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Remicade Club Support Group

lseibert

lseibert

Location
Utica Michigan
I wanted to know if anyone has gotten a rash on their face from the Remicade? I'm due for my 4th infusion Friday, and I'm getting a rash on my face and chest. It doesn't itch, it's just red and flaky.
 
lseibert

lseibert

Location
Utica Michigan
Thanks Paso, I did call him and he said to take 20mg of Prednisone and a Benadryl. I don't know why, but I have really bad pain in my right side. I have been feeling great for 2 weeks, I'm never taking Benadryl again!!!!!!!
 
K

kslade

lseibert said:
I wanted to know if anyone has gotten a rash on their face from the Remicade? I'm due for my 4th infusion Friday, and I'm getting a rash on my face and chest. It doesn't itch, it's just red and flaky.
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Yes! I got that after my 3rd infusion. My whole face was red, but wasn't itchy. It went away after a few days though. Did yours go away? I will be mentioning it to my doctor this Monday when I see her. Your doctor told you to take benadryl and prednisone? I am already taking benadryl and I still got that rash.. Not taking prednisone though.

Did he tell you what it was?
 
U

uli

Hi Linda,
I wouldn't call mine a rash - however my skin has gotten at lot more sensitive and can appear with red rash looking areas on my face, chest and arms when exposed to heat - especially coming out of the shower. A normal moisturizer will normally do the trick.
 
lseibert

lseibert

Location
Utica Michigan
Kslade and Uli,
I will be talking to him on Tuesday. I got my infusion yesterday and they gave me benadryl with it when I started to itch. My rash looks better also so I guess everything's ok, it just scared me that I would be able to get the Remicade anymore....:)
 
K

kslade

lseibert said:
Kslade and Uli,
I will be talking to him on Tuesday. I got my infusion yesterday and they gave me benadryl with it when I started to itch. My rash looks better also so I guess everything's ok, it just scared me that I would be able to get the Remicade anymore....:)
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This kinda scares me, cause I am already taking Benadryl as a pre-med before my Remicade infusion. The only thing different this time is that I'm no longer on Prednisone. Not sure if that would cause such a reaction or not. I will be talking to my Specialist on Monday. I will post with the results once I know.
 
J

julesinfrance

constant sore throat

hi there.. I had one injection of Humira and 10 days after developed a rash, had severe vomiting and a horrendous headache. my doctors took me off this and i am now on Remicadeand have had three infusions. Although Ive had no major allergic reaction, my throat is constantly sore aswell which doesnt sound major but it does wear you down when its 24/7 and makes you feel generally unwell. The question is, is it the chrohns or the remicade doing this?
 
K

kslade

julesinfrance said:
hi there.. I had one injection of Humira and 10 days after developed a rash, had severe vomiting and a horrendous headache. my doctors took me off this and i am now on Remicadeand have had three infusions. Although Ive had no major allergic reaction, my throat is constantly sore aswell which doesnt sound major but it does wear you down when its 24/7 and makes you feel generally unwell. The question is, is it the chrohns or the remicade doing this?
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I've had sore throats as well. I would make sure that it's not something like strep throat, and if it's not that, it's the Remicade. I would just mention it to your doctor when you see him/her next.
 
2thFairy

2thFairy

Joined the club today with my first infusion of Remicade. Now it's the waiting game to see if/what anything happens. At least I've got a lot of reading to do in the meantime! Ha!

Glad I've got you folks to fall back on with my questions and concerns. :)
 
O

OverCD

Joined the Remicade club yesterday after having my first infusion. I'm hoping for relief from joint pain and healing of fistulas. Next infusion is on the 29th December :)
 
hunniebunn88

hunniebunn88

joshuaallice said:
so starting remicade this thursday:) anything crucial i need to know about the infusion?
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The most important thing for me is to dress comfortably and have some type of entertainment.
If at all possible be in yoga/jogging pants and a nice warm hoodie, if you are in a cold climate (for some reason I am always so cold during the infusion)
When I was in school during remicade, I always brought my laptop to get some homework done and to listen to music. But most of the time I fell asleep from all the medications that I was given.
And until you experience how you feel afterwards, get somebody to pick you up. And if you feel fine afterwards, then you know for the next time.
Good luck!
:hug:
 
G

guest3324

hunniebunn88 said:
The most important thing for me is to dress comfortably and have some type of entertainment.
If at all possible be in yoga/jogging pants and a nice warm hoodie, if you are in a cold climate (for some reason I am always so cold during the infusion)
When I was in school during remicade, I always brought my laptop to get some homework done and to listen to music. But most of the time I fell asleep from all the medications that I was given.
And until you experience how you feel afterwards, get somebody to pick you up. And if you feel fine afterwards, then you know for the next time.
Good luck!
:hug:
Click to expand...


Thanks:) im very excited
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Holy crap! I have posted 89 times in this thread. I had my 15th infusion today! I am still at 8 weeks apart, and 400 mg.
MY NURSE TOLD ME THAT I HAD A DEMI MOORE LOOK GOING ON!!
Yes, I just shouted that. I think I love her, and I might request her next time too! (giggle)

I had to sign a waiver saying that I understand the risks of Remicade. They also had me wear an allergy identification bracelet, and I've never had to do that before. Like, was I not allergic to amoxicillan the other 14 times? Hospitals make me wonder..

Anyhoo - yay Remicade!!
 
2thFairy

2thFairy

I'll be having my third infusion in two weeks. I'm still not having any benefits, but luckily no adverse effects either. Still got my fingers crossed that this is going to work!
 
D

danielleprice

Hi everyone, not been on for ages!
I had my first infusions yesterday, feeling abit better but hoping for more! Go back in for my 2nd in 2 weeks! Its a long day but i do like people watching so that helped and also all the nurses were fab!!

Just wanted to ask if anyone has been on it and been pregnant?????

I get married in May and want to start a family ASAP after that.

Danielle xxxx
 
L

Lydia

danielleprice said:
Hi everyone, not been on for ages!
I had my first infusions yesterday, feeling abit better but hoping for more! Go back in for my 2nd in 2 weeks! Its a long day but i do like people watching so that helped and also all the nurses were fab!!

Just wanted to ask if anyone has been on it and been pregnant?????

I get married in May and want to start a family ASAP after that.

Danielle xxxx
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Its pregnancy category B, and considered low risk for pregnancy. It does cross the placenta after about week 20 of pregnancy. Many doctors plan the last infusion about 6-8 weeks before the baby's due date so they baby is born with very little medicine in its system. They then give the mother in infusion right after the baby's birth. Flaring during pregnancy is far more risky. Its also safe to breastfeed as the molecule is so big it does not pass into breastmilk (although very little doctors are wise to this fact yet).

I have not taken it while pregnant but I am trying to conceive and I will take it during my pregnancy when I get pregnant. I got the OK from my GI to take it during pregnancy and breastfeeding.
 
H

HockeyChick89

Hey guys!
Yay a club! I've been on Remicade since March 2006 due to a horseshoe abscess...because I was technically a pediatric patient I started on a pretty low dose every 8 weeks...but I developed arthritis related to my Crohn's disease so they bumped me up to every 6 weeks...then once I turned 18 I went to 5mg/kg which worked until about October when I had a huge flare where I had my last surgery which still hasn't been able to get under control so they've upped my dose to 10mg/kg every 6 weeks as a last ditch effort to make this stuff more effective...I get my next dose on Tuesday!

cross fingers this stuff works again! I've sworn by it for so long now I don't know what I would do without it.
 
S

sammy

Hi everyone!
I'm new on here but I have been reading through the forum for a couple weeks now, since before my first Remicade treatment. I went for my second treatment today and three times (even after recieving steroids) broke out in a rash so they had to stop the treatment. They gave me benedril and I just about wanted to die. I have already been on methotrexate and 6mp. Both helped me in the past but haven't done anything for my flare up now. I get terrible stomach pains and cramps during the day and it makes simple things difficult. My doctor is considering whether or not I am going to try again with the Remicade, and I was wondering if the rash/possible allergic reaction is really a big deal? He says that Remicade is the most successful treatment, so where do I go from here?
 
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Nytefyre

Nytefyre

Hi Sammy! and welcome! It sucks that you are having a reaction to Remicade. I know it can be stressful. There are other meds, however, if Remicade will not work for you. There is Humira and Cimzia and Tysabri. There is also a study drug called Ustekinumab, if your doc can get you on it. Those are the biologics (there may be more). So, you do have some options, at least. Good luck. I hope you get to feeling better!

Oh, there is a Your Story subforum. You should introduce yourself. More people may be able to offer help and support! :)
 
hortoncj

hortoncj

I'm new to the club! :)

I'm 23 years old. I was diagnosed with Crohn's at 15, and started Remicade at 18. It was the only thing that really worked for my symptoms, and it's been great. I did start at 5mg/kg every 8 weeks, but after moving and switching insurance companies, I had to go a few extra weeks without it... Which resulted in me having to move up to 10mg/kg Q8wks.

I love the stuff! :)
 
A

AmyWooden

Hi everyone! I have just scheduled my last Remicade infusion. Its efficacy has reduced in the past year for me and I'm going to start on a trial of Prochymal. I need to be off Remicade for 90 days beforehand. Hopefully this next step will be the one that really works for me.

I wish you all the best on Remicade. It's been very good to me despite this last year. It got me off steroids and that was no easy task!

Take care - Amy
 
M

Max's Mom

Hi! My 10-year-old boy has been on Remicade for 9 months now and he's doing great. The first treatments were tough, they had to hold him down because he was curled up to a ball from being scared. But now he takes it like a champ. We just stopped the 6-mp. Our GI wanted him to stay on it, but I was too worried about the risks. I hope the Remi will work for a long time. He can't be on prednisone again, because he ended up with a seizure from it. This disease sucks,we need a cure,soon. Are any of you guys planning on looking into the stem cell transplant?
 
A

AmyWooden

Hi Max's Mom! I'm very happy to hear that your son is doing well on Remicade. I did very well on it for many years. Unfortunately it has recently stopped working for me during my last flare. I will be joining a Prochymal stem cell therapy phase III study at Mt Sinai this June. It sounds very promising and I am hopeful. You will find a couple people on the forum who have gone through stem cell transplant with great results. Good luck to you and your son!
Amy
 
M

Max's Mom

Thanks for writing back Amy.I was wondering,is "your" stem cell therapy a temporary treatment or a cure? Is it chemo? For how long did Remi work for you?
 
A

AmyWooden

Max's Mom - Prochymal is a stem cell therapy - stem cells harvested from healthy donors and infused. Because it doesn't involve using my own stem cells, as in a stem cell transplant, I won't need chemo to wipe out my immune system. It's not a cure, and it's still in trial phase, but the results are very promising. I spoke with a study coordinator briefly about it and she told me that Osiris, the manufacturer, does have a compassionate care program meaning if I do well on it and nothing else works I can continue. When I asked how often I would need it if I do continue she said "whenever you feel you need it." I will meet with a study doctor in May for evaluation and I'll have more answers then.
I started Remicade in 2005 and stopped in 2007 because I felt I didn't need it anymore and I was tired of having to get infused. Big mistake. After flaring about 9 months later and the prednisone not helping as much as in the past (it was always by go-to, never-fail drug) I went back on Remicade in January 2010. I had an anaphylactic reaction because my body built up immunity against it. But with pre-meds (methylpred and benadryl) I have been able to safely continue. Unfortunately it hasn't worked as well for me as it did the last time. So, if I can give any advice it would be to stay with what's working.
I hope this helps!
-Amy
 
A

AmyWooden

Hey everyone! I'm happy to announce I just had my last Remicade infusion today. You've been so helpful on this forum and I'm sure I'll see you around others ;)
 
K

KimchiiFiend

Boarding the Remi train. Had my fourth successful infusion Wed. I slept thru most of it, with a few interruptions of the machine alarming me my BP dropped low a few times.

This medication got me out of the hospital and had me feeling better the next day after the first infusion. I think it very well saved my life. I am very thankful to Johnson and Johnson who are picking up the medication cost for one year. Without them there's no way I'd be on this now. Let's hope for remission soon! :D Whee!
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Getting infusion #16 right this very second. Whoop whoop!
I wonder if there is a prize for infusion #100?

Dear Remicade,
Please keep working, thanks.
Love,
MBH
 
2thFairy

2thFairy

Hey there MBH! Enjoy your next 2:30 hours..

I may have actually had a hint that Remicade was working two weeks ago. It lasted for a week. I still have two weeks to go before infusion #4. I'm going to see if they will increase the dosage. I'm frustrated, but very encouraged by the large number of positive responses from people here.

I hope it's a good prize. Something with glitter on it... yeah!
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
2thFairy said:
I hope it's a good prize. Something with glitter on it... yeah!
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Ha! I got home and my husband had the kids pick me out some flowers from the store with glitter on them. Glittery flowers for my Remi!

Hope they can get your level up to help you out, 2thFairy.
 
robbo87

robbo87

Just thought I'd say hello on this forum! Had my first Infliximab infusion on Monday and it went well :) I'm hoping this is something that will finally work for me!
 
ChaoticKylee

ChaoticKylee

I just found out today that I have to give up on the Imuran, and am now moving onto Remicade. Just have to get all of the preliminary tests done then I can start! :S
 
robbo87

robbo87

boro deb said:
Martin - If anything like Petes treatment you will see a massive difference from your first infusion. Good luck
Deb
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Thanks, yeah i think it has made a bit of a difference already but im still on 5mg of pred at the mo aswell, and im scared of stopping it just incase it all goes wrong haha
 
#2asap

#2asap

Hi club,
I;ve been on Remicade since Sept. 2009 and now I am getting joint pain that goes away the same day of my infusion. I am in between doctors and insurance and want my 4-1-2011 infusion. Won't see a doctor until 4-1. Then I go through referral process. Any similar experiences? Any suggestions? #2
 
S

shainams

Side effects not worth it for me

I was on Humira for two and a half years, then all of a sudden had a flare-up. I went into the ER when the pain got too bad to handle, actually thinking I had appendicitis. Nope - Crohn's flare-up.

So my doc put me on Remicade my second day in, after doing a colonoscopy to confirm. I started feeling better right away, it was great! He also put me on 40 mg of prednisone a day, which has tapered to 30 mg for now. Unfortunately, it has not lasted.

I have had my second dose now, and the side effects are driving me nuts. I have severe joint pain, long bone pain, weakness, shortness of breath and chest pain. I called him on Thursday, and will be seeing him in the office on Monday to discuss options. Not only are the side effects bad, but I am still having nausea and abdominal pain even after the second dose.

I suspect he is going to put me back on humira, and add imuran. It is what he wanted to do last summer, but I was resistant to going on a daily oral med. I had already doubled the humira dose since that time.

Shaina
 
#2asap

#2asap

I guess I'll have to have the problem assessed. It could be RA,Drug reaction,Celiac, or Fibromyalgia. I hope you get well Shaina. Take care #2
 
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L

Lydia

shainams said:
I was on Humira for two and a half years, then all of a sudden had a flare-up. I went into the ER when the pain got too bad to handle, actually thinking I had appendicitis. Nope - Crohn's flare-up.

So my doc put me on Remicade my second day in, after doing a colonoscopy to confirm. I started feeling better right away, it was great! He also put me on 40 mg of prednisone a day, which has tapered to 30 mg for now. Unfortunately, it has not lasted.

I have had my second dose now, and the side effects are driving me nuts. I have severe joint pain, long bone pain, weakness, shortness of breath and chest pain. I called him on Thursday, and will be seeing him in the office on Monday to discuss options. Not only are the side effects bad, but I am still having nausea and abdominal pain even after the second dose.

I suspect he is going to put me back on humira, and add imuran. It is what he wanted to do last summer, but I was resistant to going on a daily oral med. I had already doubled the humira dose since that time.

Shaina
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Tell them to check for antinuclear antibodies in your blood. Remicade can raise levels of antinuclear antibodies in the blood and this can cause joint pain.

I did have some abdominal pain for a while, but it seems to have resolved itself. It was so random too. I would get really sick for a day and then be fine. It was not crohn's related abdominal pain. Something entirely different. Good luck.
 
2thFairy

2thFairy

Okay.... had my dosage bumped up to 10 mg and so far I'm really feeling icky.. not horrible like an adverse reaction necessarily, but crampy, hungover, pain in my stomach, etc., that sort of thing. Still, fingers crossed..!
 
S

sms seattle

53 years of Crohn's & Remacade

I have had Crohn's since kindergarten. I'm now 58 years old and have had one emergency operation and have tried most all of the prescription pharmaceuticals and treatments. In 2001 I had my first Remacade treatment. About 2003 I started to get lockjaw about 12 to 24 hours later. I didn't make the connection. I received it after that about every 4 months but wasn't very good at the schedule. In 2005 I had a blood pressure drop while getting the infusion, which was corrected by stopping the application and more Benadryll. I waited until 2008 and decided to try it again because I was having a flair up and was sick. I went home and 5 hours later my body started to started to hurt. For 8 hours I was only able to lay down with entire body pain and couldn’t move. I was about to go to the hospital but the reaction started to go away. It lasted about 10 hours. The bottom line is if you develop symptoms like lock jaw, even year’s after starting Remacade, watch out for other serious reactions. The Remacade was working for years but I was growing intolerant. So if you use it also keep looking for something with less or no side effects. You may only be able to take it for a period of time but everyone is different. Good luck and hang in there. 54 years of living Crohn's experience. SMS Seattle
 
2thFairy

2thFairy

Hey, thanks, sms seattle. It really REALLY helps to hear first-hand experiences like yours rather than just statistics from a pamphlet or other general statements from medical personnel. You have given me more to think about.

This board has helped me so much in my short time here.
 
L

Lydia

sms seattle said:
I have had Crohn's since kindergarten. I'm now 58 years old and have had one emergency operation and have tried most all of the prescription pharmaceuticals and treatments. In 2001 I had my first Remacade treatment. About 2003 I started to get lockjaw about 12 to 24 hours later. I didn't make the connection. I received it after that about every 4 months but wasn't very good at the schedule. In 2005 I had a blood pressure drop while getting the infusion, which was corrected by stopping the application and more Benadryll. I waited until 2008 and decided to try it again because I was having a flair up and was sick. I went home and 5 hours later my body started to started to hurt. For 8 hours I was only able to lay down with entire body pain and couldn’t move. I was about to go to the hospital but the reaction started to go away. It lasted about 10 hours. The bottom line is if you develop symptoms like lock jaw, even year’s after starting Remacade, watch out for other serious reactions. The Remacade was working for years but I was growing intolerant. So if you use it also keep looking for something with less or no side effects. You may only be able to take it for a period of time but everyone is different. Good luck and hang in there. 54 years of living Crohn's experience. SMS Seattle
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Thanks for the input and welcome to the forum. I am sure your experience will be a welcome support. My doctor says that stopping and starting remicade and/or going long than 8 weeks between infusions, greatly increases the chances of developing antibodies to remicade. So it makes sense.
 
K

kslade

Hey guys. I didn't want to make another thread regarding this so I'm just going to post it in here. Hopefully a few of you are in the same situation as me.

My GI has decided that I'll be getting my infusions slowed down to 3 hours rather than 2 hours due to the heaviness in my chest I get after each infusion. I am already on Benadryl IV and Tylenol pre meds. She doesn't want to take me off it because it works wonders for my Crohn's symptoms, it's just these side affects that are bothersome. She is also requesting some addition blood work tests that are suppose to test how much Remicade is still in your system before you get your next dose. She has also decided that I'm to take 50mg of Prednisone the day before my infusion to see if that helps. I hope something works, cause I don't have very good luck with finding efficient drugs. They all seem to either not work or give me harsh side affects.

Is anyone else experiencing this side affect and figured out any options to help deal with it?
 
D

danielleprice

Lydia said:
Thanks for the input and welcome to the forum. I am sure your experience will be a welcome support. My doctor says that stopping and starting remicade and/or going long than 8 weeks between infusions, greatly increases the chances of developing antibodies to remicade. So it makes sense.
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thanks for all the info!!
we will be trying in a few weeks so fingers crossed all will go to plan!
hope everything is going ok for you? xx
 
D

Dave07

Crohn's diagnosis in young children

sms seattle said:
I have had Crohn's since kindergarten. I'm now 58 years old and have had one emergency operation and have tried most all of the prescription pharmaceuticals and treatments. In 2001 I had my first Remacade treatment. About 2003 I started to get lockjaw about 12 to 24 hours later. I didn't make the connection. I received it after that about every 4 months but wasn't very good at the schedule. In 2005 I had a blood pressure drop while getting the infusion, which was corrected by stopping the application and more Benadryll. I waited until 2008 and decided to try it again because I was having a flair up and was sick. I went home and 5 hours later my body started to started to hurt. For 8 hours I was only able to lay down with entire body pain and couldn’t move. I was about to go to the hospital but the reaction started to go away. It lasted about 10 hours. The bottom line is if you develop symptoms like lock jaw, even year’s after starting Remacade, watch out for other serious reactions. The Remacade was working for years but I was growing intolerant. So if you use it also keep looking for something with less or no side effects. You may only be able to take it for a period of time but everyone is different. Good luck and hang in there. 54 years of living Crohn's experience. SMS Seattle
Click to expand...
I have heard that Crohn's is hereditary and I'm concerned about my kids. My oldest (age 3.5 years) often complains of stomach and/or bum pain.

How were you diagnosed at such a young age? What were your symptoms, and how did your doctor identify it as Crohn's?
 
L

Lydia

Dave07 said:
I have heard that Crohn's is hereditary and I'm concerned about my kids. My oldest (age 3.5 years) often complains of stomach and/or bum pain.

How were you diagnosed at such a young age? What were your symptoms, and how did your doctor identify it as Crohn's?
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The heredity link is not the strong unless both parents have crohns. Also if its a hereditary disease in your case that matters too. Does anyone in your family have crohns. Nobody in my family has it so in my case I am sure it wasnt heredity.
http://crohnstoday.com/the-impact-of-crohns-on-pregnancy/#more-147
There is about a seven percent chance that a mother with Crohn’s will have a child with Crohn’s; if both parents have the disease, then the chances rise to around forty percent.
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Does your child get constipated or with hold stool? This is a really common problem and happens to about 1/3 of toddlers and small children. My daughter has stuggled off and on with constipation for some time now. If she holds it in her tummy and her bum hurts. All it takes is one painful bowel movement to scare them and they will always hold it in. I give her ground flax in applesauce and benefiber in watered down juice everyday and it seems to help for the most part.

Its hard not to worry though. I know I do everything in my power to make sure my daughter has a healthy gut. Whole foods diet, probiotics, cod liver oil (lemon flavored), and 1000 IU vitamin D everyday (low vitamin D levels increase the likelyhood of chronic illness and cancer). We also do toddler yoga and breathing exercises for fun. I want her to know how to deal with stress in a healthy way. I dont believe we have to be a slave to our genes.
 
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Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
morning all....have my infusion later today - not to remember to call first and remind them I'm on pre-meds (they didn't have the info last time, and injected the IV Benadry straight instead of diluted)....

Anyway - hoping this morning goes by fast at work - have to drop my truck off for 2 tires and a thorough check-over before my road trip on Thursday afterwards....

Any bets on if I end up running early or late? Appt is at 1230, tire place closes at 5pm....haha.....
 
K

kslade

They screwed up my pre-med order the last time I was there as well. They tried to give me oral Benadryl when I was suppose to get it through IV. It's a good thing that I'm aware of what I'm suppose to get.. Next infusion will be the next test. I am suppose to have my infusions slowed down to 3h rather than 2h, and have additional blood work taken. I wonder if they'll get it right this time. :)
 
#2asap

#2asap

sitting in the chair my pain went away. My internist is checking the antinuclear antibidies and a whole lot of other stuff. thanks clubbies for the info
 
S

shamrock15

Well, guess if I had found this site three years ago instead of now I would have been a member for some time. Been on Remicade for 3 years now, and while it has not completely stopped my Crohn's, it has certainly made things far more manageable. My question about side effects - has anyone developed anemia in relation to remicade? It was never a problem before I started remicade, but since starting it, I have needed enough blood to keep many vampires happy (over 60 units in three years - really glad they screen blood well these days). It seems to happen with almost exactly the same frequency as the remicade infusions. Also - some interesting reflux issues and I really don't like pariet (rabeprazole) due to some side effects.

Thoughts?
 
C

charlotteguy

I'm new to this forum and thank you all for sharing.

I have to get a MRI enterography to see if i have stricturing disease. If i have it then I may go on remicade. I am concerned about the choice between waiting for stricture/obstruction vs having to on long term remicade or another type of TNF inhibitor. Do you guys have any thoughts?
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
I'm almost done with infusion #17!
I had 7 bloody craps yesterday. I thought that was funny timing, the day before Remi. I usually only have 2 non-bloody ones. This morning I was mostly better though, so it must have been the 800 extra calories of picnic food I ate the day before. Yum.

Did I mention that I have gained over 50 pounds since starting Remi? (They were much needed pounds.. well 40 of them were anyways.)
I actually had to start exercising a month ago. YAY REMICADE!!!
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
My Butt Hurts said:
Did I mention that I have gained over 50 pounds since starting Remi? (They were much needed pounds.. well 40 of them were anyways.)
I actually had to start exercising a month ago. YAY REMICADE!!!
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I think I have you beat....have put on about 60 lbs! UGH!!!!!...having a baby and now going to be turning 40 I'm sure hasn't helped! On a good note - since I've been getting out working in the yard it seems like some clothes area a ~bit~ looser!

I could stnad to lose about 1/2 of what I gained - still don't look like I weigh what I do - guess that is good! lol.....

Next remi is in 3 weeks - on the 23rd.....
 
J

JSOAngel

I have been getting Remicade infusions for exactly a year now, and let me tell you, what a difference a year makes! I am feeling so much better these days, and though the infusions typically weaken me for a few days afterwards, the rewards are well worth it. I sleep right through my infusion and enjoy the rest afterwards....sometimes its nice to take a step back and regroup. Then I am a ball of energy and health....thank goodness for Remicade....and Mayo Hospital...
 
S

Sim85

First Insfusion Yesterday!

Hi Guys

Hello from Sydney, Australia!

Started my first infusion yesterday... took about 2.5 hours then they had to monitor me for 2.5 hours after so was a long day.

Haven’t really felt any better though, have my next one in 2 weeks!

Have been getting really bad cramps- when I eat, drink or sleep-I don’t know if I should go see my doctor or just see how it goes! Can anyone recommend anything?

Also a few people have said I should be taking a probiotic or something natural to help with the immune system? Any suggestions!!!

Thanks xx
 
C

Cmk

New guy...

Just signed in...I am 35, have 3 sons and am athletic and active....I have bad uc since2007...nothing helps, not even the 70mg! Of prednisone I'm on....flagyl, asacol, I'm waiting on insurance reply then supposed to start remicade....I'm cautiously optimistic, but a bit nervous as well.....
 
2thFairy

2thFairy

Hi Cmk! I have had a nonstop UC flare for over a year now. Nothing was helping me either. I was really hopeful that Remicade would fix it and then was discouraged when I saw little initial benefit. The doctor bumped me up to the 10 mg dose, and after about 4 days things started to change dramatically. I'm not fixed yet, but am much MUCH better than I was six weeks ago.

You might see benefit right away, and I hope you do, but if not, don't give up!

The only negative I have had with Remicade is feeling sleepy the day of the infusion.

Good luck to you!!
 
C

Cmk

Thx, I just got a call from a nurse...I call back Monday to schedule my first infusion....I really hope I'm not in there forever! But I guess if it helps it will be worth it.....faith I guess...
 
2thFairy

2thFairy

Cmk, 2.5 to 3 hours is the average for the actual infusion time, and you may need more time for paper work on your first visit. Some centers give you Benadryl before starting the infusion, so you might call before you go and see if you will need a ride home.

My doctor does not give Benadryl and prednisone unless the patient has an allergic reaction, but some places give those automatically whether or not you have a reaction.
 
tiloah

tiloah

Hey looks like I'm quitting the Humira club and joining the Remicade club. When will my membership card arrive? Are there cookies?
 
L

Lydia

You can take non drowsy antihistamines if you need to drive. I take claritin or reactine on infusion day instead of benedryl. I get solu-cortef and I also take some tylenol.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
I get IV Benadryl - and drive home myself...but, I DO metabolize it pretty quickly = after about 2 hours I'm wide awake, bright eyed and bushy tailed!!!!
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
off in a couple minutes for my next infusion!...first stop will be to see my boss in the same hospital- he had some major surgery last week.....is doing well though.
 
lilbit

lilbit

I had my 2nd infusion last week. I was given 3 infusions years ago that kept me in remission for years. I was a child and it didn't bother me then because I was used to be poked and proded. Now...I'm a nervous cat. So nervous in fact that I was extremely nauseated with the worst heartburn and I had the shakes during the infusion. Doc thinks its my bad nerves. He may be right but I can't give up on it. I shouldn't have read horror stories on the net. I'll be bringing my husband with me from here on out. Not sure I'm getting the full effect of the medicine yet but we'll see.
 
2thFairy

2thFairy

Wow! So sorry to hear you having such trouble with nerves. The Remicade infusions are probably the easiest thing I have endured yet. I bet you will get used to it soon and it will be a piece of cake.

Speaking of cake, I think it should be mandatory to serve us cake and punch, and have helium balloons with our names on them every time we have our infusions. :)
 
J

Jules in SC

I've been on Remicade for a couple years. It isn't for everyone, but it is the only thing that helped me.

A couple times I had to have it done in the hospital instead of the doctor's office. Not only did I get a room all to myself, they let me order lunch from the cafeteria- no extra charge! Unfortunately, I couldn't do that long term. My insurance pays about $6000 to do it in the doctor's office. They paid about $19,000 for me to do it in the hospital!!! At that rate I would have reached my $5 million dollar cap in no-time!
 
M

Maxwheel

Hey yall. I'm getting my 3rd infusion friday. About a week after the last one I started feeling a lot better with normal 1X a day bowel movements (had been every 3-4 days) and even some diahrea (which seems to be a great sign for me, I'm ussually real constipated due to a tight stricture). This only lasted a week though. The past week I've been feeling worse again. I'm still excited though cause I'm only about to get my 3rd. No bad side effects so far either!
 
P

PaulM

Hey Remicaders! Can I join too? I've been on the Remi for a little over a year now. Got me out of the hospital and off PO. Hope everyone is doing well.
 
M

Mr Bedfordshire

i started remicade on tuesday at my local hospital, and this is how it went/is going for me:

-started the infusion and within 30mins began to feel very tired, but managed to stay awake for the infusion before being allowed home after 4hrs(ish).
-aside from feeling tired, i felt perfectly normal whilst having the infusion - no side effects at all.
-the day after i felt very tired, and did notice a slight increase in the amount of times i went to the loo, but nothing too bad.
-the day after things settled down, my energy levels came back up and i actually slept through the night?! WHAT A DIFFERENCE A FULL 8HRS SLEEP MAKES!!!
-felt really good thursday and today, and i can count on 1 hand the amount of times ive been to the loo in a day since my first infusion.
-Ive also noticed that even though i feel as though i could go to the loo, i also feel like i could hold it for a few more hours, but i think habit made me go when i didnt really need to?1
-only real thing ive noticed is that i get the odd hot flush and my cheeks go red, but aside from that..nothing!

ive got my 2nd infusion in 2 weeks time, and so fingers crossed it will work wonders!!
 
SarahAnne

SarahAnne

So glad the Remicade is making a difference for you! A lot of people get a little tired the day or so after infusion, and then feel their energy levels pick up. I know this happens for me. Hope it keeps helping!
 
fatjoe216

fatjoe216

I've been on Remicade since 2006 and it has the actual disease under control. The only thing i am dealing with is a stricture. So it does work.
 
Grumbletum

Grumbletum

I'm off for my third infusion on Wednesday. This last 4 weeks is the best I have felt in a long time. I had flushing on my neck and chest before my second infusion, and it started again yesterday. Weird. Maybe I just need my fix!
It's a teaching hospital I go to and they asked if I'd help with research so I'll be fasting ( water only ) for 6 hours before my appt.
 
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