narcotics yet for my pain. Glad to see that the Remicade is helping you, though!

Anyone have nausea with Remicade? I've had it off and on (very occasionally - maybe 1-2 times a month) since starting Imuran in November of 2007, but since my third Remicade infusion (last Friday), I'm now having it about 3-4 times a day. No vomiting so far. Is this normal with Remi, or is it maybe the combination of Remi with Imuran? I'm due to go off the Imuran after my next infusion (February 27th).

Lisa
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I start my Remicade treatment in about 2 hours actually for the first time. I am so incredibly nervous and I can't seem to find any encouraging information about it anywhere. It seems more people have side effects (that sound uncomfortable, painful or displeasing) then not.

Wish me luck?
-___-
 
Erica - I was nervous before my first, too. But really there was nothing to it. I've had 3 now, and each has been easy with no side effects whatsoever, and I am feeling a lot better since beginning the therapy. Of course everyone is different, but I hope your experience will be as good as mine has been! I wish I had started Remi sooner.

Welcome to the forum and let us know how it goes, okay?

Lisa
 
Luck.....you don't need luck, just a good book. :D The worst thing that ever happened to me was getting really bored & I have been on it for nearly 5 years now. I now take my laptop cuz the hospital I go to now has wifi. :)

I usually fall asleep anyway, cuz of the benadryl.

CHEERS!

ericacat said:
I start my Remicade treatment in about 2 hours actually for the first time. I am so incredibly nervous and I can't seem to find any encouraging information about it anywhere. It seems more people have side effects (that sound uncomfortable, painful or displeasing) then not.

Wish me luck?
-___-
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ericacat said:
I start my Remicade treatment in about 2 hours actually for the first time. I am so incredibly nervous and I can't seem to find any encouraging information about it anywhere. It seems more people have side effects (that sound uncomfortable, painful or displeasing) then not.

Wish me luck?
-___-
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Good luck Erica! Welcome to the forum, and let us know how it goes!!
 
How is remicade working for everyone in the long run? I have recived remicade twice, and have a third treatment planned for feb 02.

So far i have responded to it, and there have been no side-effects. It keeps me pain free thank god, however it doesn't do anything for my fatigue! And it does not increase my apetite either. I still can't return to a normal life even with remicade, wich i see as the strongest possible chemical they can give you. I dont know what to do next..

I am also very scared that i will develop cancer in a few years time. I've read the risk of cancer is high when you recive remicade. Does remicade remove ALL of your symptoms? I hope it will be more effective for me down the line. I'm still new to it, having only recived two treatments. But im sure that i felt better the first time i recived remicade than i did the second time.
 
ChronsSUCKS said:
How is remicade working for everyone in the long run? I have recived remicade twice, and have a third treatment planned for feb 02.
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Hi CrohnsSUCKS - I have heard that the Remi works quickly for the RA patients, but usually kicks in at the 3rd or 4th infusion for Crohn's patients. I had my 3rd at the end of December, and I feel really really good. I haven't felt this good in quite a while. It just got a little better every day, and this week I was like "Wow! I feel GREAT!" My problem is that everything I have taken so far peters out after a while. Maybe this will be the one that works for a good long time.
So - with your 3rd one coming up, it might kick in for you too!
Are you on anything else? I was on Prednisone still for the first infusion, and am on Imuran and Pentasa too.
Have you had your blood levels checked? Maybe the fatigue is due to a deficiency.
Good luck, keep us updated, and welcome to the forum!!
 
I'm glad to hear that you feel good! Good health is one of the best things in life, so enjoy it! And thank you, i'm so happy i found this site!

I am also on Pentasa and have been for many years. The first treatment i recived was Prednisone, but it didn't help me with the crohns. Although i felt very good while my dose was still high. I started with 50mg per day and felt like a king until recently. I had much energy to live a normal life, working out and doing everything i wanted. But now i have tapered the prednisone down to 15 mg, and the fatigue is still there like it was before. Seems i had only forgotten about it.

I also take iron, calcium, folic acid and vitamin B supplements. Did you also feel fatigued constantly before the remicade?
 
i used to relapse a bit before each infusion, so my gi increased the dosage and moved the infusions to every 6 weeks. i think it's pretty common to feel tired/sick again before each one. if it continues maybe you could talk with your doc and adjust your dosage and/or schedule.
 
I was on it for about a year or so. I switched to Humira so I guess I'm not really in the club but I'll help with any questions. ^_^
 
I was on Remicade for 10 years total Remission along with 6mp and then grew immune to it .
 
Zman said:
I was on Remicade for 10 years total Remission along with 6mp and then grew immune to it .
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Same here.Took a break for 6 months then went back on it.
So far so good.... Next one Feb 10
 
Remicade doesn't seem to work for me. I've gotten worse and worse the past week, and i'm pretty sure any beneficial effect was caused partly by Prednisone. I thought my first Remicade treatment was a miracle medicine, but at the same time i was on 35mg of prednisone daily.

Tammy Sue you stopped using Rem for 6 months? How did you treat your illness during this time?
 
ChronsSucks, hang in there a bit longer. My BF had a similar experience: after the first treatment he had 9 great days and then went downhill. After the second he didn't really see any improvement at all, and in fact was in pretty bad shape until just a couple of days before the third.

He had his 3rd treatment Jan 5, and wow, the difference is unbelievable! He's eating, sleeping, and has gained about 8 pounds in 3 weeks.

Honestly, after the second treatment, i was trying to be all positive and supportive, but i was really scared that it wasn't going to work for him. Now, i really do think it's a miracle drug! [um, even though he had a bad morning and is currently an anxious mess that the inflammation is coming back, but that's another story. ]

You guys? For those of you fairly early into the treatment, do you still have occasional bad days? Like mini-flareups where you have some symptoms but they go away within a day or a half-day?
 
Yeah - like Lola said, hang in there CrohnsSucks. Your 3rd infusion is coming up and I have heard that full effect can take until the 3rd or 4th treatment.

Lola - yay for your bf feeling better!
I still have 4 weeks until my 4th infusion, and I am waiting for it to wear off before then, like some people say it does.
The only bad days that I have had recently have all seemed food related, so I will cross my fingers!
(Last night was not so good - hoping I just overdid it...)

Good luck Feb 2nd CrohnsSucks!
 
Hi Lola,
Im on Remicade and have mini 2 hour flares about once a week but they seem to come and go without too much fuss. When they come along I put on the air-con at work as my temperatue rises, loosen my belt a bit (as my stomach swells up a lot whilst flaring!) and I drink plenty of water. Seems to work for me at the moment!
Also had a bad flare for a day or so after eating some Goat's cheese at a xmas work meal (first time I ate it and without doubt the last!).
 
ChronsSUCKS said:
Remicade doesn't seem to work for me. I've gotten worse and worse the past week, and i'm pretty sure any beneficial effect was caused partly by Prednisone. I thought my first Remicade treatment was a miracle medicine, but at the same time i was on 35mg of prednisone daily.

Tammy Sue you stopped using Rem for 6 months? How did you treat your illness during this time?
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I tried Humria and needless to say I had a bad bad reaction so my
GI put me back on the remi
 
thanks for the supportiveness! I've met with my doctor recently and it turns out my blood tests are actually better. So i'm getting better despite feeling worse, and its comforting to know. When you lower prednisone, its common to feel worse as the dose gets lower than 20 mg (someting they didnt say before wich cost me lots of mental problems now)

He thought it was good to comfortably double my remicade dose because it was very low to begin with. And while i'm still lowering prednisone, ive gone back on Entocort. And it has helped me slightly for fatigue and at least reduced pain lightly to be on both at once currently. I am also starting back on Imurel sometime around my next rem-treatment.

Any sideeffects with higher Remicade dosage that people know of? I'm thinking its a possibility to give low-dose Remicade another chance if its true like you say, that it needs third or fourth treatment to start kicking in. My face has a bit more acne since i started remicade (i normally dont have any acne at all). Also i can get very hot occasionaly and need to strip off some clothes. If the remicade doesnt work next time we have considered Humira injections wich he said are a good alternative.

By the way, what is this im reading arund the board about Remicade being a terrble drug and should be last alternative? I dont personally have much sideeffects or problems with it other than the tolorance that will come later on.

I want to get well FAST so that i can continue with my life before its been too long to recognize it. Everything i do is dependent on top health (high level athletics) and i want to make the right choices to make me strong quickly.
 
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ChronsSUCKS said:
thanks for the supportiveness! I've met with my doctor recently and it turns out my blood tests are actually better. So i'm getting better despite feeling worse, and its comforting to know. When you lower prednisone, its common to feel worse as the dose gets lower than 20 mg (someting they didnt say before wich cost me lots of mental problems now)

He thought it was good to comfortably double my remicade dose because it was very low to begin with. And while i'm still lowering prednisone, ive gone back on Entocort. And it has helped me slightly for fatigue and at least reduced pain lightly to be on both at once currently. I am also starting back on Imurel sometime around my next rem-treatment.

Any sideeffects with higher Remicade dosage that people know of? I'm thinking its a possibility to give low-dose Remicade another chance if its true like you say, that it needs third or fourth treatment to start kicking in. My face has a bit more acne since i started remicade (i normally dont have any acne at all). Also i can get very hot occasionaly and need to strip off some clothes. If the remicade doesnt work next time we have considered Humira injections wich he said are a good alternative.

By the way, what is this im reading arund the board about Remicade being a terrble drug and should be last alternative? I dont personally have much sideeffects or problems with it other than the tolorance that will come later on.

I want to get well FAST so that i can continue with my life before its been too long to recognize it. Everything i do is dependent on top health (high level athletics) and i want to make the right choices to make me strong quickly.
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Well ive been on Remicaide since 96 and was 10mg/kg every 6 weeks for
about the last 2yrs up until 2months ago! I hope to get back on it ASAP....

As far as WANTING to get well FAST, well, we all want that, but there is no sure fire way as im sure you know, so with that said, Remicaide usually does work pretty quick and does do its job usually well, but if your a non responder then maybe Humaira is something to look into.... Just eat right, dont allow yourself to get stressed, keep active, stay up beat and push your dr to get ish done!

GL!!!!
 
You should start to feel the effects by the 3 or 4th one for sure,
My GI upped or doubled my dose as well 10mg or ml = 600ml
thats 6 vials for me at 125lbs every 5 weeks now instead of 6,
I have been on this drug since it first came out (Around 10 yrs. ago)
cant remember then went off it for about 6-7 month to try humria
because my body just took a tolerance to remi and stopped working
especially on the draining of my fistulas.
They are pretty much dry when I get the infusion then within 3-4 weeks
the whole draining process starts to kick in and the joint muscle bone aches etc...

hang in there
 
Good luck, CrohnsSucks!!

Welcome to the forum, DG!

Lola - I'm so glad your BF is doing better! I had my third infusion January 2, but I still have occasional symptoms, too, and so far it's not doing much for my bone and joint pain. In fact the pain in my fingers and feet is quite a bit worse. The aching in my knees does seem better, though. No diarrhea at all but still occasional gut pain. I'm hoping after the fourth infusion (February 27), everything else will improve. Hopefully that will happen for your BF as well! Good luck!

Lisa
 
TammySue62 said:
I have been on this drug since it first came out (Around 10 yrs. ago)
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Tammy Yes i took it as a "test drug" in like 95 or 96 and i think was in full force by 97!

Kromom1: Thank You Thank You!!!
 
Hi Lom - thanks for weighing in on the mini-flares...good to know that it's kinda normal at this stage. Hope the remi keeps doing the trick for you.

MBH & Kromom - really really glad to know you guys are doing well and I feel really hopeful that it's gonna work out for you! I keep hearing that the 4th infusion is the one that really kicks it into gear, so hang in there - KM, the 27th is my b'day, so that's gotta mean something really super dooper positive, right???! :)

Me, I'm in a funkin funk. Unfortunately BF's mini-flare became a full-blown affair, and he's just miserable: losing weight, not sleeping - and god, when he does drift off to sleep, he makes these pitiful whimpering noises! It's totally heartbreaking.

He's off at the rheumotologist's this morning because now they think that the joint pain he's been having is arthritis related. He's a professional guitarist, so if this develops in his hands, i cannot imagine how he's ever going to accept it. He's talking about 'ending it all' again, and man, i just don't know what to do anymore. I stay positive in front of him but my "it's gonna pass! it can't stay like this forever! think about this summer and how awesome you're gonna feel and all the great things we're going to do!" song and dance routine is starting to feel really lame, even to me. Arrrrghhhhh.

My heart goes out to all you guys. It sucks. it really really really f'en sucks.
 
Lola - Your BF is so lucky to have you for support. I just feel awful for you both that he is having such a hard time. I am praying for you both that the Remicade will kick in soon for him and do the trick. Hang in there!

Lisa
 
Hey guys... I'm not doing so well... called the doc and he has doubled my dose (600mg), I get it Sunday instead of the 21st. I'm a little nervous, but hopefully it goes well.
 
Sorry to hear you aren't doing well, Katiesue. I sure hope the increase in dose dose the trick for you. Good luck!

Lisa
 
Awww, that sucks KatieSue. Maybe this will do the trick. I'm sorry you are feeling crappy.
Why are you nervous, cuz it's a higher dose? People get that dose all the time, right? You'll be fine!
 
No need to be nervous. I am at 600 mg and have noticed a big improvement.
I always take benadryl also when I get home.

Hope your feeling better soon.
Goodluck
 
Sorry to hear that, Katiesue! Hang in there and hopefully this dose will really help you feel better.

BF will probably be getting his 4th infusion 2 weeks early, too. He's really been miserable for about 12 days now. Man.
 
I get my next infusion on Feb 8th and boy I cant wait.
About a wek or so before my next infusion my body starts
to go wacko. The pain is more intense,my fistulas double in pain
and way more draing my muscles and joints ache bigtime.
In general my hole body aches and I feel like crap.I count the
days until my next infusion then I feel somewhat good for the next
3-4 weeks then I start the whole process again.I am still trying
to avoid surgery.
 
I have been on it since Nov 01 when i first diagnosed, I get it at every 8 weeks, Usually the next day i feel better, or the day after that. if it wasn't for remicade i would be in big trouble....
 
katiesue1506 said:
Hey guys... I'm not doing so well... called the doc and he has doubled my dose (600mg), I get it Sunday instead of the 21st. I'm a little nervous, but hopefully it goes well.
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You can't get it moved up any sooner? usually (at least with my infusion network) if you call your doctor and tell you you are not doing good at all, if its within a week they will schedule an emergency infusion for you. My doctors office did that for me in jan I was scheduled to get mine on the 16 and had them move it up to the 7th because i was standing in my brothers wedding on the 10 and i was to the point of checking myself into the hospital, by the 9th i was GOLDEN. Just an idea. Hope you get to feeling better Katiesue
 
Well im back in the club! Had a "emergency" treatment last thurs.

Katie- Just to let you know Im at 800mg every 6weeks!
 
I'm new to the IV League

Hey y'all! I received my first treatment a week ago and I feeeel :) . I was scared but came thru just fine. Hope everyone else is ok!

Steph
 
Well...ahhhghhh...BF's back in the hospital. Had a colonoscopy this morning and the gastro isn't very optimistic. He doesn't think the remicade is going to work for him. They aren't sure if he's a good candidate for surgery, but his team is meeting later to try to come up with some options. This is just truly awful. I feel totally defeated.

Hope you guys are all holding up well as can be expected. I'll keep on hoping that remicade is the magic solution for you all!
 
Welcome back to the club DGS. Hope it works for ya'.

Lola - I'm so sorry about your bf. His 3rd treatment worked well at first right? Maybe he just needs them closer together, or maybe a higher dosage like Katie? Check into th higher dosage. Especially cuz it WAS working for a bit. Good luck.

Hey Steph - welcome to the forum! You might want to introduce yourself in the "My Story" section, so you will get a proper welcome. You could get buried in this thread, and no one will know that you are here.
 
TammySue62 said:
I get my next infusion on Feb 8th and boy I cant wait.
About a wek or so before my next infusion my body starts
to go wacko. The pain is more intense,my fistulas double in pain
and way more draing my muscles and joints ache bigtime.
In general my hole body aches and I feel like crap.I count the
days until my next infusion then I feel somewhat good for the next
3-4 weeks then I start the whole process again.I am still trying
to avoid surgery.
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That's how Infliximab was for me Tammy.
It was the best year and half I've had.
 
Starting Remicade today

Hi Folks,
First time I've joined a forum. I start the Remicade today. Thanks for your thoughts on it. But since I left the hospital and all the drama of the flare up I have been well with no problems. Sounds like many of you are in pain. Am I right?
 
Hi tpacker - welcome to the forum!
I am lucky in that I don't usually have pain, even with a terrible flare. Everyone's symptoms are different for Crohn's. Mine are mainly too much diarrhea and urgency when I am flaring.

Remi question for you guys -
After the 3rd infusion, they give you the next one at a faster rate - is this correct?? I think they do the first ones slower in case of a reaction? Can you ask to have ALL of them given at the same drip rate?? (I know that they do speed it up in the middle) Would this help keep a reaction from happening, or not really?
KatieSue - I know you are nervous about your new higher dosage, maybe they will keep it at the slow rate?
 
They are not suppose to change the drip rate. I have noticed
(threw my experiences)if the drip starts off at a high rate and
continues at that rate you will have a reaction. This happened
to me about 3 times thats when I told the nurse to slow or stop the
infusion to regain my air supply.

My next infusion is Feb 8th cant wait feels like HELL
 
Through out all my years of getting this drug, its always started at a slow drip rate and raps up through out time to get to its "final" rate. I start at i belive 10ml per hr and by the time(last hr or so) im at 250ml for the rest of the bag. Ive always topped out at 250ml per hr but this last time it took 3hrs+ for infusion due to REstarting Remicade.

As far as i know if it takes longer or due it at a slow rate they want to lessen chance of reaction, as well as your body responding to it. Thats what ive always been told.

As far as MBH ?, i cant really remember how they did it with mine, but i do remember they ended up bumping up the rate after my first few infusions.

Hope some of that makes sence? Sorry im in a bit of pain.......
 
i had my 10th infusion yesterday. it took FORVER (again...). and i had no internet, sadly. kind of cool story though: the nurse put the IV in, but before she could attach a vial for labs, blood started streaming down my arm. i don't think i've ever bled so much and so quickly before. it was really cool! it left a huge stain on the pillow, which was not so cool.

my infusion rate is always the same. it starts out slowly and gradually speeds up over the course of what is *supposed* to be about 2 hours. sometimes it takes longer if they decide to slow it down because my pulse/blood pressure are too low. i think they start out slowly and then speed up to reduce the possibility of a reaction.
 
katiesue- when i was on remi and started not doing so well they bumped me up to 800mg every 8 weeks and no reactions happened or anything. i was little too, 14 yrs old, 90ish lbs and my body did fine with the high dose.

hopefully thats somewhat reassuring?

good luck to all of you remi clubbers! i hope that youre all doing well with it
 
Well everything went great, no reactions (gave me 650 mg). I had good ol Doris again today... but she wasn't as scatter-brained. I think its because she has a new bf... she said it was "official" today. :) She did, however, forget my blood pressure cuff. She also taped my IV to my arm FOUR times, over the hairy part. I about cried when she ripped it off.

Hopefully it starts kicking in before my lunch decides to "evacuate"... ate a taco salad. :tongue:
 
See? All that worry for nothing! I'm glad it went well for you - hopefully it will kick in right away.
And omg - how did you get Doris again?!?? I thought you purposely went on her days off??!
 
Well this time was sorta an emergency... so I didn't get to pick. Plus I swear she sees my name on the books and asks to work that day.
 
katiesue1506 said:
Well everything went great, no reactions (gave me 650 mg). I had good ol Doris again today... but she wasn't as scatter-brained. I think its because she has a new bf... she said it was "official" today. :) She did, however, forget my blood pressure cuff. She also taped my IV to my arm FOUR times, over the hairy part. I about cried when she ripped it off.

Hopefully it starts kicking in before my lunch decides to "evacuate"... ate a taco salad. :tongue:
Click to expand...

WooHoo! Glad to hear it went off without a hitch Katie!

I have "my nurses" lol They all know me and i only let 2 touch me cause they are on the ball and know there ish. I cant stand nurses or Drs that are like that(scatterbrained/ignorant/disrespectful/dont listen/ETC) Not that im demanding or anything, but been there done that and want it done right the first time. I.E. Me telling the nurse to put a pad under my arm so blood dont go every were and she dont listen and then I end up wearing BLOOD SOAKED pants as their cleaning the bedding, floor etc! :ymad:

Man that just shows how different Crohns is with ppl! I cant even think of eatting a Salad let alone a Taco Salad, even on my best days! Hope it was wonderful!!!
 
Good to hear katie. That's good to know that you can go from Humira to Remicade as I'd heard of people going from Remicade to Humira but not the other way around. I may end up going there also as Humira seems to be running its course with me.
 
Hey Sojourn - I've gone from Humira to Remicade, too, and it seems to be working pretty well, though I've only had 3 infusions so far.

Katiesue - Take care of yourself with that cold. It's true it will probably take you longer to recover due to being on the Remicade. I've been sick now for 10 days with fever, chills, cough, headache, sore throat, etc. I'm on Imuran with the Remicade, so I guess that makes it worse. Make sure you get plenty of rest and fluids!

Lisa
 
Oh yes... I'm chugging the OJ, trying to keep vitamin C in me as best I can. Its really mild right now, occasional coughing, stuffy/runny nose, and post nasal drip

Sojourn- Yeah I actually went from Remicade (summer '07) to Humira (fall '07), and then back to Remicade (Nov. '08) within a year and a half. I was nervous about reintroducing Remicade, but it went just fine. I had 3 regular infusions and my fourth was bumped up to 600mg (or 650mg? can't remember) and that also went fine. I'm just riding the Remi wave right now.
 
Your kids get to go to sleepovers on school nights?! Parents are softies nowadays...


Glad it went well. I so would've had your back though... and definitely would have went with the jeans if you hadn't told me so. I prolly would've picked the slippers too.
 
All of you seem very content with Remicade but may I ask, are any of you scared about the risks? I have mentioned in other threads that my doctor would like to put me on Remicade pending my test results in April but I'm not sure about if because A) I'm not sure my current condition really warrants that exteme of treatment and B) I'm scared because right now I know what I am dealing with and the worst that can happen but with risks you just don't know. Did anyone else have these same fears?
 
i don't think there is much to fear from remicade... maybe the risk of an allergic reaction, but that's why they give you benadryl beforehand and there will be nurses monitoring you who will help if you have a reaction. the other big thing would be the increased rick of cancer, but these days, pretty much everything will cause cancer, so i think remi is worth the risk.

remicade has been my miracle drug, so i think the fact that it's given me my health back outweighs the risks.
 
Collette said:
I'm not sure my current condition really warrants that exteme of treatment
Click to expand...
I was to the point where I had lost so much weight and was not going to come out of my flare without strong medication. I started with Humira (which quit) then Remicade. I didn't have any other choice. I now have my life back.
If you aren't sure if you need it, then maybe you don't. I knew for SURE that I needed something powerful. Then again, if you don't control your symptoms now, they will almost certainly get worse.
 
Started my remicade treatments Jan 09
going in for my third treatment on March 12th and waiting to see how things go... :)

I love getting my infusion, but we'll see if I develop any of these reactions after the third one...

Starting to feel a little icky..it must be remicade time. :p
 
I know I really should trust my doctor. He even suggested to me and my husband that we should feel free to ask for a second opinion so he must feel confident with his decision to use the Remicade. I was fine with the idea but my husband freaked out. All I know is that the entocort is doing NOTHING for me and I am miserable. I will know more April 3rd. Thanks everyone!
 
Well, I'm going in tomorrow for my first infusion.
Wish me luck! :ybatty:
I'm sure all this worrying is for nothing...
 
Welcome to the club MINI... its really nothing to worry about. If you start having a reaction, they are there to slow down the infusion and give other drugs if need-be. Hopefully it does the trick for you. I certainly can be a miracle drug for some. Good Luck... take a blanket, I freeze during mine.
 
Mini's in da cluuuuub! WooooOOOOOT!
You'll be fine, Mini. Bring a snack. Haha - two hours?? Someone lied to you!
Good luck! Post when you get back!!
 
LOL great. I see a lot of dumb people :ylol2:

yup, the nurse told me 2 hours.
Fortunately, my mother has demanded to come with me,
despite it being her birthday (crappy way to spend it I say)
but she can grab me some food if it takes longer.
I go in at 11am.

But I will be packing my usual 'hospital stay' kit regardless.
Movies, ipod, books, my word puzzles, and a blanky :)
God, I've used the hospital kit waaayy too much already. :ybatty:
 
Hope it went well for you Mini!

Not trying to scare anyone or anything, but I am now out of the club after a lupus-type reaction to the Remicade. I just spent 13 days in the hospital (9 days intubated in the ICU) and have 24 staples in my chest after a "pericardial window" surgery to drain the fluid from my heart and 2 chest tubes to drain my lungs. They gave me about every known antibiotic and antifungal and then massive doses of steroids, and now I'm back on oral prednisone and injecting insulin 4 times a day (and Plaquenil for the lupus). I'm not sure where we are going from here as far as the Crohn's. I am SOOOO disappointed because I really thought the Remicade was working for me.
 
Holy crap! That IS totally scary. Did it happen during the infusion, or was it at home? I don't get it.
I'm really sorry that happened to you Kromom, I hope you are feeling better soon.
 
MINI Cooper said:
um....now I am starting to regret starting Remicade.
Perhaps I should stay out of here for a while.
Click to expand...

Don't regret starting Remicade, it works wonderfully for many people and hopefully it will put you in remission for a very long time. Unfortunately like most meds, some people have reactions and can't take it. Good luck.
 

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