Has remicade done this to any of you?

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

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.

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

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

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

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!

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.

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!

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...