Remicade side effects? and other questions

[cheeky]

hey everyone...

i'm getting closer and closer to my first remicade infusion... and as i mentioned before, i'm very nervous/scared.

just seems like it's major.


has anyone here experienced side effects from remicade?

how quickly did you notice a change/improvement in your symptoms?

can you describe exactly what the remicade procedure is like?

should i warn my work that i might get sick from this treatment?? or book the day off work?

any advice?



thanks!

 

[katiesue1506]

Agreed... don't overthink it too much either, I did a few times and I gave myself panic attacks. They are very good at monitoring you for reactions and know exactly what to do if you start to have one. Which usually just includes an IV steroid and Benedryl.

It will take about 3ish hours, so take something with you. I was also always really cold during the infusions. It's not as major as you are thinking it is... if you do well on it, it will actually start to become more of a nuisance than anything because it takes so long. Good luck with everything!

 

[cheeky]

thanks ladies... sorry i didn't see the other thread, but i'll check it out.

i guess it's not that 'major' but it just seems like it is because of the length of time, the procedure method and the amount of money it costs (holy crap thank god for benefits!)...

i'm more scared of these side effects than pills side effects because it seems like this is going right into my system and will be effective immediately.

thanks again.

 

[CrohnieCarolyn]

Try to relax - I know that is easier said than done. I was expecting immediate results after my first infusion but alas it took about 4 infusions before I noticed any real change - but then I was almost normal!!! So much more energy and no flare and eating like crazy and NOT SICK! But, after about a year I starting getting really bad joint pain - not that this will happen to you - most it doesn't - so I am going to try Cimzia on Tuesday - The nurse comes to my house to show me how to inject it myself so at least I won't have to go to the clinic and be there 3 hours tied to a chair - take something to read or just snooze - the Remi made me sleepy and I usually came home and napped the afternoon away...good luck and let us know how it went...

 

[chelli]

Good luck with your infusion. I was absolutely terrified before my first one (I'm due for my 2nd one Oct 2nd) mainly because I had a heart attack in July. I had absolutely no reaction. the next day, I felt better than I had felt for almost a year. It only lasted through Sunday though. I hope the 2nd one will last longer.

Take care

 

[cheeky]

thanks carolyn and chelli ...

i guess because i was just reading that remicade is similar to chemotherapy and the list of side effects is scary...

did anyone get hair loss?


the more days that pass the more i can't help but feel sick to my stomach scared about this.

i know i need to relax and think positive. but i only vent here because noone else will really know what i'm talking about lol

 

[cheeky]

aww thanks so much shantel! you're awesome : )

actually, i do feel much better today, because the remicade clinic had me contact the pharmacist to set things up and the pharmacist had me on the phone for about 40 minutes explaining everything.

also, i was told i can call them with questions.

the pharmacist said something like 10% get the side effects... and a super tiny percentage of people get the allergic reaction.

she did a great job explaining actually, i didn't have to speak much at all... i was thinking 'wow, she goes through ALL this information with people multiple times a day? god bless her' lol

thanks again everyone for the info and support!

 

[Nickyj05]

I've been on Rem for several years and the only reaction I've ever gotten is a histamine release. I now take benadryl before my appointment and all is well. Not saying that you should take benadryl before hand, but my point is it is a safe and effective treatment. The possible side effects are small and treatable. After 6 months on Rem, my scope came back normal and healthy, when before in a severe state of Crohns. I can't say anything but good about Rem other then the price.

 

[cheeky]

Nicky, first of all, your toilet pic is HILARIOUS! hahahaha....


secondly reading this ...

After 6 months on Rem, my scope came back normal and healthy, when before in a severe state of Crohns. I can't say anything but good about Rem other then the price.

made me happy... that's great, congrats! i hope for some great results too.

my GI told me i'll still likely need surgery though... i think he wants my symptoms under control first and then he may want me to have surgery to removed the most messed up area of my intestines (due to the stricture).


*having more positive thoughts now*

 

[Kittee]

I was on remicade for over a year and a half and I did not notice any real side effects. The only minor issue I can tell you about is that the day of my infusion I would always be totally wiped out after wards and need a nap. Then by the next day I'm usually feeling back to 100%!

Don't be afraid.

 

[Nickyj05]

Nicky, first of all, your toilet pic is HILARIOUS! hahahaha....


secondly reading this ...



made me happy... that's great, congrats! i hope for some great results too.

my GI told me i'll still likely need surgery though... i think he wants my symptoms under control first and then he may want me to have surgery to removed the most messed up area of my intestines (due to the stricture).

Thanks for the praise. I figured I needed to start strong with this bunch. Surgery from what I hear really helps put people into remission. Either way I'll be prayin for ya. Keep us up to date on shtuff

 

[Miss]

Half of my hair fell out, literrally half of it. I don't know if it was from the three remi infusions or from being so sick before starting the treatments. My case was severe, blood running out of me about thirty times a day. The remi treatments had a tremendous affect from the very first one but then when my period resumed my issues were hormone related apparently and started back up.
I had oral thrush after each remi infusion.
Petechaie rash on my trunk.
Hair fell out by the handfulls, almost grown back in now a year later.
Terrible gum receding issues.
Joint pain and stiffness after each infusion, almost collapsed going up one stair.

Good luck to you, a lot of people have no sides, I was in the minority I guess.

 

[My Butt Hurts]

The only side effects I MAY be having due to Remicade, I can't even be sure are caused by it.
I have some splotchy acne that I have never had before in my life. I am guessing it's from the Remi. I have a seasonal allergy type nose thing going on, and I haven't had anything like that before. It comes and goes though - so I can't really tell. Also I have had my first bloody nose ever since starting Remicade. Recently I have been really itchy, like dry skin that lotion won't help, but no rash. Mostly on my forehead and in front of my ears.
Other than that Remi has been AMAZING fro me. I am almost in complete remission, and feel better than I have in a looooong time. I put on 50 of the 40 pounds that I lost (haha) can eat almost anything, and feel greaaaaat! I hope it works for you as well as it has worked for me.

I've come to look forward to 1/2 day off of work, and having to sit around for 4 hours and do nothing but text people and listen to my ipod. Sometimes I even try to nap a bit. I bring socks with me if I have been wearing sandals that day. The nurse told me why it's so freezing in there, but I don't remember why. I was wiped out after my first infusion, but it was due to the Benadryl. I was given permission to take non drowsy Claritin for my next infusions, and have felt much better. If you still want more info - do a search for Remicade on here, or find the 'Remicade Club' thread. Good luck!

 

[katiesue1506]

I had a nose thing while I was on Remicade that came and went too... About the time I was ready for another infusion I'd have a runny nose and they'd ask me if I was sick... I don't think I was... I think it was just a thing cuz I never had a fever or anything with it.

 

[cheeky]

The only side effects I MAY be having due to Remicade, I can't even be sure are caused by it.
I have some splotchy acne that I have never had before in my life. I am guessing it's from the Remi. I have a seasonal allergy type nose thing going on, and I haven't had anything like that before. It comes and goes though - so I can't really tell. Also I have had my first bloody nose ever since starting Remicade. Recently I have been really itchy, like dry skin that lotion won't help, but no rash.

funny, i've had all of the above symptoms while on Imuran, i'm still on it. maybe it has to do with the immune system stuff.

Other than that Remi has been AMAZING fro me. I am almost in complete remission, and feel better than I have in a looooong time. I put on 50 of the 40 pounds that I lost (haha) can eat almost anything, and feel greaaaaat! I hope it works for you as well as it has worked for me.

well congrats! i'm happy for you... i want to get better, but i hope i lose weight instead of gaining. i've already gained 45 pounds. : (

i guess i'll have more energy to exercise though... so we'll see. but i look like shit being at this weight. doesn't suit me at all.

 

[cheeky]

ok well, i received the call from the remi clinic coordinator... so my first 3 appointments are set:

Oct 9th

Oct 22nd

Nov 20th


is it weird that my last loading dose is a month away from my second dose??

 

[katiesue1506]

Some people get infusions at weeks 0,2,4, and 8 and some get them at 0,2,6,8

 

[cheeky]

ok cool! thanks katiesue...

so also what's awesome is... my team at work, super supportive and understanding.

my schedule is light on those days (thank god) so i will be taking the days off from work.

so that helps put me at ease.

 

[My Butt Hurts]

funny, i've had all of the above symptoms while on Imuran, i'm still on it. maybe it has to do with the immune system stuff.

Well holy crap! I was on Imuran starting around the same time as the Remicade. I only attributed it to being caused by the Remi cuz MiniCooper asked if anyone else had the same symptoms and she was on Remi at the time. I've been off of Imuran for 2 weeks now. Hmmm.

 

[cheeky]

lol

and ya MBH, why'd you come off of Imuran?

My GI was telling me he'd like me to continue the Imuran while on Remi since there are studies that show they complement each other (well basically, he didn't use those exact words, but same idea).

and i'm sure it came up on here in another thread and i thought it was you who also said it's a good combo... so what up with that?

 

[My Butt Hurts]

I asked my GI if I should come off of one cuz they are both powerful drugs. My main reason is cuz the studies show a risk of some incurable cancer when on Remi and Imuran at the same time. It usually just showed up in adolescent boys, but why take a chance. He thought I should come off Remi, but I thought Imuran. Hopefully it won't bite me in the ass. Even if I flare though - we couldn't really tell if it was due to coming off of Imuran, or just any other random reason. Just like we can't tell if I am feeling better due to the Remi or Imuran or both, cuz I started them at the same time.

 

[Skinny Dub]

hmm well I'm just starting the remicade treatment as well so I might as well share. Actually had my first one last Friday and will be going back in on oct 13 I think and I'm on the 0,2,4,6,8 week plan. If that doesn't work after three months of treatment then I will need to take a different route. I'm also on 40mg predisone, asacol, and going back on 75mg of azasan (after being of it for a week). My doc is given me everything they can since I haven felt good for almost a year and he said if I get another blockage then it will probably lead to surgery and they want to avoid that.

Side affects nothing I think from the remi the first does they gave me benadryl and slept, next time around I will be getting clariton instead. But I have also experienced patch's of acne that I have never had before maybe from the azasan? I think got it shortly after starting that but that week is total haze due to being in the hospital and not feeling well. But the acne doesn't really bother me as long as the crohns is under control.

 

[cheeky]

I asked my GI if I should come off of one cuz they are both powerful drugs. My main reason is cuz the studies show a risk of some incurable cancer when on Remi and Imuran at the same time. It usually just showed up in adolescent boys, but why take a chance. He thought I should come off Remi, but I thought Imuran. Hopefully it won't bite me in the ass. Even if I flare though - we couldn't really tell if it was due to coming off of Imuran, or just any other random reason. Just like we can't tell if I am feeling better due to the Remi or Imuran or both, cuz I started them at the same time.

oh i see... makes sense. hope all continues to go well with the Remi.

how long were you on Imuran?

i've been on it for almost 8 months now.

 

[cheeky]

hmm well I'm just starting the remicade treatment as well so I might as well share. Actually had my first one last Friday and will be going back in on oct 13 I think and I'm on the 0,2,4,6,8 week plan. If that doesn't work after three months of treatment then I will need to take a different route. I'm also on 40mg predisone, asacol, and going back on 75mg of azasan (after being of it for a week). My doc is given me everything they can since I haven felt good for almost a year and he said if I get another blockage then it will probably lead to surgery and they want to avoid that.

Side affects nothing I think from the remi the first does they gave me benadryl and slept, next time around I will be getting clariton instead. But I have also experienced patch's of acne that I have never had before maybe from the azasan? I think got it shortly after starting that but that week is total haze due to being in the hospital and not feeling well. But the acne doesn't really bother me as long as the crohns is under control.

the acne may be from prednisone too. that's a pred side effect.

wow... that's a lot of medication, i really hope things get better for you soon.

i think even if my crohn's symptoms are controlled, and there's improvement in my intestines, my GI may still do the surgery because he's still mentioning it.

i guess since the stricture damage done can't really be reversed? i'm guessing that's why... and might as well handle the symptoms properly before doing the surgery.

i think the combo of remi and surgery would definitely bring about remission.


anyway, skinny dub, thanks for sharing and keep us posted!

 

[Skinny Dub]

Now that I think about it I started the pred and azasan at the same time so it probly is the pred given me the acne. But next week I will start the long process of tappering off of it so.

From what I understand a stricture has scared tissue and once its scared it never really goes back to the way it was and cause the narrowing. I dont know could be wrong??

 

[cheeky]

ya i get the impression that my damage is permanent because my first colonoscopy in january, they couldn't get through the stricture...and prednisone and imuran throughout the months up to august, the next colonoscopy was exactly the same...they couldn't get through the stricture.

so when my GI talked about remi with me, he said 'you're still gonna be looking at surgery at some point'