Remicade Club Support Group

Crohn's Disease Forum

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Hi thebeadinglady :)
Sad.....does that mean its your first flare-up while being on Remicade ? Was hoping remi would chase the flares away :-/
 
A quick question for y'all.
I don't know if I have a cold and a fever but all day today (after feeling sick-sore throat, all that fun stuff this morning) my skin is SUPER sensative. Usually this means I have had a fever. Even the softest things hurt my skin.

Even though I'm assuming it's fever related should I still contact my doctor? I'm 5 days into Remicade and nervous that I'm starting to get sick this soon.
 
Hi! My name is evan I just joined this forum yesterday been diagnosed with chrons for about 3 weeks now. I am on remicade it worked really well. from night to day after it. actually having real BM! Joining the club!
 
So, just got my first remicade treatment today. Haven't gotten any side effects except for feeling slightly tired. If I'm gonna get any side effects, when should I see them?
 
Hi cooro my doctor said only side affect beside maybe allergic reaction to the medicine which would result in maybe a rash or fever was the suppressed immune system
 
Banhammer said:
Hi cooro my doctor said only side affect beside maybe allergic reaction to the medicine which would result in maybe a rash or fever was the suppressed immune system
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Oh, so I should have noticed something by now if I was going to experience a side effect?
 
yes I believe so :) I don't know much as I was just diagnosed but I can give you what lil information I have and I know that they always asked me if I got pain anywhere and checked me for a rash
 
Cooro said:
Oh, so I should have noticed something by now if I was going to experience a side effect?
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I believe that an immediate side effect is more of an allergic reaction to the med. It could happen during any infusion, but less likely once you have a few done already (don't quote me on that, I am trying to remember what I have read.)

Other side effects vary greatly, and could happen at any time. Tomorrow, 3 weeks from now, anytime. Some people have a delayed reaction too.
 
Hi everyone, I am new here and am in need of some much needed advice. I will probably be going on Remicade very soon and I was wondering if this is something that I should let happen or maybe choose a different drug? Is there anything I should know that my doctor isn't telling me about the drug? Does it hurt when you get the injection? What are some of your thoughts about it? Anything would help:)
 
Had my second infusion today. I have a new pain in my lower right quadrant. It kinda hurts to mash on it. I sure hope it is not an abscess...
 
Hi all I had my second infusion today. So far no side effects. Hoping theat it will start working and I can get some relief....
 
:bigwave: I received my second infusion 4 weeks ago Friday, and I have seen improvement over the weeks. It's slow but I'm getting less pain, and I hoping that after the third one on Friday, it will send me into remission....:thumright:

Hope everybody else has success with their treatments.

:goodluck:
 
A week in, it gave me my life back. But now, I'm slowly getting pain again... :( I'm wondering if my body already made anti-bodies to it or what. I wait for my second infusion this 18th and see if that does anything productive.
 
@ Skellington and welcome to our forum.
There are tons of usefull info on the remicade thread. remicade is an anti tnf drug with great results for 80% of the people. like everything else, there is no good without bad.
 
Hi my name is Scott started remicade on feb 09 2010 still on it have no side effects so far just wanted to say hi and join the club.
 
Skellington said:
Hi everyone, I am new here and am in need of some much needed advice. I will probably be going on Remicade very soon and I was wondering if this is something that I should let happen or maybe choose a different drug? Is there anything I should know that my doctor isn't telling me about the drug? Does it hurt when you get the injection? What are some of your thoughts about it? Anything would help:)
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As far as your question about hurting...this is an IV infusion, so the only 'hurt' is the needle stick when they start the IV.....once you are in a routine, the actual infusion itself takes about 2 hours....I use that as 'down time' to relax.....and I usually go after a half day at work, then home.....

I am on a low dose (4 vials), and really don't have any side effects....in fact this past Monday after my infusion, I got my jair cut, did some window shopping, then went home and cut wood and ran the wood chipper for an hour or so!
 
Hey - new to the forum and joined the site with my husband who has suffered from crohn's since last Feb. His GI wants to start him on Remicade in the new year but we're a bit scared because we also want to try and start a family....has anyone conceived with their husband being on Remicade? any issues? birth defect?
 
Good luck to those of you that are just starting remicade when you first start it is a little scary. I think I've been on it since 1991 ,some times my vitals do go a little crazy. It has helped I just wish it would stop the pain.......
 
Has anyone ever started bleeding suddenly after a week of having remicade? I've been noticing blood in the stool and this is the first time I've really noticed blood since having crohn's.
 
Funny you should ask about blood in your stool. I started Remicade 6 weeks ago and about 2 weeks ago I seen blood, but it was bright red and I assumed I must have an internal hemorrhoid. Then I didn't see any until yesterday, the day after my 3rd infusion.

I'm going to see my gastro dr. this week and I will be mentioning it to him. Hope it's nothing serious. I have never seen blood before either.

What did you think it was from??
 
lseibert said:
Funny you should ask about blood in your stool. I started Remicade 6 weeks ago and about 2 weeks ago I seen blood, but it was bright red and I assumed I must have an internal hemorrhoid. Then I didn't see any until yesterday, the day after my 3rd infusion.

I'm going to see my gastro dr. this week and I will be mentioning it to him. Hope it's nothing serious. I have never seen blood before either.

What did you think it was from??
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I'm not to sure myself. I do have a few guesses though.

I know in the pictures of my colonoscopy, there was kind of like a spot that was really inflamed and leaking blood. Oddly, I never saw blood in my stool. Anyway, it might be that the inflammation was holding back some of the bleeding? That, or anal fissures that we can't feel but are bleeding. Just pure speculation.
 
Hi just wanted to post because I am going to start Remicade this Thursday. Everyone has already said that immediate side effects are pretty minimal so I hope that is the case and I can get into remission.
 
I had my second infusion earlier this week. The nurses usually use Ladicane before the needle-and the man who did my infusion first-I felt nothing. This time...it kind of hurt! The first time I got Ladicane-it formed a little bubble on the surface of my skin and this time I didn't notice anything.

Also-I've started going to the gym again and the machine kept warning me of a high heart rate. Even when I'm not doing strenuous activity-just walking up the stairs, I notice my heart beating stronger. Any one else had this. Other then that-I feel great! PLUS---no more prednisone! :applause:
 
Pete had his 3rd infusion today. Since he started this he is now a different man. Back to eating, more energy, no more accidents due to not making the loo in time etc. Do they stop the treatment when you go into remission? or is it ongoing? Deb
 
Hi all, new to the forum, but not new to Remi. Have been on it since 2003. The only unfortunate thing about it is I have to drive 125 miles one way to get the infusion. None of the hospitals, cancer treatment center, etc around here would help me at all. So off I go to the "big city" every other month. Usually have my treatment in the AM then Costco, lunch and home. If I am lucky, hubby comes with me, but that usually means we leave a lot poorer than when we arrived as he is simply convinced he has nothing better to do while I am in the hospital than to shop (Lowes, Home Depot, Cabelas...all the "guy" stores)

I went off Remi for about 18 mos and tried Humira...just didn't work as well.. Been back about a year now and haven't looked back. No reactions or anything. I am so happy with it. It gave me my life back.

Thank you Remicade!
 
boro deb said:
Pete had his 3rd infusion today. Since he started this he is now a different man. Back to eating, more energy, no more accidents due to not making the loo in time etc. Do they stop the treatment when you go into remission? or is it ongoing? Deb
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Generally you stay on it for life - as you can develop a reaction to it if you stop then start it again.....
 
:welcome: Blooddrama,

I have been on Remicade for 7 weeks, and I'm slowly getting better. Hope it works for you, I've read that many people are very happy with this med.

:goodluck::goodluck:
 
Hi guys. I will be getting my first infusion on Tuesday. My GI hasn't given me any pre-meds so I hope I don't have a reaction to it. Are any of you on Remicade without pre-meds? If so, how is it working out for you? And any advice for me on what to expect for my first visit?
 
:bigwave:Kslade,

I have been slowly getting better on Remicade, and I have never received a pre-med with my infusions, and I feel fine after I've gotten mine. I have good days and bad days still (meaning pain), but the pain I get now, is no where near the pain I was getting, and to me it's great so far! Good luck with yours....

:rosette2:


:goodluck::goodluck::goodluck:
 
lseibert said:
:bigwave:Kslade,

I have been slowly getting better on Remicade, and I have never received a pre-med with my infusions, and I feel fine after I've gotten mine. I have good days and bad days still (meaning pain), but the pain I get now, is no where near the pain I was getting, and to me it's great so far! Good luck with yours....

:rosette2:


:goodluck::goodluck::goodluck:
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Thanks for the reply. How long have you been on the Remicade for? What would a typical day without Remicade for you consist of, and what would one with Remicade consist of? (pain wise). I would like to try and get a feel for the difference that it can make, to make sure that the pro's outweigh the cons.

For my first few infusions I won't be going into work that day, but would like to be able to eventually do so. Do you think that would be possible? I work as a Pharmacy Technician if that helps you to understand what type of physical demand my job entails.
 
Hi kslade,
Assuming you dont get any negative response to the remicade infusion, whenever receiving the following infusions normally dont generate any side effects ( at least thats my experience )
As Linda writes I have too gradually become better and better since starting remicade in april this year, like her I havent had any pre-meds.
As for maintaining a job depends on how fast you respond to the drug, I wasnt dealing much with pain but extremely strange behaviour of my bm's - which need no further explanation when talking about work. Still have bad days but gradually getting better, something I thank remicade for. Hoping for further improvement
 
Hi! I'm a soon to be Remicade club member, but I'm scared of the side affects that I've read of and whether I will still be able to take care of my little ones and husband well. Any info of how the drug has helped/not helped you would be appreciated. And any information to help ease my worries.

Thanks!
 
@KSLADE - I usually schedule my infusion for AFTER work - I take a couple hours off - then I don't have to worry about headin in expecially if the clinic/Dr office is running behind.....I work in a physically and mentally demanding job - been here for 8 years now....

@DOMSMOM - remember not everyone has side effects - I am one who doesn't - been on Remicade now for @5 years - wait - I did get ~one~ side effect - I finally gained weight! ..... I have a 5 year old daughter at home and a husband -

The drug has literally given me a normal life.....other meds were working for shorter and shorter periods of time.....this is the longest I have felt 'normal' in a loooong time......
 
Had my third infusion today, bit quicker only 3 hours. All went ok only problem was my blood tests showed my ECR ? levels (inflamation markers in blood) had gone up from 12 to 44 mind you they started out at 106! Nurse told me nothing to worry about could be down to anything. My joints have been aching recently and my sis has had flu but in myself feel great, even managed to decorate hallway and kitchen !!
 
kslade said:
Thanks for the reply. How long have you been on the Remicade for? What would a typical day without Remicade for you consist of, and what would one with Remicade consist of? (pain wise). I would like to try and get a feel for the difference that it can make, to make sure that the pro's outweigh the cons.

For my first few infusions I won't be going into work that day, but would like to be able to eventually do so. Do you think that would be possible? I work as a Pharmacy Technician if that helps you to understand what type of physical demand my job entails.
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Kslade, When you asked of pain, before Remicade 2 hours after eating I really couldn't function most nights, just laying on the bed in pain. Now 7 weeks in my pain has gone from 8-9 to, some days of no pain to a 5-6. So, it's a huge improvement.

As for work, I used to work in a factory building car axles, I left that job, (but I could not have done that job with what I've been going through) and I am back in school full time. Good luck I know it can be very hard to stand all day when you're in pain.

:getwell::getwell:
 
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@uli For me right now, it's not so much about pain, it's more about running to the washroom after I eat, which has caused me to avoid eating while at work. I still get pain, but not nearly as much as I did before the Prednisone and Imuran.

@pasobuff As far as going to the clinic after work, I thought about that, but it just wouldn't work with the hours that I work. So I would either have to take a half day off work and just work a part day. As it is now, I don't get home till about 7pm everyday, and the clinic is out of town (1h away). There are closer ones, but with all the troubles and past experience with the doctors and such here in town, I opted to go out of town where the doctors actually listened to me over the past year.

@lseibert I’m glad to hear that Remicade has worked out for you. I hope that I am as fortunate as you. I will find out soon, and keep you all updated.

I'm very fortunate that a lot of my co-workers either have something similiar to what I'm suffering from, or know close family members/friends with the disease. So when it comes to numerous doctor's appointments and anything of the sort, they are completely understanding. I just don't like to leave them with all the work, I feel like I'm stranding them in a way.
 
I've been reading through a bit and have a couple of questions. If anyone could answer them that would be great!

1. How has Remicade affected your immunity? Do you get sick easily? And what do you do when you get sick? I have 2 little ones who are in church nursery 2x/Sunday and there is always something going around...should I avoid it after the treatments?

2. How do you feel following a treatment? Do you need someone else to take you and pick you up?

3. What are the MOST common side effects?

4. How has it effected what your day-to-day life... ie. family life, social life, vacation planning etc.

5. What do you do during the infusion?

These are what I've been thinking about most right now...any info would be appreciated :)

Thanks
 
Hi Domsmom
My husband has just had his 3rd infusion.
1. Although coughs and cold about at the moment, Pete just avoided people who were coughing everywhere then stepped up the handwashing.
2. If it is your first infusion it is advisable that someone picks you up just incase any side effects. Pete didn't have any reaction at all but better to be safe.
3. Some people have an allergic reaction like rash etc.
4. Pete feels like a new person. Before treatment we couldn't go anywhere, he had no energy what so ever, not eating, pain and a walk to the garden gate would leave him exhausted.
5. He takes his ipod with him and a book. By the time the nurse has gone through questionaire and they do a swab for MRSA (in UK) time goes by.

Good luck
Deb
 
as said above, Pete had his 3rd infusion on Tuesday. Took 4 hours but that included waiting around afterwards as staff always go on the side of caution.
Again he is still feeling much better than a few months ago. He has had pain in his knee and ankle joint. Not sure whether this is just a coincidence. Toilet down to once a day, he is putting the weight back on but now I'm nagging him to watch what he is eating, his appertite is like a horse:ylol2: the cry of "what's to eat" is heard every 10 mins followed by looking in the cupboard.
 
So I had my first infusion the other day. Everything went pretty well, just have a few questions for you guys. While in was getting my infusion I didn't have any side affects that is until about 10 minutes before it was done. I started to get very tired ( the lady next to me was snoring ) and about 1 hour after the infusion I got a headache. Now those I'm pretty sure are common side affects but my question is did anyone experience tighness in the chest? I didn't start to experience this until today as well as muscle weakness.

The nurse said to go to he emerg if I had shortness of breath, chest pain etc but I don't have any of those that she listed. Has anyone else experienced tightness in the chest and know what it is or if I have anything to worry about?
 
Itchy

Hello,
I have had 5 infusions of Remicade and symptom wise my Crohn's is a lot better. I have a few issues though and would love to hear suggestions or experiences. I have found that I have lost a lot of hair in the shower etc. It seems to be getting worse. Also I get soooo ITCHY! Whenever I shower I have to take allergy pills to help with the itching. It has gotten so bad that I litterally scratch my skin until it bleeds. I don't know what to do!! Please help :(
 
New member of the club! He started 2 weeks ago, got round 2 yesterday. No side effects and only takes about 2 hours. Problem right now is that the immediate spectacular results don't seem to be lasting between infusions. Anyone else have that problem?
 
C-Rohns said:
Hello,
I have had 5 infusions of Remicade and symptom wise my Crohn's is a lot better. I have a few issues though and would love to hear suggestions or experiences. I have found that I have lost a lot of hair in the shower etc. It seems to be getting worse. Also I get soooo ITCHY! Whenever I shower I have to take allergy pills to help with the itching. It has gotten so bad that I litterally scratch my skin until it bleeds. I don't know what to do!! Please help :(
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Sounds like an allergic reaction. You should tell your doc about it. Do they give you benadryl before your infusions? If not, there is pre-meds that they can give you to help combat allergic reactions such as itching and rashes etc.

TheWifeUC said:
New member of the club! He started 2 weeks ago, got round 2 yesterday. No side effects and only takes about 2 hours. Problem right now is that the immediate spectacular results don't seem to be lasting between infusions. Anyone else have that problem?
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Sounds like he's just beginning and hasn't gotten his loading doses yet. I just got my first infusion on Tuesday. From what I understand their are a set of loading doses that you get. For me its week 0, 2, then one month later then every 8 weeks. I would wait until the loading doses are done and if he's still getting pain too often between the infusions tell the doctor. They could either up the dose or the frequency.
 
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1 - My husband and daughter seem to get 'sick' more than I do - although this past year I've had strep 2x (don't think it ever really went away the 1st time)....right now I have a head cold but am at work.....I was told by my GP (who is also a rheumy) to wash hands, stay away from those who are sick...I keep antibacteria gel at my desk and USE it!).....

2 - I usually feel fine after an infustion - go about my business...sometimes I get chills in the evening, maybe feel a bit tired...but I am usually low on B12 anyway (I get a shot at each infusion).....it doesn't really alter anything I do.

3 - Not sure as far as most common...I don't really seem to get any that are noticeable.

4 - Day to day life - has made it BETTER! I go on vacations, out and about etc.....the only concession is when we plan a vacation, I take into account when my next infusion is due and plan around that, or if I can't then I change the date of the infusion. Same thing with work - if I have something important that can't be rescheduled I'll change the date/time of the appt. Usually at work I'll NOt schedule anything for that Monday....might go back to Friday infusions though - longer weekend! lol


5 - I watch TV, rest, read a book, have lunch, do needlepoint.....
 
@C-Rohns!
I think you need to contact your GI - I was warned about the itching in the beginning of my infusions. Could be an allergic reaction.
 
@borodeb
@pasobuff
Thanks! Nice to know the little details :) I'm still nervous about starting it and can't seem to shake it. I'm looking into other options, but would like to be prepared for the Remicade. Is the IV on a pole or do you have to sit the whole time?
 
I am been on Remicade for about eight months now. I do not feel any better or worse after the infusions. I have also started Imuran with the Remicade, but feel the same. I am thinking about stopping all meds, but I have no idea if that would be a good idea. I have a feeling I'd be in the same position I am in now. In pain. I have had tests done, and they can't find any reason behind my pain...so maybe it's in my head?
 
AshleyElaine87 said:
I am been on Remicade for about eight months now. I do not feel any better or worse after the infusions. I have also started Imuran with the Remicade, but feel the same. I am thinking about stopping all meds, but I have no idea if that would be a good idea. I have a feeling I'd be in the same position I am in now. In pain. I have had tests done, and they can't find any reason behind my pain...so maybe it's in my head?
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How long have you been on the Imuran? I first started with Imuran, and I guess because of the nature of the drug it takes atleast 3 months to fully start to work. For the first couple of months I was still getting pain and diarrhea. If neither of them are working for you, and you've given them sufficient time to do so, I would contact your GI. Meds work differently for everyone. What may work for one person, might not for someone else. Maybe there is something else that will work for you.

I havent heard of anyone where both meds didn't work. Are they sure that what you have is CD or UC? Maybe you were mis-diagnosed? I know I was mis-diagnosed at the very beginning of everything that happened to me. They originally thought I had Acid Relux, then they thought I had Gallstones, then they came to the conclusion that it was Crohns after Antacids and the removal of my gallbladder didn't get rid of the pain.

Domsmom said:
@borodeb
@pasobuff
Thanks! Nice to know the little details :) I'm still nervous about starting it and can't seem to shake it. I'm looking into other options, but would like to be prepared for the Remicade. Is the IV on a pole or do you have to sit the whole time?
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The IV is on a pole, so you don't have to sit the whole time ie: If you need to go to the bathroom you can do so. Not sure about where you live, but I know that we sat the whole time, you weren't really offered to walk around or anything. So I would bring sufficient reading material or something to occupy yourself. They had a movie running at the place I was at which made the time go by faster and supplied reclining chairs for comfort.
 
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Are your white cells numbers normal? What about ESR rate? If you aren't showing signs of inflammation you may have an overly sensitive bowel in addition to Crohn's.

Have they tried you on Amtryptaline or Nortryptaline? These are antidepressant medications that also desensitize the nerves in the bowel. I had the same inexplicible pain and when my GI did a colonoscopy, he saw severe cramping and swelling begin when he introduced air and liquid, so you can imagine the pain I was in after eating.

He prescribed Nortryptaline for me; you can search these drugs on another thread. It finally gave me relief from such relentless pain; maybe you could mention it with your doctor. It also helps you sleep and takes the edge off; lots of Crohnnies here take it.
 
1. Since starting Remicade (about 2 months ago) I have been sick (runny nose, sore throat, stuffed up, fever, chills) about 3-4 times, but I was warned that my immune system would be down. There is not a whole lot that I can do when I am sick because if I'm not working I'm at school, so not much time to be sick.

2. I am pretty beat after treatment, but I am still able to drive afterwards. I just go home and snuggle up on the couch and do homework, and sometimes have a nap.

3. I haven't had many side effects, but my Crohn's has been coming on stronger than ever now, so they have to up my dose and have it more frequently (500mg, every 6wks) I have still been having terrible joint pain, to the point where I can't walk, and possible EN again.

4. Remicade so far for me hasn't been too bad about scheduling issues, I just know certain days that I can have it done and the ladies at the clinics try to accomidate me as much as possible :)

5. Since I usually react to every medication they give me benadryl and tylenol to reduce the chance of reaction, so therefore I usually sleep 3 of the 4 hours I am there. The ladies are great, always giving me a warm blanket and a pillow <3
 
BloodDrama said:
Had my first infusion today,
hi club? :ghug:
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Welcome to the club. I hope it works fast. My fistulas closed up by day 4 and I have been in remission since March 2010. I am getting my next infusion in a few days.

I notice some very minor GI symptoms a few days before my infusion. I may ask my doc to either A) give my another vial or B) move the frquency to every 7 weeks.

I noticed it the past 3 infusions.
 
Hunniebunny; I notice the cold thing too. I just take cold FX if I feel one coming on and it knocks it right out. Once of the 3 day cold FX treatments does the trick. Its awesome.

Some may say its a bad idea to take an immune booster while taking remicade, BUT I find for the short term it doesnt hurt, especially since you are fighting off something to begin with, so your immune system will likely attack the virus and not you. IME it has never made my GI symptoms worse and I have done it about 4 times since starting remicade in March.

I am not a doctor, but this is my own personal experience with cold FX.
 
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Typing this in my hospital bed right after my week 0 infusion. I was admitted because of abdominal pain and a fever and my GI doc insisted that we step up the medication (was on prednisone/pentasa but every time I tried to get off of the prednisone, I flared up). No allergic reaction, so far no complications, although the doc got me a bit nervous when he mentioned sepsis, pneumonia, and a handful of severe reactions that could happen, but he followed up that they're very rare.

Here's to hoping it works as well for me as it has seemed to for the rest of you all~
 
I had a different thread going with questions regarding Remicade and Imuran being used together. I see now that several of you have posted your on both. My son is going to have this second infusion this week and needs to let the doctor know if he is willing to add either imuran or 6mp to the mix. He is tapering off prednisone and now that he hit 10mg he is having some return of symptoms, i.e. looser stool, more frequent. I guess I have my answer that it is okay to use both. She referred us to a Sonic trial that shows no adverse events combining them. I think he should try the imuran first and see how he does with it. Fingers crossed he can get some relief.
 
1. How has Remicade affected your immunity? Do you get sick easily? And what do you do when you get sick? I have 2 little ones who are in church nursery 2x/Sunday and there is always something going around...should I avoid it after the treatments?
I do pick up stomach bugs and colds a little more often, but its usually at the same time as everyone else in the house and my recovery is not any slower than everybody else. So in that aspect, I think I am ok.

2. How do you feel following a treatment? Do you need someone else to take you and pick you up?
A little more tired during that day. I dont really notice anything else.

3. What are the MOST common side effects?
Awesomeness. Seriously, I dont feel any side effects. Also my psoriasis on my scalp has cleared up. More awesomeness.

4. How has it effected what your day-to-day life... ie. family life, social life, vacation planning etc.
It gave me my life back. I mean I wouldnt plan a vacation during the week my infusion was due, but I only need to worry about that every 8 weeks.


5. What do you do during the infusion?
I bring my laptop and play WoW
 
I saw my consultant yesterday and I'm starting my Infliximab treatment next Tuesday! Gotta go back two weeks later for another infusion and then four weeks after that for my third one.

Hopefully I'm on the road to remission!
 
kslade said:
So I had my first infusion the other day. Everything went pretty well, just have a few questions for you guys. While in was getting my infusion I didn't have any side affects that is until about 10 minutes before it was done. I started to get very tired ( the lady next to me was snoring ) and about 1 hour after the infusion I got a headache. Now those I'm pretty sure are common side affects but my question is did anyone experience tighness in the chest? I didn't start to experience this until today as well as muscle weakness.

The nurse said to go to he emerg if I had shortness of breath, chest pain etc but I don't have any of those that she listed. Has anyone else experienced tightness in the chest and know what it is or if I have anything to worry about?
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Hi, kslade,

I'm a brand new member of the Remicade Club & will introduce myself later, but just wanted to let you know that I did have tightness in my chest all day after my first infusion, which was 3 days ago. It went away the following day.

In my case, it felt just like the chest pain I've been feeling from stress (personal/work - details later) off and on over the past few months, except at the time I didn't feel stressed (probably because of the Benadryl). Probably foolishly, I didn't get it checked out (I have an aneurysm in my ascending aorta and need to be attentive to things like this) because I figured it was just stress. I did talk to my doctor about it the next day. I would definitely ask your doctor about it though, you don't want to mess around with chest/heart issues. In other words, do as I say, not as I do!

Have you had more infusions, and did you have the chest tightness again?
 
AuntieLili said:
Hi, kslade,

I'm a brand new member of the Remicade Club & will introduce myself later, but just wanted to let you know that I did have tightness in my chest all day after my first infusion, which was 3 days ago. It went away the following day.

In my case, it felt just like the chest pain I've been feeling from stress (personal/work - details later) off and on over the past few months, except at the time I didn't feel stressed (probably because of the Benadryl). Probably foolishly, I didn't get it checked out (I have an aneurysm in my ascending aorta and need to be attentive to things like this) because I figured it was just stress. I did talk to my doctor about it the next day. I would definitely ask your doctor about it though, you don't want to mess around with chest/heart issues. In other words, do as I say, not as I do!

Have you had more infusions, and did you have the chest tightness again?
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I will be going for my second infusion on the 10th of November, so next week. It eventually went away as did the other side affects that I was feeling. I wonder though.. Cause after the infusion I felt tired and like I mentioned above I had tightness in the chest, headache and a little bit of dizziness, but it all went away after a day or so and I felt great. Now I am starting to get some diarrhea back and I vomited just the other night again. I am wondering if my body is saying it`s ready for another infusion. I will for sure mention the side affects once I see my doctor on the 17th. By then, I`ll have two infusions under my belt and will hopefully have a better understanding of everything I`m feeling.

I still don`t quite understand this whole `loading dose` thing. Does this mean that we shouldn`t expect any drastic changes until we`re through all the loading doses?
 
I just had my 4th Remicade infusion and they had to increase the dose, and I haven't felt this sick in a long time! Is it common to feel really nauseated/dizzy after an increased dose?
 
Going for my 6th infusion on tuesday - never had any abnormal feeling after getting it.
For that I'm very happy :)
 
i started my first infusion 2.5 weeks ago and am feeling much better now. My doctor is monitoring me through blood work and I currently have a highly abnormal liver function. I stopped 6MP about four days ago and have had to stop remicade until we figure out for sure what is causing the abnormality. Has anyone else every had something like this because my doctor and his colleagues have never seen or heard of this due to remicade only?
 
I had the same thing happen. My ALT level was 150; my GI gave me a lower dose of Remicade at further intervals for a few months to trick my liver into accepting it. I'm thinking it's the 6MP AND the Remicade together; that's alot for the liver to handle, for sure.

Because I have a tendancy for meds to raise the liver levels, I totally gave up alcohol, and Tylenol. I drink only water with lemon; I don't know if this matters but it makes me feel better. So far everything's worked out, after a few more treatments everything leveled out. Also, for some reason switching from pills to injections of MTX seemed to help,too.
 
So after a talk with my doctor, she has ordered to premed me with Benadryl and Tylenol for my next infusion this Wednesday due to a long list on side affects. Do they give it to you orally or intravenously? I should of asked when I was on the phone, but didn't think of it till now. I have a very slow metabolism and it takes like 2hrs for anything to start working.. :/
 
In my son's case he had no pre meds before his first infusion. He had no side effects at all. Two week later for the second infusion they told him to take one Clariton and two Tylenol an hour before coming in. That is now the routine. He had no side effects either time. Even though his prednisone was tapered down to just 5mg this week, he is only having an increase in bowel movements but formed and no mucus or bleeding anymore. I hope this means the Remicade is working for him! They are planning to also add Imuran after getting some new blood work results.
 
kslade said:
So after a talk with my doctor, she has ordered to premed me with Benadryl and Tylenol for my next infusion this Wednesday due to a long list on side affects. Do they give it to you orally or intravenously?
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They give you the meds orally, and trust me, they work fast enough!
 
hunniebunn88 said:
They give you the meds orally, and trust me, they work fast enough!
Click to expand...

I hope you're right, but anytime I take Tylenol on my own it takes forever to start working. Not even sure what the Tylenol is for? I said I got a headache, but would it be because of that? Or is it something that they prescribe with Benadryl for some reason?

I go tomorrow so we'll see how it goes :)
 
I'm officially part of the club now.

Had my first infusion today, took 2 hours.

Got another one now in two weeks time, looking forward to it. :)
 
I have already got into contact with my coordinator regarding this, who in return will be contacting my doctor today, but I just wanted to post here to see if anyone else has experienced anything similar to this.

So everything was going well, I had my first infusion 2 weeks ago, and go for my second one today. I started to notice that after about the first week and a half my side affects started to slowly comeback (diarrhea in my case). Just figured it was because I was due for my next Remicade infusion. Then this morning (writing this while I'm in severe pain to keep my mind off it). I woke up in a considerable amount of abdominal pain. The pain actually woke me up. Now the thing is, that I haven't felt pain like this since BEFORE I started all my medication. So that would be Imuran and Prednisone. Has anyone else experienced anything like this?
 
@kslade, I think the decline between doses is common during the Loading Dose phase. My husband had his 1st infusion while in the hospital on a Tuesday. He was released that Friday because he was so dramatically improved. By the following weekend, he about as bad as he was when admitted. He was so busy with work trying to catch up what he had missed that he didn't contact his doc about the decline. Fortunately, we ran into her at the elevator while going for Round 2. She took one look at him and told us she was readmitting him. So he got the infusion while they got his room ready and we were there for 4 more days. That was 2 weeks ago yesterday and we've got 2 weeks until Round 3. Our existence is entirely centered on keeping him well enough to stay out of the hospital while we go through the Loading Doses. Long story short, definitely talk to your doctor especially about the pain, but no you're not alone in experiencing a dramatic decline between infusions. Good luck and healing thoughts heading your way!
 
TheWifeUC said:
@kslade, I think the decline between doses is common during the Loading Dose phase. My husband had his 1st infusion while in the hospital on a Tuesday. He was released that Friday because he was so dramatically improved. By the following weekend, he about as bad as he was when admitted. He was so busy with work trying to catch up what he had missed that he didn't contact his doc about the decline. Fortunately, we ran into her at the elevator while going for Round 2. She took one look at him and told us she was readmitting him. So he got the infusion while they got his room ready and we were there for 4 more days. That was 2 weeks ago yesterday and we've got 2 weeks until Round 3. Our existence is entirely centered on keeping him well enough to stay out of the hospital while we go through the Loading Doses. Long story short, definitely talk to your doctor especially about the pain, but no you're not alone in experiencing a dramatic decline between infusions. Good luck and healing thoughts heading your way!
Click to expand...

Thanks for the reply. So my doctor has booked an abdominal scan because she thinks that it's either Pancreatitis or stones in my gallbladder ducts (I had my gallbladder removed about a year ago). I was finally able to get some sleep before my infusion today, but the pain has come back. Now I'm wondering if the pain ever left in the first place.

Can anyone out there that has experienced Pancreatitis let me know the side affects that they felt? This pain is pretty intense. I'm wondering if I should wait for my doctor to get the results from the Abdominal Scan which is scheduled for tomorrow morning or what I should do. I'm very terrified from what I've read about it on the internet.
 
tflock said:
i started my first infusion 2.5 weeks ago and am feeling much better now. My doctor is monitoring me through blood work and I currently have a highly abnormal liver function. I stopped 6MP about four days ago and have had to stop remicade until we figure out for sure what is causing the abnormality. Has anyone else every had something like this because my doctor and his colleagues have never seen or heard of this due to remicade only?
Click to expand...

I started 6MP and remicade simultaneously, and my liver tests started coming back abnormal (elevated ALT). I halved the 6MP dose and it resolved itself within a few weeks. It obviously could be the combo, but it could certainly also just be from the 6MP.
 
Son is 13yrs w/Crohns talks of remicade treatment abit concerned

My Son is now 13yrs he was diagnosed Aug 2009 with crohns in the ileum area with uclers. We started with pentasa with encort until december then pentasa and predinsone until Aug 2010, currently on pentasa and azathioprine with now talks of starting the remicade. I am wondering about the warnings about young boys developing deadly lymphoma. Does anyone have info for me on tests that I should inquire about. I am also wondering about developing antibodies to this med...what will he do when he gets olders etc...
 
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Wilkbot said:
My Son is now 13yrs he was diagnosed Aug 2009 with crohns in the ileum area with uclers. We started with pentasa with encort until december then pentasa and predinsone until Aug 2010, currently on pentasa and azathioprine with now talks of starting the remicade. I am wondering about the warnings about young boys developing deadly lymphoma. Does anyone have info for me on tests that I should inquire about. I am also wondering about developing antibodies to this med...what will he do when he gets olders etc...
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I wouldn't really worry too much about worrying about him developing antibodies. I an infusion nearly 10 years ago and then had 3 more in 2005. The first one of those went fine, but then in my second, I went into full blown anaphylactic shock suddenly which was scary. But the reason why you have it in the hospital is because they are equipped to deal with these things. They stopped my infusion straight away and gave me antihistamines via iv. They started the infusion again and I was fine. The next one I had they gave me antihistamines via iv again and I went into anaphylactic shock again, although not as bad. Again, they gave me more antihistamines and I finished the infusion.. albeit a little drowsy from the antihistamines.
 
Well not sure if that sounds good or not, but I take it you feel better than before? My understanding was that this was a form of treatment like every 6 weeks but for how long I'm not sure.....Your treatment seemed to be once 10 yrs ago than 5 yrs ago you received 3 treatments with allergies to medication, and you have been feeling good currently.
I am hoping too for a long remission but it seems that a lot of people have problems with there second around of treatment. It's because of my son's age I guess do I get the treatment now and hope for the best for later relapses or hold off until absolutely necessary.

Thanks for your reply
 
Well what happened was, it was REALLY new when it came out and cost £17,000 per treatment. Well not for me, personally, because health care is free here. So I had one infusion and then my consultant got in trouble for giving it to me because it cost the hospital a lot of money. It worked really well but I was unable to follow it up with another infusion.

Then, the next time I had it, it worked well but the effects wore off before my next treatment which I THINK was 2 weeks later. So the cost to the department was high just to keep me feeling well for just over a week. Plus it could of made my strictures worse.

In regards to your son, I say it was really worth the try. I really did feels like a whole new person the day after the infusion. It was just a shame that I couldn't of carried on with it the first time I had it.

Good luck! :)
 
Well I am no longer a member of the club. I had one infusion and my liver functions spiked to 16 times the normal function. I still feel great and inflammatory markers are normal. I unfortunately cannot stay on Remicade due to the possibilty of liver failure. Moving to Humira next.
 
I'm here to join the club! I started my Remicade infusions about 4 years ago, and things are going generally swell. I've had some scares (thought it stopped working, but it just happened to be a particularly strong flare up) but overall IV therapy is the best treatment I've gotten so far. The only problem is, I feel great for 6-7 weeks after having it, but that final week before my next infusion I feel like death. I haven't had a chance to read through the whole thread yet, but does anybody else get this?
 
Hello everyone,, i have had crohns since 2008 had one surgery back in september 2009 didnt go so well or help me. I have tryed the remicade, humira and the cizima nothing is helping me so now i dont know what to do... The crohns is located in my small intest
 
Silent Lunch said:
I'm here to join the club! I started my Remicade infusions about 4 years ago, and things are going generally swell. I've had some scares (thought it stopped working, but it just happened to be a particularly strong flare up) but overall IV therapy is the best treatment I've gotten so far. The only problem is, I feel great for 6-7 weeks after having it, but that final week before my next infusion I feel like death. I haven't had a chance to read through the whole thread yet, but does anybody else get this?
Click to expand...

Yes, that is very common. Let your doctor know because they can adjust the dose/frequency to suit you. They can have you go every say 7 weeks instead of every 8.
 
Hi, I'm officially joining the Remicade Club now. Wheeee! Here's my experience with Remicade so far, for other newbies who might be interested:

Had my first loading dose at my doctor's office 2 weeks ago, and it went pretty well. They gave me Tylenol pills first, then Benadryl through an IV, then a steroid through the IV, then the Remicade. It took 5 hours, but I was prepared for that so I didn't mind. (I brought a book, a graphic novel, my laptop, and Sudoku, but ended up just surfing & textingwith my iPhone and dozing on and off.) The biggest problem was that the needle infiltrated 3 times in 3 different locations (inside left elbow, back of left hand, back of right hand). I hope I'm using the right word here; what happened, if I understand it correctly, is that the needle went all the way through the vein and started putting the Remicade into the tissue on the other side of the vein. Each time the area swelled up a bit and it hurt, but not badly. They had to take the needle out and move it to another part of my arm/hand, which was kind of a pain.

Afterwards I was a little more dizzy than usual and out of it, maybe from the Benadryl, and I probably shouldn't have driven myself home. The rest of the day I was extremely exhausted (too tired to walk 4 blocks to my favorite cupcakery - that's extreme for me!), had a headache and chest tightness/pain. Didn't feel well enough to do anything the rest of the day, just lay on the couch. For the next few days I was okay in the morning, but in the late afternoon all my energy would vanish and the headache would return. I could still work, though. A few days after that, I was fine and still am.

2nd loading dose is tomorrow morning. This time I am having a friend drive me.

Good luck, other newbies! (And oldies...)
 
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i am going for my 7th infusion of remicade on DEC 29th,they have doubled my dose, felt ohhhhh so tired for a week after last infusion,has anyone experienced this?
 
AuntieLili said:
The biggest problem was that the needle infiltrated 3 times in 3 different locations (inside left elbow, back of left hand, back of right hand). I hope I'm using the right word here; what happened, if I understand it correctly, is that the needle went all the way through the vein and started putting the Remicade into the tissue on the other side of the vein. Each time the area swelled up a bit and it hurt, but not badly. They had to take the needle out and move it to another part of my arm/hand, which was kind of a pain.
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How did they find out that it wasn't going into the vein anymore? Did you have some type of symptom?
 
Yes, a small area of skin near the needle swelled up, sort of like a bubble. It hurt a bit, more if it was touched. The nurses were checking on me every few minutes and they spotted the first one. Once I knew what it was, I called for them the 2nd & third time it happened.

The swelling/bubble went away a few minutes after they removed the needle.

Had my 2nd dose today and it went fine. No infiltrations this time!
 
AuntieLili said:
Yes, a small area of skin near the needle swelled up, sort of like a bubble. It hurt a bit, more if it was touched. The nurses were checking on me every few minutes and they spotted the first one. Once I knew what it was, I called for them the 2nd & third time it happened.

The swelling/bubble went away a few minutes after they removed the needle.

Had my 2nd dose today and it went fine. No infiltrations this time!
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The reason I ask is because during my last infusion the entry point started to hurt near the end, like pretty bad. I wonder if the same thing happened to me... It was sore when I moved my hand around with the needle in it, when I had about 30mins left of my infusion. It looks like their was a razed piece of skin or maybe it was just from the needle in there, but it was REALLY tender and sore. Afterwards, it looks like a bruise kinda.
 
Kslade,

Sounds like it might have been. Did the raised skin go away after an hour or so? I guess your nurses didn't notice or maybe only noticed at the end when it didn't matter. Did you tell them it was hurting and if so, what was their response? Did you press on the raised skin? On mine, it was kind of mushy (pardon my advanced medical jargon).

Was the raised area bigger than, say, a dime? If it was smaller, then maybe it was irritation or inflammation from the needle entry point? (I have no idea if this even happens, just a guess.) But if it was infiltrating for 30 minutes I would think there would be a noticeable, bigger-than-a-quarter sized swelling, and quite a bit of pain. (Just a guess, I don't really know anything beyond my experience.)
 
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I've had infiltrations before from Ivs....the skin will raise, look like swelling - which basically it is, but 'man made'.

I sometimes get a little irritation at the IV site near the end of the infusion too.

My next appt is Dec 6th - I get to find out how they pre-med with the benadryl (IV vs. pill)- oh joy.....hoping I'm ok to drive the hour home after!
 
AuntieLili said:
Kslade,

Sounds like it might have been. Did the raised skin go away after an hour or so? I guess your nurses didn't notice or maybe only noticed at the end when it didn't matter. Did you tell them it was hurting and if so, what was their response? Did you press on the raised skin? On mine, it was kind of mushy (pardon my advanced medical jargon).

Was the raised area bigger than, say, a dime? If it was smaller, then maybe it was irritation or inflammation from the needle entry point? (I have no idea if this even happens, just a guess.) But if it was infiltrating for 30 minutes I would think there would be a noticeable, bigger-than-a-quarter sized swelling, and quite a bit of pain. (Just a guess, I don't really know anything beyond my experience.)
Click to expand...

No it wasn't bigger than a dime. Infact, it was pretty small. I would say smaller than the diameter of a straw. It was just pretty painful. Hopefully it was just irritation from the infusion. Next infusion if it happens again, I will mention it to the nurse that is their just to make sure.

pasobuff said:
My next appt is Dec 6th - I get to find out how they pre-med with the benadryl (IV vs. pill)- oh joy.....hoping I'm ok to drive the hour home after!
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You're going from benadryl IV from pill? Or the reverse? I'm currently on benadryl in pill for as a pre-medication. It takes almost an hour to kick in on me. How come they are switching you?
 
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Quick question: Remember how I was bragging I had no side effects. Well I think I was wrong about that. Every 4-6 weeks I get this "stomach flu". I thought it was a stomach bug, but then I started noticing nobody was else getting it. Not my husband, not my daughter, not my friends. It comes on so sudden. No vomiting. The abdominal cramping is so bad. I try to go to the bathroom but not much happens because I dont get diarrhea really either. It always starts in the evening. I get bad abdominal pains, the sweats, and I even get a little shaky. By the morning I am 100% better albeit tired from a terrible sleep. I take tylenol, pepto, immodium, and gravol, just about everything in my med cabinet to stop it, but its seem to have to run its course.

I initially thought it was bad luck and I was picking up stomach bugs, but now I am starting to think its a remicade side effect. Like just for a day my body decides it hates remicade and then goes back to normal. Does anybody else get this?

I would like to add its not like my crohns pain, which is more nagging, searing and chronic. This is more acute sharp cramping stabbing pains. Its almost unbearable. I dont want to move because the more I move the more it hurts. If I could move I would make it down to the ER for painkillers better than tylenol.
 
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kslade said:
You're going from benadryl IV from pill? Or the reverse? I'm currently on benadryl in pill for as a pre-medication. It takes almost an hour to kick in on me. How come they are switching you?
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Nope - I'm going from NO pre-meds to tylenol/benadryl pre-meds......

I'm going on them due to the danged rash I got this past spring - which has not yet totally cleared, although it is about 80% better!....my doctor is not totally convinced it didn't have anything to due with the remicade.......
 
I'm thankful that I'm still doing very well after starting Remicade Sept. 3, 2010. I have been slowly getting better since I started and have had no side effects. Sorry to hear some have gotten bad side effects and I'll keep you posted if there is any change.
:goodluck:
 
pasobuff said:
Nope - I'm going from NO pre-meds to tylenol/benadryl pre-meds......

I'm going on them due to the danged rash I got this past spring - which has not yet totally cleared, although it is about 80% better!....my doctor is not totally convinced it didn't have anything to due with the remicade.......
Click to expand...

I had a ton of side affects as well, and now even with the Benadry and Tylenol I have a pretty sore throat, and have had for the past week or so. It's not like your typical sore throat though. It seems to come and go and when I have it it feels like my throat is swollen.

Has anyone else experienced/heard of this? I contacted my GI she said that I should go to the walk in clinic, but here it could take up to 7 hours to get in to see a doctor there. Don't really feel like waiting that long just for a sore throat lol
 

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