Remicade Club Support Group

Crohn's Disease Forum

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Yeah, Mini, give it a try - I felt great on it for the first 3 infusions and thought it was going to be my wonder drug.

My reaction wasn't during an infusion. It started about 5 weeks after my 3rd infusion. I just thought I had the flu - fever, chills, body aches, etc. After about a week, I went and got antibiotics, which didn't help. I then started having bad chest, arm, and shoulder pain, and trouble breathing. Went to the ER, and they sent me home with an inhaler after doing a chest x-ray and CT scan. Went back to the ER 2 days later because I could hardly breathe at all and the pain was unbearable. They took me to the cardiac cath lab immediately and also did an echocardiogram and found all the fluid in my lungs and heart.

I guess there is no way to tell for sure that the reaction is from the Remicade, but at this point that is what they are saying. If not, though, then it is lupus (another autoimmune disease), rather than just a lupus-type reaction to the Remicade. It should go away, though, if it's a Remicade reaction. Time will tell, I guess.

Thanks for all the good wishes.
 
5 weeks after your third infusion eh??? Mmmm And my third is the 12th...Well it makes me feel better so far so I guess go with it until it hurts ya??

I am glad you are ok Krom!!!
 
Oh No, Kronmom! I've been thinking about you, but thought all was going really well. I'm so so sorry to hear your news and really hope you are feeling much better soon. You poor poor thing...hang in there, sweetie.
 
Thanks Lola, I thought all was going well, too! I'm getting stronger every day. How's your BF doing?

Lisa
 
Hope you are feeling better all the time, kronmom! Have they discussed a new strategy with you yet? Any indications as to whether it was really a reaction causing the lupus-like symptoms? I can't imagine worrying that you have to deal with yet another illness on top of it all. Hoping for the very best for you!

Re BF, thanks for asking. He ended up in the hospital for 8 days, 3 weeks after the 3rd infusion - those were 3 awesome weeks I must say. They ended up giving him the 4th a week early, and now he's on a every 4 weeks schedule to see how that works. He's now 2 .5 weeks into the 4th and started having some light symptoms 2 days ago, so I guess we have to just continue to be patient and hope this is going to work for him.

While he was in the hospital, his gastro was really upfront in saying that he wasn't very optimistic, and BF has been having a hard time getting over that. I know he was just doing his job, being honest, but my reaction was more "Gee, thanks buddy. Just what he needs to hear right now." Anyhow. bleh.
 
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Lola - Thanks. Yes, I'm getting stronger every day, though it's very slow-going. I'm seeing the rheumatologist tomorrow. I'm hoping there is some kind of lab test he can do that will tell us whether this was a reaction to the Remicade or truly lupus, but I'm not sure that is possible. I go back to the GI doc April 8 to see where we go with the Crohn's. Tysabri has been mentioned, but that just really scares me! I've failed Pentasa, Imuran, Humira, and now Remicade. I'm on prednisone 60 mg right now, which is doing the trick, but of course I can't stay on that (it's causing me to have to inject insulin up to 4 times a day).

I'm glad your boyfriend had 3 good weeks, and hope the Remicade will kick in better for him so he can have more relief. It's too bad the docs can't be more encouraging! I will keep my fingers crossed for him. Hang in there!

Lisa
 
i love that analogy! i have no idea what my car is worth (probably nothing...) but my Remicade costs $10,000-ish.

i'm going to steal that phrase.
 
Well... I have a Remi today at 4. I'm going every 6 weeks now at a double dose. COME ON REMI!!! Pick me up... I just need you to work for 6 more weeks!
 
Well don't have that face about it, MsSickandTired! Remicade has been so good to me! I have only had 4 infusions and I am feeling SO great! Maybe this is just what you need!

Katie - how'd it go? (OMG - was Doris there??)

E Cameron - is your double dose kicking in?

Kromom - I love that you are still our cheerleader even though you are off of it. How are YOU feeling now??

My Remi is 3 weeks away - and I am excited! (Is that weird?)
I really miss the 2 or 4 week intervals, ha.
 
Oh man. Well it was a 5.5 hour infusion. I had a panic attack or something. I started getting really hot feeling, nervous and excited, my HR, BP and temp went up. I was at 120 for HR, 128/90 something for BP (which is high for me since I sit at 90/60) and then my temp hit 100 even though I was on Tylenol.

This all happened when I was at a rate of 80... and it happened so randomly, I was talking and eating and all of a sudden I freaked. I don't think it was a reaction to the Remicade, but I can't really say either.

So they slowed the infusion WAAY down and I sat at 80, 125, 175, and 200 the rest of the way... going up mostly every half hour, but at the end I had them go up every 15 again.

I'm just angry with myself if it was a panic attack...
 
Hmm... mine was an hour in too... and it went away really quick. I've had this before, but have always thought it was the Benedryl kicking in because I get really tired right after. This time was just worse and lasted longer.
 
I thought I might join the club.

I've been on Remicade since Nov last year. Felt great for about three months, unfortunately I had a flair six weeks into my first eight week dose (I was also weening off prednisone and taking Imuran). I've now switched the Imuran to Methotrexate. I had a Remi dose last week and started to feel better after a week to the day. Hopefully this time it'll stick, otherwise the next option is to go to six week doses.

Btw I take 485mg (I weigh 97kg)
 
MBH - I will never stop cheering for my Remi buddies, even though I can no longer take it! I want long remissions for all of you. I will just have to find something else that will work for me. I am doing a lot better, thanks for asking. Getting stronger every day. They still don't know for sure if it is actually lupus that caused my pericarditis/pleural effusions or a lupus-like reaction to the Remicade, and may never know, but the prednisone and Plaquenil are keeping the symptoms in check. Maybe the only way to know will be to go off the medications and see if I get any more lupus symptoms. I'll be seeing the rheumatologist again next week, so we'll see what he says. I wish you continued success with the Remi!

Best of luck to the rest of you on Remi, too!
 
...so, my doctor is giving me the choice between Remicade and Humira...

I guess if the first one doesn't work, I can always try the other... I'm feeling discouraged because it appears I had adverse reactions to both Imuran AND 6-MP. I was really hoping one of those would have worked. I tried to get into a clinical study but I am taking too much prednisone to be accepted (and my meds would have been covered, too)

I'm having a hard time deciding which way to go. Remicade is 4 hour infusions, the Humira is self-injectable. I'm a little creeped out to give myself a needle, but I think I could do it. A nurse would show me how to do it the first time. I also am going to have to pay for part of the drug, and I think Humira is cheaper?
 
Actually, I think Remicide is the cheaper option, at least on this side of the Atlantic.
1 infusion is about Euro2,000 for every 10 week (For me any way), but 2 Humira injections are Euro2,000 per month (I ended up with 4 injections a month)

Which ever option you get, you'll be fine. With the Humira pen, you don't even have to watch the needle, you just push and click.
 
Good luck Lizzy - hope the Remi works for you!!

MsSickandTired - Check out the thread called "Starting Humira on Tuesday - what can I expect?" under "Treatment." It was from last fall sometime. There is info there about getting Humira free or pretty cheap. I've used the plan in the past and got it free for 5 or 6 months.
 
Question for my fellow Remacadites:

What are the chances that if you develop antibodies against the Remicade, you will also develop antibodies against Humira?

I've been on Remicade for several years now, but I've noticed that it only seems to make me feel better for like, two weeks. And then I have to endure a crappy six weeks until my next infusion. The only reason I can think of for this is that I've developed antibodies against the drug.
 
Procyon said:
The only reason I can think of for this is that I've developed antibodies against the drug.
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I'm almost positive that there is a test you can take to see if you have developed antibodies to Remi. I believe it's one way to tell if you can go back on it once you've stopped.
 
w00t! Just got home from my 5th infusion! The nurse dug around in my arm with that needle like a 2 year old searching her nose for a booger, but besides that - no problems. I was surprised that she didn't take my blood pressure once the whole time until she took the IV out. Usually they take it 5 or 8 times or so.
It took exactly 3 hours, not including the 1/2 hour I had to wait in the waiting room first.
Haha - I got scolded for bending my IV arm too much while trying to text a cute boy to keep me busy. Then the cute boy laughed at me for getting scolded :tongue: .
Yay Remi!
 
I'm joining the club! I've been on Remicade for I dunno how long now. But I'm down to every 4 weeks for an infusion. I took it a few years back too, but after I got married and had to find a new GI because of insurance, I got off it. Now I'm back and doing well on it until recently... but it's just stress making my body act up.
 
Procyon said:
Question for my fellow Remacadites:

What are the chances that if you develop antibodies against the Remicade, you will also develop antibodies against Humira?

I've been on Remicade for several years now, but I've noticed that it only seems to make me feel better for like, two weeks. And then I have to endure a crappy six weeks until my next infusion. The only reason I can think of for this is that I've developed antibodies against the drug.
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hey procyon
yep mbh is right, there is a test they do to check to see if you have the antibodies. i had it done and was loaded with them.
i think it is called the prometheus test? i just searched it up real quick and got some answers that said it was a diagnostic test for ibd itself, so im not sure but if you try "prometheus remicade" you might find something.
good luck
 
*bump*

I'll be starting in the next few weeks in a last ditch attempt to save my large intestine.

Other than the TB test, what else do I need to expect?
 
My doc did a colonoscopy, and there was no need to do an antibody test afterwards, I guess... There's too much inflammation there for the remicade to be working properly.

So I guess I need to quit the club. This medicine isn't doing much for me anymore. Oh well -- it was at least six or seven years. We had a good run, Remicade. I'll miss you. <3

Katiesue said:
I have a consult on the 24th to discuss other options... wooo?
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Because of your reactions? :( Good luck. Keep us informed.
 
lol pro you dont have to quit the club. it includes people who are currently taking it or have in the past.

well...at least i think so. im in here and im not on it anymore!


good luck both katiesue and creepy. ill be thinkin of you guys
 
lol. You and me and Katiesue can make a "Remicade Stopped Working Right for Me" club. :(

And yeah Creepy -- good luck to you as well. Hopefully the Remicade will be the salvation of your intestines.
 
No, no quitting. Once a member always a member. I think you just get a new retired-remi-club membership card.
Sorry it's not working for you guys =(
Creepy - good luck, keep us posted!
 
My joining the club is postponed....just had surgery for my 3rd abscess in 3 months...I find out Tuesday when I will be rescheduled for my first infusion....once you get your first dose, how long does it take to know if its working??
 
s.a.m. said:
...once you get your first dose, how long does it take to know if its working??
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Awww.. hope your surgery went well.
First dose kicking in is different for everyone. Some people have reported to feel it working DURING the infusion. My nurses said that it's usually the 3rd or 4th dose where it kicks in the fullest. Mine was barely noticable, and I suddenly said "Hmm.. I think I'm feeling a bit better", and then it continued like that until I got to about 95% normal all of the sudden. It was very gradual. With Humira though, it kicked in fast, and they are similar, so you might have that type of reaction.
Let us know when your date is, and good luck!
 
I took Remicade a while ago... Does that make me part of the club too??? When I took it it gave arthritis in my left hand for months, anyone else have that?? Not necessarily the left hand but arthritis?
 
@s.a.m.--first advice is try and relax! if your nervous and have a higher bp, they wont know if its just you or an effect from the drug.
other than that, umm, take a book, ipod, phone etc! or pillow if youre like me and the benadryl acts like a tranquilizer for you lol.
i hope you have a few relaxing hours or a good nap.
most people, me too, came to enjoy their infusions. a few hours in the middle of the day to read, rest, play games, have a snack in front of the tv, or just chat :) its nice.

@coronetrt--yup that makes you part of the club!
i didnt get arthritis from the remi, but i have had arthritis from just the CD itself. are you positive it was a side effect from the med? it couldve been a coincidental flare up of peripheral symptoms
 
I've got a question about remicade infusions. Has anyone experienced weight gain in the days after an infusion? I'm a bit overweight and I've been working out and eating healthy to try to lose it, but in the last couple of days my weight has actually gone up despite the fact that I haven't changed anything. The only new factor is the remicade infusion that I had on Tuesday, I was wondering if anyone thinks it could be the cause. I'm not talking anything dramatic - just a couple of kg's, but it's pretty significant in a couple of days especially when I'm doing everything to lose weight.
 
Yeah.... my that arthritis was weird and it only started after the infusions. Several months after my last infusion the arthritis in my hand wore off.

Rafham a couple of Kg's is like 5 lbs in a short amount of time... I wouldn't be surprised if the Remicade was messing up your system some how. It is after all made from mice...or it was when I took it.

Why didnt the docs give you something like Humira??
 
coronetrt101 said:
Yeah.... my that arthritis was weird and it only started after the infusions. Several months after my last infusion the arthritis in my hand wore off.
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huh. well, in my opinion, it could still be crohns related. who knows maybe the arthritis popped up then regardless whether you had remi or not, and then went away because the medicine helped alleviate it.
just thinking. but you know your body better than anyone of course.
 
Thanks everyone for the advice, my infusion went well. I am home now, just a bit tired. Have a great weekend everyone!
 
To anyone here receiving Remicade w/ fistulas...did you find yours drained more/less after words.
I received my first dose about a week ago, yesterday there seemed to be more then usual draining, but today it feels fine.
 
hmmm.
i honestly dont remember if it increased or decreased.
all i know is that it decreased over time cause eventually the fistula went away due to the remi!
sorry for not more specific than that
 
Anyone else getting bad acne from Remi? I got some from Pred,
and since I've been on Remi, its only gotten worse, where I never
had a problem before all the drugs. Being that I am allergic to Benzoyl
Peroxide, I am limited to the acne treatments I can use.
I am not a happy camper right now.
 
MINI Cooper said:
Anyone else getting bad acne from Remi?
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OMG YES!!! I have NEVER had acne in my entire life, and all of the sudden - here it is. I don't think it's that bad, but my mom says it's terrible. My face is just splotchy. Not pimply either. Is acne diff than zits? She thinks it's a systemic allergic reaction to one of my meds, and I should quit them before some infection gets into my bloodstream. Ha - silly woman, like I'm gonna quit this remission.
 
nope no acne, but its probably because of the decreased immune system, the bacteria on your face infects your pores more easily. I'd try some witch hazel to clean your face with.
 
arg. Just another reason to hate Crohn's.
First I was complaining about my moonface on Pred,
and now this.
I just ordered some stuff with Tea tree oil and aloe vera.
hoping that helps.
But yeah, I'm not about to quit Remi so I can have debilitating
pain again!
Thank God for makeup!!! :ylol2: :voodoo:
 
mini! good to hear from you girl! havent seen you much

no advice on the acne, sorry. i didnt have that problem with either pred or remi
 
Ugh, I hope I don't experience acne, not fun.

I just had my 2nd infusion and everything went great. I am still on the Entocort though. I tried to call my specialist and see if I can start weaning from it, because my appt is not until June and I don't want to wait. I am thinking I might start decreasing my dose anyways.

Anyone else on steroids and remicade too? How long did you do both?
 
kello82 said:
mini! good to hear from you girl! havent seen you much

no advice on the acne, sorry. i didnt have that problem with either pred or remi
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Good to see ya too! I'm still alive and kicking! :arghmatey_ani:
Next infusion is in 1.5 weeks- seems to be working for me so far,
despite the acne. Acne is better than horrible pain, right?
 
I fear I may be joining you all! Am seeing a new consultant shortly as my azathioprine is really not working for me and they think this will be the next step. Will let everyone know how it goes, I'm really hoping for a solution because at the moment I'm relying on MST (morphine sulphate) just to get me through the days and that's really not right!

In terms of acne, well I hope I don't get any of that I've battled with it enough. It didn't hit me with pred. I just got a chipmunk face instead.
 
I got chipmunk face big time too. And stuck with me for a couple months even after I was done with Pred. It's evil.
 
So we were having issues with my insurance company paying for my every 5 week double strength infusions because they said it wasn't "medically necessary"... well apparently they talked with my hospital and told them they weren't going pay 10,000 each time... so the hospital knocked them down to 6,000. THANK YOU! So now they are covering them... moral of the story... its only "medically necessary" if the insurance company is willing to pay for it.
 
how bout smack them in the head with a bowling ball, and then tell them that advil isnt medically necessary.
lesson learned, money paid, problem solved.
and frustration releived :)
 
OK question:

I have been suffering from BAD allergies lately. for about the last couple
months. Including small bloody noses EACH morning. I have been taking
a Claritin EVERY day just to manage it. I have NEVER had allergies before.
Now I am realizing this has been happening only when I started Remi!
I am wondering if Remi have me this?
I emailed my doc, hopefully he will respond back soon, but wanted to
ask people who may have experienced anything similar??
thanks.

PS. If it means being pain free, I will deal with the allergies, but ideally I would like to have NEITHER!
 
HOLY CRAP MINI!! I just had my first bloody nose EVER in my whole life a week ago!! (It was kinda cool though.)
I am getting little sore throats for a few days here and there, and a stuffy nose, but not like a cold, and my husband said it sounds like allergies, which I have never had before either. I figured with all the cottonwood floating through the air, maybe I was getting allergic in my old age or something.
Grrrr. Remi and I now have a love/hate relationship.

Yeah - still would rather have acne and allergies then crap my pants, but still...
 
Mini said:
I got chipmunk face big time too. And stuck with me for a couple months even after I was done with Pred. It's evil.
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Oh, I hear you. I got off a go with the Pred towards the end of April, and I still have the moon face. I swear, it takes forever to go away. :( ...I hate pred. If I decide to go for the biochem major, my career goal is to create a medicine with the effectiveness of pred, minus the long list of side effects.

Anyway, good luck to all of you who have recently started the Remicade. Glad to hear that some of you seem to be responding to it. :)
 
good luck creepy!
let us know how it goes
take a pillow with you if bene makes you sleepy. youll get a good nap in :)
 
My infusion is tomorrow too. I'm gonna shout it EVERY time I make it.
I MADE IT TO 8 WEEKS!!! Waaaaah - HOOOOOooooooo!

Good luck tomorrow Creepy L, I hope it works for you as well as it's working for me!! Are they gonna put you on/keep you on anything else?
And OO! If you take a nap, ask for a blankie! My place has the most delicious blankie warmer. I am SO looking forward to that!
 
Good luck Creepy... everything should go great! Blankie warmers?! WTF... if I ask for a blanket I get a sheet... and if they are nice they give me two sheets. I've come to realize that that hospital I've chosen to go to for the past 3 years isn't the best out there... kinda saddens me to know I could have been in a completely different place treatment-wise if I had been referred to a different GI.


I just had mine Thursday, took Claritin instead and it went great. Actually I DIDNT get Doris, and instead the Clinic Manager nurse hooked me up... it was my FIRST infusion that has only taken 3 hours and 15 minutes. She also ran my IV in my hand... never had that before, but it makes sleeping a lot easier.

Still not feeling back up to my 85%... about 65% as of now.
 
what?? when are your infusions?
I am off to mine right NOW. I called to schedule it sooner because
I was vomiting like crazy over the weekend. Now I am to go
in every 7 weeks instead of 8. I am off, see you when I get back.
 
3 of us infused on the same day? That is crazy!
I'm back - no probs. Shortest infusion yet, 2 1/2 hours!
Mmmm - waaaarm blaaankie...

Hope you feel better MiniCoop.
 
Remicade- the good, the bad, the ugly

Hello! I'm new here, but not to Crohn's. I was diagnosed 18 years ago. I've gone through 2 rounds of Remicade, in 2000, and in 2002. About a month after the second round, I had a major problem with little blisters on my feet and legs, and hands and scalp. (I lost all of my hair). The demotologist said it was because of the Remicade. I was sad, because the Remicade made me feel so much better. The doctor said I couldn't have it any more. I've wondered if anybody else has had this type of reaction?
Sandy
 
Hello peeps, am also new here, but not to crohn's or remicade!! (or infliximab as its called here in the uk)

Got my 7th or 8th? infusion tomorrow (i have it 4 weekly now - 500mg)

Like someone else mentioned earlier in this thread, i felt that it wasnt working for me, and as the months have gone on, it seems to be doing something for me now, i am still on steroids tho, but only a low dose, (7.5mg a day)
The plan is to come off the steriods 2.5mg monthly, after that is when i will soley relying on remicade to control my crohns. (i am intolerent to 6mp and azothiroprine, and methotrexate didnt do diddly squat for me.



NOT A SOLID 1 FOR ALMOST 2 YEARS NOW!
 
Hi Sandylou and Alimc! Welcome to the forum!! Alimc, if you make you own thread to intro yourself, you might get a more proper welcome. This post might get hidden in here.
(Umm.. were you talking about a solid poo there in your last sentence? I wasn't sure. I haven't had what I call a "man-poo" in for as long as I can remember, but I am feeling 95% normal, so I will take it!)
 
My Butt Hurts said:
Hi Sandylou and Alimc! Welcome to the forum!! Alimc, if you make you own thread to intro yourself, you might get a more proper welcome. This post might get hidden in here.
(Umm.. were you talking about a solid poo there in your last sentence? I wasn't sure. I haven't had what I call a "man-poo" in for as long as I can remember, but I am feeling 95% normal, so I will take it!)
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Will do!!.. (yeah i was talking about poo :lol: ..)
 
I have my 3rd infusion coming up this week. I just found out as well I need to take Cipro for at least 2 weeks.

Anyone had to do both the antibiotics and remicade at the same time as well??
 
s.a.m. said:
I have my 3rd infusion coming up this week. I just found out as well I need to take Cipro for at least 2 weeks.

Anyone had to do both the antibiotics and remicade at the same time as well??
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I didn't think you were allowed to do both...
 
I start Remicade in the next couple of weeks. I go this Friday for TB skin test and have been on the phone the past couple of days with my insurance company to make sure they will pay for it. It looks good on that end so we'll see how this stuff works soon, hopefully.
 
my dr is thinking about starting me on remicade, wont know till next week sometime hopefully, i hope he does tho because it sounds like its working well for most of you! im on pentasa and pred now and it doesnt help at all!! oh and i have a question, what do they do for the tb skin test? my mom tryed to scare me saying they cut off a piece of skin, that cant be rightm right?
 
yyyeeaaaahhhhh....that doesnt sound fun eaither......does it hurt at all, i watched a thing on the travel chanel they were in india and said tb kills like 200 thousand ppl and it causes these leisions how ever you spell it and it was horrible looking!!! these ppl had like the whole side of their face missing!! it was creepy, but this would be like a flu shot righ, like it wouldnt possibly GIVE you tb?
 
ok that makes me feel better, lol funny how im more worried about the test for tb then starting remi, even tho its not official yet if i will be starting it or not, ah well i remember they told me the tetnis shot would feel like the flu shot and it felt like i was punched foor 3 days after, yea i have no problem with pokes just the feeling of stuff going in if it burns or what not ^-^ like torridol that stuffs evil
 
Hi everyone,

It looks like I'll be joining the Remicade club on Monday....my first infusion is scheduled for 9:30. I have a few quick newbie questions for you all. First, will I be ok driving myself to and from the appointment, or would it be better to have someone with me the first day until I know how things are going to go? Has anyone been too sick after an infusion to get themselves home on their own? Also, I know side effects can include flu-like symptoms. If these do kick in, about how long after the treatment do they show up?

I am so excited about starting this...I have high hopes that it will put me back in remission and get me away from pred!

Thanks everyone!
Beth
 
Hey! I would bring someone your first time just because you can feel very tired and wiped out afterwards.

Not sure about the flu-like symptoms!
 
Yay Beth! Welcome to the Remi club!
I was VERY sleepy at my first infusion because the Benadryl knocked me out. I was fine driving home, but I slept more once I got home. (I take non-drowsy Claritin now with doc's permission.) Not sure about the flu symptoms either. I guess some of the side effects can just show up randomly, not during the infusion.
GOOD LUCK! Post when you get back so we know how it was!
 
congrats!
i think it would be wise to have someone with you, just in *case* something should happen and you dont feel up to it. might as well take a precaution the first time if you can!
good luck beth, hope that it does wonders for you
 
Hey, can I join your club? I'm going to start Remicade as soon as I get a negative TB test.

Chelli
 
I start my first Remicade infusion on Monday so can I join the club???

I'm a little nervous about it because the Imuran I was just on started to give me problems with my liver. I hope that Remi will work much better and that I can tolerate it well. Are there any last minute things I need to know?

Also - does Remicade help with the fatigue and the joint pain from Crohns? I hope so cuz those have been kicking my butt lately!
 
Well I had my first Remicade infusion today and I think it went well. So far, I feel just fine. The only issue was with the IV, which they had to replace about halfway though. I'm still tapering off the pred, so I guess we won't know for certain if it's working until I'm off the pred completely, but I've got my fingers crossed!
 
I had my first infusion yesterday. I was fine while I was there but felt really nauseated on the way home. I still feel that way, but no vomitting. Is this normal?

I still feel a little lightheaded too, which is not normal for me. Probably the benadryl and not the Remi though???

I've also had some d and lots of gas and bloating in my stomach. I know that it is not supposed to help until the 3rd or 4th infusion, but I hope it gets better than this!

Next infusion on July 17th. Hopefully things go better because I have a benefit that night!
 
Sensitive teeth anyone?

:ymad: hi there. just a few days ago i got my second dose of remecade. every since my first dose in the hospital 3 weeks before that, my teeth have been incredibly sensitive, like i have to microwave my water and drink out of a straw. i cant eat anything out of the fridge without tempering it. it even hurts to breath in through my mouth. anyone else have this??:ylol2:
 
bball diva said:
I had my first infusion yesterday. I was fine while I was there but felt really nauseated on the way home. I still feel that way, but no vomitting. Is this normal?

I still feel a little lightheaded too, which is not normal for me. Probably the benadryl and not the Remi though???

I've also had some d and lots of gas and bloating in my stomach. I know that it is not supposed to help until the 3rd or 4th infusion, but I hope it gets better than this!

Next infusion on July 17th. Hopefully things go better because I have a benefit that night!
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HI, I was incredibly nautious for almost a week after my first infusion. and had absolutely no energy at all. i just recently had my second and so far so good, only mild nausia, just headaches and sensitive teeth. and i have lots more energy (doesnt mean the nausia still isnt coming). hopefully you will start to feel better after your second infusion. hope this helps, im no expert im just new at this too!! only diagnosed about 7 weeks ago. lucky to be on the remicade so quickly:)
 
my dr office called and im going to schedual my tb test then i think i should be starting remicade soon, my mom is worried about it tho because i gave her the info i have on it to read and she got worried over the side effects, any insight into what i should tell her to ease her mind???
 
chefette said:
my teeth have been incredibly sensitive... anyone else have this??
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Have you been on prednisone recently? That can make your teeth sensitive.

SpoonNinja - What side effects specifically are your mom worried about? If it's the cancer risk, it's very slim. People on the placebo got cancer too ,they just have to report everything that happened to people in the study.

Hope Remi is going well for all the new peeps.
 
im not sure what she is worried about, i read over everything and have done research and i think it sounds very good, but i think she is just worried about it being a more serious med rather then just pills, she says its like for cancer patients cuz they have to go sit in the chairs for hours g etting iv meds, so i dun think its the remicade itself but that its such a more intense drug, ya no. so im not really sure what to do to help make her feel better about it, ive told her about this thread and that ppl on here dun seem to be having ne probs with it but she is still iffy about it. i guess cuz im only 18 and going on it when i have a uncle who has cd also and he is just on pentasa and has been for years.
 

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