Has remicade done this to any of you?

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Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 8/22/2007 8:18 AM (GMT -7)   
Hello Everyone.  :-)
 
It has been 1 week since my second infusion, and for the last couple of days my cheeks have felt hot.  I am only on 2.5 mg of prednisone, so I know it's not from that.  Some people have said to me, "you have a little sunburn!" The thing is, that I haven't been out in the sun, and besides I always wear 30 spf when I am.  I know that one of the side effects says, "lupus like rash."  But this doesn't really look like a rash. The redness isn't all that obvious.  It is the hot cheek feeling that is the most obvious, and I have no fever.  Also, I am STILL having diarrhea.  How long did it take you all who are successfully on remicade, to get rid of the diarrhea (if that was your major symptom of crohn's)?  I thought it was supposed to be pretty immediate.  So how long should I try the remicade if its failing, until I call the doc up and tell them I don't want to be on something with all these side effects that isn't even helping me and to possibly switch to something else like humira? (whoa, run on).
 
Thanks in advanced!
 
Krysta
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 8/22/2007 10:47 AM (GMT -7)   
no, hasnt happen to me.
32 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 
 


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 8/22/2007 10:50 AM (GMT -7)   
My first remi infusion was awful, I am finally feeling better it was 2.5 weeks ago. My next one is next week, totally dreading it. I have that hot burning feeling on my arms and chest.  All I have to do is step out in the sun for a second, it's more the HEAT 90+ that does it to me, not the sun.  Plus feeling totally AWFUL for a week and a half after the infusion does not help. I was practically bed ridden.  I am SO not looking forward to infusion number two.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/22/2007 11:22 AM (GMT -7)   
I don't take Remicade but can tell you even when I was down to my lowest dose of Pred I still had the red cheeks and my face felt flushed. Could be the Remi but also could still be the Pred.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 8/22/2007 11:56 AM (GMT -7)   
I was flushed a few days after my very 1st infusion. Everyone at work noticed. A woman who had cancer and had chemotherapy called it the "chemo flush". She said she used to get it all the time......I don't know why though.

Jenn4dex-my experience with remicade has been awful,too. Including an abscess and a new fistula.I get very tired and joint aches,too. Hope your next infusion goes well! :-)

Ginger


36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 8/22/2007 12:06 PM (GMT -7)   
OMG Ginger. I thought Remi was supposed to heal that stuff.  I'm giving this stuff one more chance and if I get sicker, I'm done!
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/22/2007 12:14 PM (GMT -7)   
Hi I am not sure how long it takes for everyone but I would give it some time I get the flush but not sure which med is giving me it. Even to close my fistula it took 3 infusions. I guess the only thing I could say is ask yuor GI if that is a symptom and maybe it is the pred. and Rem. working together that does it. Wish I could be of more help.I can say that I don't have any pains now and not much D.I can go places without worrying about the running to the bathroom which is wonderful. I have recently had my dose doubbled bacause I had a few days frequent D or at least that I think that is the reason.Really hope you get some results it might take a little time .lol gail

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 8/22/2007 2:54 PM (GMT -7)   
Gail-you are always encouraging and have nice things to say. I always smile when I see your "lol" too. :-)
Ginger
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 8/22/2007 5:31 PM (GMT -7)   
Hi I have been on Remicade for over 2 years. No-side effects. I would call your GI doctor and let them now
about the flushing cheeks.
teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 8/22/2007 5:54 PM (GMT -7)   
I haven't had the cheek flushing. But my skin has broken out since I've started on Remicade. I have never had trouble with acne before in my life, I'm 27, a little old for it to be starting. Also my hair has been falling out a lot more since I've started Remicade. I've only had 2 treatments, but I'm also wondering if this drug is the best thing for me.

Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 8/22/2007 6:54 PM (GMT -7)   
I told my dr about it today and he said lets keep an eye on it. I am doubting its the prednisone because the only dose that gave me the flushed face was 40mg. It went away completely when I tapered to 35mg, and that was like 2 months ago, today I tapered to 2.5. I am pretty sure it is the remicade because that's the only thing that has changed. I also have noticed my hair falling out more since. I hope that by the 3rd infusion it actually starts helping!
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


mom1760
Regular Member


Date Joined Oct 2006
Total Posts : 87
   Posted 8/22/2007 7:36 PM (GMT -7)   
i have been taking remicade iv's now since dec of 06 and they have increased me to the maximum dose and i still i can't make it the eight weeks and i still have dia. and i am always taking other prescribed medicine for my problems but it doesn't seem to help.When it first started to warm up i had a similar reaction but would also itch real bad and break out in hives so i now take 2 allergy pills during the summer.I am now to my breaking point i believe i have been having trouble working and taking care of my family i just don't know what to do.

tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 8/23/2007 11:49 AM (GMT -7)   
Hm. After reading these posts, now I am wondering what to do. I did get flushed and rashy after my second dose (I have had three, last one 4 weeks ago). My D is worse, I was in the hospital last Wed and Thurs for head and neck pain, vom and D. My potassium level was down to 2.4. Now, did coming off pred (2 wks) cause it or being on pred cause it. Or was it a bug? My joints hurt again being off pred. My GI doc now wants to double my remicade dose, he is going to talk to the hematologist. He asked if I wanted to go back on pred and I said NO, not yet. He increased my dose of entocort from 6 to 9 mg. Ugh. Only good thing is, I have lost 9 of my 30 added pounds, cuz I don't feel like eating.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 8/23/2007 12:15 PM (GMT -7)   
I've been on Remicade for over 5 years now, and it has worked very well for me. I think you need to give it a little more time before deciding on if it works or not. It usually takes 3 infusions to build up enough of it in your system to get the full affect. As for diarrhea, Remicade isn't going to necessarily fix that right away. Even with my double dose every 7-8 weeks (1000mgs), I can still get diarrhea if I drink too much fluid, or eat something I shouldn't. Remicade only takes care of the inflammation, it isn't an anti-diarrheal.

As for the rash, I've never had any side affects, ever, so I can't comment on that. I think if it isn't physically painful, or really out of hand, a wait and see attitude might be a good choice. If the Remicade really does kick in and start working for you, the benefit might outweigh the drawbacks.

Hang in there.
Matthew McKenna,

"I'm just along for the ride."


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 8/27/2007 8:34 PM (GMT -7)   
It takes a good 6 weeks for remicade to kick in. I started feeling better almost exactly at the 6 weeks (3rd treatment) I get it every 8 weeks and do start noticing about 6 weeks that it is wearing off. I haven't had much for side effects other than being really tired the day of and a few days after each treatment. I think giving it a good chance is worth a little discomfort. I went 7-8 months without a flare up since being on remicade. the longest I have ever gone!! Now I am back on the preds but I think doing preds or having a flare every 7-8 months versus all the time is well worth staying on the remicade. still have the d but I also don't have my illeosecal valve anymore so there is nothing to "shut things off". And it isn't as bad as it used to be. I do get a little itchy during the infusion, but it only lasts for a couple hours.
Just give it some time and you might notice better results after your body has a chance to process everything.
Good luck!
Dx 2003 but probably had it 10 years prior
GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05
Currently on 100mg 6mp and Remicade every 8 weeks, Ambien as needed, preds as needed


Faizi
Regular Member


Date Joined Oct 2006
Total Posts : 451
   Posted 8/27/2007 9:01 PM (GMT -7)   
My daughter had several Remicade infusions with no side effects. Definitely no facial flushing. Of course, everyone is different but flushing is not a typical effect that you get with Remicade.

Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 8/28/2007 1:34 PM (GMT -7)   
Thanks everyone for your replies. I was just worried that I am putting myself at risk for all of these serious side effects with no positive results... but now after reading all of your responses, I will definitely give it at least to the 3rd or 4th treatment. I was just reading all of these other posts about how people felt great instantly, I was thinking to myself, wow, obviously it's not working for me... but everyone's different, so I will wait it out.

Still having the diarrhea, but strangely only in the morning 3-10 times. Then in the evening and at night, nothing. It's not anything I am eating, since I have been switching it up to test it, and even went back to my bandaid (ensure) for a while to see what would happen, and still... diarrhea in the morning...
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 

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