Remicade question..please help..

[xrayzerase]

remicade question..please help..

hi-i know i keep asking the same thing--but still seems so confusing.
had my first remicade jan 25 (thursday) and have next one this thursday the 8th.
i was just wondering from anyone who takes remicade here:
how long did it take to help you?
were you on other meds at the same time-or not?
did you almost seem to get sicker in some ways?
ever since i starting tapering from entocort-oh-like 4 -or 3 weeks ago-hard to recall anymore--things went bad. 3 to 2 pills wasn't horrible-but i did notice i didn't feel as well (though-even on entocort-3 pills for 3 months--since dx-but when on entorcort-and pentasa-8 500mg day--i never went into remission-but did feel a bit better) but on 2 pills entocort-i got a bit worse. then-on one pill (after 3 weeks on 2) i went way downhill. cramps burning in colon (anal and rectal-and even deeper) and some throbbing pain on lower right side of abdomen (where terminal ileum is i guess--that is where my ulcers-or whatever-are)
anyway-also-low grade fever started again and extreme fatigue) i worried about anemia-but more about B12 deficiency) he put me right back on 3 pills entocort and i went to see him. he took tons of bloodwork. found my c-reactive protein was high-so knew it meant inflammation-flare not gone --and that i in fact don't have mild-moderate --but severe crohn's--i guess until on meds -and watching the agressiveness of inflammation-or if meds work or not-i guess that tells stage?--in i don't know...i am no dr)
but-he said it is time for either 6mp or remicade. he decided to go straight for remicade.
so a bit more than a week ago-i went in for the 2 hour infusion. went ok. i felt sick-but that is the crohns. i was actually hoping that in a few days i would be feeling better-like many say remicade helps in a few days.
nope. still sick.
still VERY tired. still have low grade fever--actually-i wonder about my thermometer-geting a new one. sometimes my temp is low-98.0 but mostly it is between 99.1-99.6 (my norm is 98.6-like most poeple i guess--and when first on entocort-it did for awhile get back to 98.6 for a good 2 months or more. -but since the taper to one pill-the dumb fever wont go away. and i feel it--the chills and feeling hot at the same time--feeling fluish-all that junk.
but-the cramps and burning--i take vicodin. he (dr) worries about the addictive thing--but "ef" it. i can not function without it. i tried just tylenol today-and ouldn't get through. and i have felt pain in past (before dx) and never took meds--so i am able to deal with a bit of pain-even chronic. i had that dumb chronic heartburn (very bad) for months (which turned out to not be acid reflux-but nerve-related-and the ativan .5 mg 3x day totally got rid of it. no heartburn for months now-since ativan. none of my dr's are concerned about the addictive quality of ativan-and i am releived that the heartburn is totally gone. it helps. and i thank the ativan. and this other pill: librax-(3xday) for cramps.
vicodin: taking 3-4 a day 7.5 mg.
without it i can't even sleep-feel too uncomfortable to even rest. i do get spotty sleep-but-no good. so-i am grateful for the pain med--and will fight for it if i have to.
but--i just hope the remicade kicks in soon.
my dr is hopeful it will work if not by 2nd infusion-then by the 3rd. i think he is upping the dose this week.
if it doesn't work-i think he meantioned adding 6mp.
i know prednisone may also be somewhere on the table if nothing else works--which i am thankful he is avoiding just now.
i am on the 3 pills (9mg) entocort-8 500 pentasa-ativan librax prozac and concerta. and vicodin. and ambien.
whatever
i just feel i am only getting sicker and sicker.
he said it is just i am in flare-and it won't go into remission easily.
i am still hopeful about the remicade--but-haven't been able to live in so long.
i know you all know what this is like.
it sucks.
i had to go out to get ---neds (ofcourse) and go to where i work to water plants and check in on things. and then to get my cat her food.
in just less than 3 hours out-on tylenol-no vicodin (casue i had to drive)-i came home feeling very very ill. fever went up. i was literally shaking...and i get these dizzy spells.
i also worry about how my endometriosis plays a role--it is also considered an autoimmune thing. i had blood to check hormones and thyroid etc.
who knows.
i just worry i may end up in hospital--that iwon't be able to get in remission without IV treatment--is that what happens?
sorry-
just-feeling sicker-and it's confusing.
only good:
no diahrrea--but still --more stools than "normal"--and yellow in color.
i still don't eat much-rice pudding and potatos or crackers-sometimes with cheese-i can tolerate. but mostly rely on ensure.
i take all the supplements i know of.
so
again:
anyone who has been on remicade--please-let me know if you also had trouble-or if it took a long time for it to work-or if you needed more than entocort and pentasa to go with it..
thanks for any replies
sorry so long
just-feeling so so awful for so long now
i am not so much depressed as i am just-
simple:
like all on here:
want my life back
but -at the same time-too sick to give a crap (pun intended)
please-ant help..please let me know...
andrea.

 

[TammySue62]

Remicade

Hi
Why dont you try being happy for a change instead of always being depressed. I am sure that I speak for other Crohns people on this forum. Of course we all have are depressed moments. It seems that every time I read one of your posts it is always negative.Try being positive for a change. it will probably make you fell better too. As for the Remicade yes Ive been getting infusions for years,since it became available in Ontario. This too also takes time. So just sit back and breathe.

 

[ruthymg]

I have to agree with Tammy I'm afraid. Beating yourself up all the time, definately won't help. When I was first diagnosed, I was really really sick for over 12 months and I became depressed with feelimng so crappy all the time. My GI said to "don't let crohns rule your life, you're letting it beat you, you have to take control, be more positive"
Wise words, he was right, I moved into remission a few months after that. I know its difficult to remain positive all the time but seriously you have to try. Look on the bright side, you haven't had surgery yet have you? so things can't be that bad, there are people everywhere worse off than oneself. Hope this helps a little. In the meantime, have a look on www.wikipedia.com, it tells you all about Remicade and what to expect.


Ruth

 

[xrayzerase]

thanks

thank you both for your honesty.
i hear it-and i listen.
thanks.

 

[SoccerMom]

Andrea, I did damage control before I started on Remicade (high doses of Pred. & a blood transfusion) & it took 2 infusions for me to notice a difference(& I take Entocort). I go for my 4th infusion in 2 weeks. I usually have a headache & flu like symptoms for a few days after but it is way better than what I was going through before. Have you talked with your Dr. about how you feel & the anxiety you seem to have? It can be part of our disease to have problems such as these & there is good treatments for it. Chin up Girl

 

[TammySue62]

Remicade

I too feel like crap after an infusion like you said soccer mom head ache and flu like symptons for 2 days.Then I feel great for 4 wks. The I go downhill from there untill the 8th week when i get my next infusion. Ive been on Remicade for years,since it first came to Canada. Hey soccer mom Have you had ant reaction to the infusion while its going in your blood stream. Your face feels like its on fire and it goes beet red then you have trouble breathing (this happened to me 3 times) just dont panic tell the nurse to stop the infusion right away and wait 10-15 mins and restart it again. This sometimes happens if they dont give you the pre-meds before the infusion. That would be 2 tabs of tylonal and 2 tabs of benyldril. Then everthing will be just fine you get sleepy and have a nice dream. nighty night


TAMMY

 

[SoccerMom]

I too feel like crap after an infusion like you said soccer mom head ache and flu like symptons for 2 days.Then I feel great for 4 wks. The I go downhill from there untill the 8th week when i get my next infusion. Ive been on Remicade for years,since it first came to Canada. Hey soccer mom Have you had ant reaction to the infusion while its going in your blood stream. Your face feels like its on fire and it goes beet red then you have trouble breathing (this happened to me 3 times) just dont panic tell the nurse to stop the infusion right away and wait 10-15 mins and restart it again. This sometimes happens if they dont give you the pre-meds before the infusion. That would be 2 tabs of tylonal and 2 tabs of benyldril. Then everthing will be just fine you get sleepy and have a nice dream. nighty night


TAMMY

Hi Tammy, I usaully take claritan (sp?) & tylenol before. I have a 2 hour drive home & benedryl makes me sleepy) Now that you mention it the last time I had an infusion my face got really warm, I didn`t have trouble breathing though. Thanks for the heads up! I would probably freak out if I wasn`t prepared for the possibility. I am up to the every 8 week schedule now & am noticing break through symptoms after about 4 to 5 weeks, it is very annoying. Are you on anything else? I go back in 2 weeks for my next one & I can`t wait. I always take a nice nap as soon as I get home, once I slept through the whole infusion. My nurse woke me up to let me know that I was done, I was mortified! She was very nice about it & said lots of people do it.
Take care, Amy

 

[TammySue62]

SoccerMom

HI SoccerMom

Yah thats true alot people fall asleepBut ,me for some reason cant because just as I start to do the nod the nurse comes around every 15 mins. to take my blood pressure. That drops preety low too while geeting the infusion. Mine is always low to begin with. Then when I get home I too also have a nap. Start to feel better in 2 days. For drugs that Im taken right now are 2 tabs pred;(cant get below that for some reason have to stay permantly on) 2 tabs cipro, 1 Folic Acid 8 tabs pentasa, multi- vitamin, vitamin D, oxycodone 20mg) or Dilaudid (12 mg)gravol every 4 hrs Nexeum (the purple pill) VSL#3, actonal(once a week for osteoerrosis sp?)Lorezapam 3 tabs,bactenol (muscle spasams) and REmicade I think thats enough for now lol Do you get your remicade infused by gravity or is it hooked up to a pump?


You can go to the chat room now if you need more answers to your Questions cant seem to pm you. LaterInow your online now so I will wait for your answer




TAMMY :canada_flag:

 

[Valentina]

hey havent been on in a long while, sorry to hear your still so down, it takes us all a while to find our groove with this, your still fairly new to this and still taking in all this info and dealing with the fact that this is part of your life from now on, so dont be too hard on yourself, or apologize for it, take your time with it all. weve all been through it, and some of us are in a different place than you, but that doesn't mean that where you are is wrong or that anyone should make you feel bad about that. Crohns is bad for all of us. Its all relative - its bad wether youve had surgery or not had it, wether youve ever found remission or a drug that helps.. Its bad, so dont feel you have to rate your illness against someone elses. Your entitled to feel like crap and talk about it.. This is a place to vent and ask Qs so type what you need to in my opinion. This is a "Crohn's" site after all. OK rant over
I really hope the remicade kicks in for you very soon, and you can see some light at the end of the tunnel so to speak, thats prob all you need to get out of the crohns blues, so my fingers are all crossed for you.

p.s it took me about 6 or 7 infusions before I noticed anything at all, and I was on MTX shots (25mg) and getting 'a bag" of steroids with my infusions as well. I find I feel pretty yuck after and the steroids can make me feel pretty out of it and restless for about a week after. Also.. this might just be me, but no 2 infussions ever really feel the same for me, 1 time I might feel great after, another Im in bed for 2 days. Hope this helps.

 

[xrayzerase]

to valentina

i just want to say thanks
this is all i meant to ask for.
i am home now with my parents-and-trust me-i get it from them too--you have to fight-not dwell. i tell them that is why i take the vicodin right now-til remission-or at least-til i get to where i adapt a little more-or something-i actually force myself to spend most of my day working...and not thinking about the cd at all. i never feel great even w the vicodin--but it does allow me some "peace" so i can at least work.
i appreciate you seeing that it is not just depression speaking.
i didn't want to say anything-because i know everyone is "right"=you can't let this swallow you.
thing is--this is VERY new to me--and i'm glad you remembered that.
i went from the dx of mild to severe-and--i need to get it in my head.
from my dr thinking pentasa--and the entocort would put me in remission-but instead-i went into a worse sickness than i had before all the meds. i was scared--but called my dr-and he responded right off. i totally trust him.--and that is something i am grateful for. anyway-after taking blood- he told me the inflammation (c-reactive protein blood test) showed it was very aggressive-and i had to start right on remicade. ok. i did. at least there was a plan--i was in pain-took the vicodin til i started the remicade (had to get insurance approval first or something) -but i lived-cause there was a plan. then he told me the remicade should work the first infusion--but there is a chance it may not-and may need to go to 6mp (i think added to rem.)-but-to see how this goes first.
thing is-i am feeling worse. and yes-it got me worried-even my dr felt bad (which i ofcourse know is silly--as we all know-dr and patient-that there is no definite. it is trial and error. but-he took more blood and i got the 2nd infusion yesterday. no trouble with the infusion-both went smoothly-but-
lastnight-bad. and today -bad. but took 7.5 of viocdin instead of 5 mg--and it helped. i just have to push him on this that i need the pain med til i get whatever is next. i realize there are still other routes yet to take: 6mp next-then maybe prednisone if 6mp doesn't do it. and then -yeah-surgery.
i am cool with whatever i have to do--but--the unknown is what was freaking me out. yeah-i read some on it--but to actually go through what you read-is very different. as i learn and live through it--somehow-knowing what to expect (even if not finding remission for awhile) is ok-as long as i am not in the dark. i was scared cause SO many thing happened SO fast--as it seems to happen to most--but from most things i read here--the first months are the worst-as you have to get "used" to it--you know--to the various trials and errors.
lastnight i was up all night-i wrote some notes to myself on it all-to get it out-and basically it has just been a lot to get used to. and i am. i also feel horrible to have to have others worry about me. yes--you get used to that too-in a "sense"--when my dad had colon cancer-it was hell--but we got through it. and he fought it-and beat it.
i am a big fighter
i LOVE life
i just am trying to take in all this stuff in a short period of time--and there are times when i get nuts cause-yeah-i haven't been able to work or live normal life-(like many when in bad flare)-and have to work from home-and i can only do that if on pain meds.
i have it severe. no surgery-YET. who knows? i don't. trial/error.
what i came to lastnight when writing to myself is i hate to even THINK --oh --others have it worse--it could be worse. that is no comfort. i wish no one was ill. i mean--i know i could be worse-yeah. but-it also is getting bad. and it might be worse. who knows. i don't think that way-i want to battle this thing and do all i can to LIVE-and REALLY live. that is positive. but i got scared.
i needed to hear from others.
i'm sorry if it went on for a few weeks or months even--but this has all been the way its been going-i'm getting sicker-the flare is worsening-(yes-i see now that is part of it all-getting off steroids often makes it worse etc-and eventually remicade may not work-i get it. but-to live through it is another thing. and-in a short time it just-is a lot. and i felt so bad talking to my family and friends about it all the time when i felt scared-as i don't want to worry them--which is impossible. when my dad had cancer-he would cry-it was hard. to see this. you feel so helpless. i love my dad SO much. but--i'd rather he show how he feels. and so i try to remember that.
but-also-he wasn't crying all the time--other times (he was in hospital over 3 weeks) he would play cards with us -be silly-and get anxious to get out and free again.
i guess all i am saying is-i thought-you know-when i joined here-i wasn't all negative. i was actually very much involved in wanting to learn-and talk with others-and share -because i think dr's can learn a lot from their patients--and that is what i thought this place was all about.
yes--be strong
but to be strong sometimes means you cry
and sometimes some cry longer than others
but-they don't cry all the time. i've read most stuff here-and i see it.
i see ups and downs.
and that is how you learn
by speaking it all.
and i truly truly appreciate you saying what you did.
it made my day.
i thank you more than you know.
as for the info on the rem--yeah-i think the bloodtest will reveal the next step-add 6mp or not ---but-til yesterday-i didn't know that..or-he didn' really go into detail whether he would do just 6 mp or add it to the rem. still don't know--but-just him taking the blood is a step to whatever.
anyway-
thank you
i honestly think we all have good hearts here-as well as a fighting spirit--we want to band together ause it is not just about support--but it is about wanting to know what our illness-disease-is. to not blindly walk into a dr office (even if you trust him/her 100%) --but to know-and to actually think maybe -just maybe-the dr's will maybe see-yeah-maybe listening to this band of people will further help the research.
so-
i thank you
and i thank everyone
i do get it that one has to see when they get depressed-i don't want to be on a site where people only go on about self-pity--but i don't think i have been that way--except for at times. and it occurs to me: that's ok.
*hug*
andrea

 

[Valentina]

hey xray.. no worries, I recognize a lot of your questions and fears from when I was first diagnosed, I think some of us just need to remember (or be reminded) what a scary and lonely time that was for all of us, and finding a site like this is a real life saver for finding information and support.
this time will pass.. but sometimes we have to help move it along in the right direction I suppose, I think if I were to give any advice it would be to try and have a few Crohns free moments if you can, I know thats easier said than done while your still suffering and havent found anything yet that helps. But you will

Also, a Q (u dont have to answer) are you taking ativan every day? I take it sometimes when Im anxious and need help to sleep (turns your brain off so to speak) I just cant imagine how I would feel taking it every day.. along with such strong pain meds, you must feel so blah and tired just from that. Just a thought, but I would think this would be contributing to how bad you feel (mentally - emotionally).. just a thought.

Chin up.. better days ahead, I promise

 

[xrayzerase]

thanks
yes--i did need the push-to get out of myself.
that i do agree with
glad you to hear about ireland/jonny-and all--you guys sound so happy
i think i may need to not be on this forum as much-as it tends to make me think about my cd---maybe once i am more out of my depression--and hopefully get out of flare i can be here in a good way--or you know what i mean.
ativan: yes. 3xday--but-it 100% got rid of the heartburn-so-i am sticking with it (for awhike anyway)--it is only .5 3x day. not much. librax-i know-has some sedative stuff in it too-and i also take ambien to sleep--and very true--the vicodin 3-4x day (7.5) will make one glassy (not tired though) the exhaustion from the cramps/burning/--the flare up-is what exhausts me.
true--the vicodin -i have to beware--as i have had drug addiction troubles in the past--but anyway-don't want to go on and on. already said all this.....
need to try to work today and play ball w/ my cat
(((hugs)))
andrea

 

[Jeff Inman]

Remicade is Awesome! I take Imuran all the time for "maintenance" while on Remicade and have to get my liver function (simple bloodwork) tested every 3months to insure no damage is being done by the Imuran (Azathioprine). I believe Imuran is less damaging than Prednisone (long-term).

I have also experienced the heart racing "beet red" face during a Remicade treatment. I think it happens when they drip it too fast. Now I get a Bendryl shot with some Pepsid and Hydrocortisone just prior to the IV and sleep thru the whole thing, I kinda look forward to it! I was on Entocort, Asacol, and Pentasa for a while before Remicade. I think they all address specific areas of your intestine (upper, lower, etc.) so everyboody's needs are gonna be different. I do recall a crappy overall feeling while I was on Entocort, so I quit it after a few months. I think I replaced it with Pentasa for a while...Now I just use Remicade and Imuran (1 mg Imuran per lb of body weight)

I've been off/on predinisone for about 10 years, but my max dose has only been about 40 mg...makes me feel like Superman until I taper it down to 20 mg. Silly me, I thought a steroid would "pump me up"...so I used to try to work out while I was on it...I later learned that it is not that type of steroid....it converts muscle into fat or something and makes you retain water...actually weakened me in the end!!! Anyway...it seems a lot of people on the site are using Prednisone extensively. I avoid it at all costs and only take it about 8-weeks at a time during a major flair-up. Of course, I realize everybody's situation and needs are different but I have had huge success with Remicade & Imuran. Remicade is "rat-based" anti-body.
I am currently considering Humera "human-based" anti-body as an improved alternative. I highly recommend minimizing or simplifying the number of drugs taken and seeking alternatives to Prednisone. Hang in there !!! -Jeff

 

[xrayzerase]

hi jeff
wow-thanks
this is a cool reply-it tells me a lot.
i know there are many info-sites out there--i have read many.
but-since like we all say: it is often "individual"-is true-but some things are common-ie-like the "red face" during the drip. i had that too-but wasn't too worried-didn't even think about it-just felt it was hot-and my mom told me my faca was red. i had no trouble breathing though. during 2nd infusion-i got up to make a stool-carried the drip bag--but i guess i didn't hold it straight enough or something-and i saw blood in the tube going into arm. no big deal. it just stopped dripping-so my nurse pushed through some saline and whoosh~it went through and the drip was dripping once again.
they start my drip REAL slow-then speed it up as the 2 hours go on. sometimes (this 2nd time) it was closer to 2 1/2 hours--not just cause i stopped it when i got up to got to la toilette--but also-the drip i guess was slower most of the time.
i guess it is just good to hear tidbits like-"red face"--as if i didn't read this here-i wouldn't have known and probably would have panicked. they don't mention this type of studd on "info-sites"-or if they do-not in a way that is as "personal"-so-sometimes i glance over it.
so-it is good to know this stuff.
i guess that is all i was looking for...
but i know-i was in a glum mood
oh--good news: upping my dose of prozac has started to help-i feel less depressed. still in flare-and on vicodin. but-i am not so in the hole.
i evenb feel silly and am being a jokester at times
i admit--i missed that side of me.
its com ing back though
anyway-i just stopped by and saw your reply-so wanted to thank you
and also wish you continued luck.
yeah-my dr mentioned humira to me too. though if the rem works -he may not mess with it. humira will be like an "in-reserve" thing. anything to stay away from pred.
i am still on entocort--but that is nothing compared to pred. and the pentasa: that is totally a no-worry thing. i'll be on that despite what else i go on-even if he adds the 6mp next time-i will remain on pentasa. but oh well. i'm used to all the pills now. kind of just part of the day now. i'm up to 25 pills (meds) a day and 7 supplements. so..what can you do? the only thing i noticed -i think from the pentasa-or maybe the entocort(?) (before the rem) was losing some hair-very little though. and i have a huge lion-mane-so i am not too freaked. and the pentasa-or whatever else at least stopped the "D"--still make lots of stools (due to falre--like 10 or more a day still--and still have low grade fever--but today it was real low. 99.2 yesterday it hit 99.9-and the few days before it was around 99.6/7 -but sometimes just 99.4. soon i'm not gonna bother with temp thing--but for now-i keep track for my dr etc.
anyway-thanks
off here
work

 

[suzi]

when i got my first infusion it was a last ditch attempt while in hospitol, i had become tolerant to steriods and this was last thing to surgery, i was really poorly but in the evening they gave me infusion, in the morning i was "cured" well not quite but it was like magic, i then started infusion's once every 8 weeks and it has worked a treat, i dont seem to have any adverse effects to infusion. i take a couple of hours off work go to hospitol then go back to work after. good luck hopefully it too will help you

 

[ruthymg]

Remicade is Awesome! I take Imuran all the time for "maintenance" while on Remicade and have to get my liver function (simple bloodwork) tested every 3months to insure no damage is being done by the Imuran (Azathioprine). I believe Imuran is less damaging than Prednisone (long-term).

I am currently considering Humera "human-based" anti-body as an improved alternative. I highly recommend minimizing or simplifying the number of drugs taken and seeking alternatives to Prednisone. Hang in there !!! -Jeff

Hi Jeff, I too am considering Humira after I decided not to take Remicade. I'd be interested to hear of any info you may have on it.


Ruth

 

[laura2002]

I would also be interested in what you've learned about Humira. I used to be on Remicade, but stopped it when my husband and I suspected it was causing a problem with me getting pregnant. Two kids later, my flares are more frequent, but I can't do the Remicade anymore because I built up an allergy to it. My doctor wants me to try Entocort for now, and if that doesn't work, then we're going to explore the Humira. Not sure if I want to go that route again... Thanks, Laura