How to you know if you should stay on Remicade?

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Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 12:41 PM (GMT -7)   
I have done a couple of posts on my symptoms since starting Remicade. I am on my third infusion, still get stomach pains in the upper right quadrant, had the worst pain I have ever had on Saturday. My knees hurt, left foot is killing me, and my boobs once again are killing me. I itch all the time, I generally don't feel well for about a week and then it passes. Then it comes back. How does someone know if the side effects are worth taking this medication? Should I maybe adjust my dosage? My doctor asks me NO questions. I finally put a call into him and guess what, he's on vacation again. He should be back tomorrow. Should I just change docs? Can I change in the midde of remicade treatments? I am sooo confused. Has anyone been taken off and what were the reasons. I just don't think it's doing anything for me. Of maybe it has not kicked in yet? I know it's sure kicked in on the rest of my body! Please help, I am home today from work feeling like total crap.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


UKpup
Regular Member


Date Joined May 2005
Total Posts : 213
   Posted 10/29/2007 1:40 PM (GMT -7)   
Do they give you any pre-meds at all? - pup
The funny story of my first abscess

The paper about the apheresis study

******************************************
"I've got a fever and the only prescription is more
cowbell." --Christopher Walken
******************************************


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 3:22 PM (GMT -7)   
Yes during the infusion I take an anti nausea and benadryl. I am on Prograf instead of 6mp.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/29/2007 3:22 PM (GMT -7)   
I would not give up on it yet before exploring some pre med possibilities with your doc. What do you take prior to the infusion? What are you on in addition? Do they have you at max does and how often?

I didn't have any reactions to Remicade, until the very end, and saw results quickly but others have had to tweak theirs to get it right.

If your GI is always out of touch, I'd consider seeing another one. Demand an appt in person with him before your next infusion and talk things over.

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 3:29 PM (GMT -7)   
I wonder what tweaking he could do? I hate my remicade nurse, she is so mean, I have no idea why she is a nurse, and wonder if she tweaks stuff or not. She makes it seem like she is annoyed she even has to work, when I try making conversation with her. I was told to take a tylenol before the infusion. Nevertheless these things are still going on 4 weeks after, so the premeds I don't think have that much affect. I just figure how much can premeds do for poison. with all of these side effects, I just can't help thinking this is what I am doing to myself. I feel way worse on remicade than I ever did wtih crohns.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/29/2007 4:23 PM (GMT -7)   
Hey Jenn! My fourth treatment is coming up and I'm wondering the same thing you are. I don't go back to my GI until the 6th, but I'm going to ask him what he can do. I feel sick to my stomach all the time and am sooooo exhausted. I'm considering surgery because I have two small children and just want to be better. I've heard that the resect surg. is not that bad. You should tell your doctor what you want and make sure he listens. I have a hard time with mine he has been on vacation for ages and I haven't seen him in 3 months. I would think about finding a new doctor. You can switch while on Remicade just make sure that your new one knows what meds you are on. I haven't ever had any side effects while on Remicade, they give me a steriod shot before the treatment. I don't really feel worse on the medicine, I just still feel really bad and am tired of being so sick all the time. Hope this helps, you should definatly consider a different medicine and doctor though. Talk to your to them about Humira or just a different combo of meds all together.
DX: Crohns in March 2007
Meds: Remicade


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 10/29/2007 5:04 PM (GMT -7)   
I keep getting fistulas from remicade. I have gotten 2 fistulas since starting it june 5th plus I am more tired than ever and have constant headaches and muscle weekeness and pain. The joint pain has subsided at least.
 
I am due for my 5th infusion 11/13 and my Dr. visit was cancelled after the 4th infusion and now for this infusion and I can't see him until 12/11. So I have not had a chance to speak to him. I am really fed up with the neglect. He knows I am having problems.
 
I have no answers for you but I am going to Mt. Sinai in NYC 11/27 and plan to ask this very question. I will post to you when I get back!
 
Sorry to hijack your post but I started out just trying to let you know you're not alone! Remicade is not the miracle drug for all of us sad
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 10/29/2007 5:10 PM (GMT -7)   
Thanks you guys, at least I am not the only one going through this. I'm trying to hang in there! You too!
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/29/2007 6:18 PM (GMT -7)   
You guys are scaring me.
I'm going to the GI tomorrow and I know we'll be discussing Remicade -- sounds awful from these posts.
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/29/2007 6:27 PM (GMT -7)   
You might want to ask about taking pred. 4 days before your infusiona dn 4 days after your infusion. I used to take zyrtec like that, but I never have had any issues after my infusion, so I just stopped doing that. Unfortunately, remicade doesn't work for everybody.

glowmoment.....don't let this scare you....I have been on remicade for almost 3 years without any problems!

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 7:13 PM (GMT -7)   
Sorry don't mean to scare you. I really thought it was going to be the miracle cure. I can't take prednisone, unless absolutely necessary, I already have osteoporosis and I'm 38 from the Entocort, no way am I going near Prednisone. I think prednisone makes anything feel better. If the remicade was working for my stomach pain, I would try getting through the side effects, but if it's not working, what is the point of feeling like crap really? Like I said, I am confused. I am sure my doctor will want me to stay on it, they get paid to push these meds. I'll let you know what we decide if I ever talk to him.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


UKpup
Regular Member


Date Joined May 2005
Total Posts : 213
   Posted 10/30/2007 7:19 AM (GMT -7)   
glowmoment, Remicade was the best medication I was ever on. I loved it and really looked forward to the infusions. It surprises me that ginger71 keeps getting fistulas with it. I had a fistula for 18 months before starting the Remicade and about a week after my first infusion it was gone. That's one thing that Remicade is supposed to really help. Really I felt great while I was on it and was pretty upset when this whole lung thing happened. I don't know anyone that has had the same problem with their lung as I did and it may not have been the Remicade that caused it, but that is really the only thing we could all come up with.

Jennifer, I'm with chroniemomx2 with the pred. However, my GI had me take it in my IV 30 mins before the Remicade started along with benadryl and tylenol.

pup
The funny story of my first abscess

The paper about the apheresis study

******************************************
"I've got a fever and the only prescription is more
cowbell." --Christopher Walken
******************************************


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/30/2007 12:40 PM (GMT -7)   
My doctor has suggested I take prednisone as well in the IV before the Remicade. My thoughts are why don't I just skip the remicade if I have to take Prednisone? It's all too silly to me, if I can't take teh remicade, I just can't take it. They say I am extremely sensitive to all new meds and that I am odd. Oh well. Maybe it's because I never took anything until I got diagnosed with this insane disease.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 10/30/2007 2:31 PM (GMT -7)   
Glowmoment-do not be scared. I am a rare case. Remicade is a miracle drug for lots of people. There are more positive post regarding the drug and how it has worked for others. My Drs. are not even sure I truly have Crohn's yet they are treating me with thi s drug. That is the scary part?
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 :)


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/30/2007 5:35 PM (GMT -7)   
Didn't mean to freak anyone out. No medicines have worked for me, everyone is different... and there are a lot of ppl out there that are in remission because of remicade. So don't get discouraged because it doesnt work for some ppl. Hope you are feeling better Jenn, and maybe we will get ourselves straightened out soon.
DX: Crohns in March 2007
Meds: Remicade


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/30/2007 7:54 PM (GMT -7)   
Thanks for all the encouragement. I know that each drug is different for each individual! Nevertheless, I spoke to my GI today and neither of us feel ready to start Remicade. Going to continue with steroids (yuck) and add 6 MP, which I guess takes awhile to kick in. Will discuss Remicade again in a couple of months if all is not going well.

Like Scarlett O'Hara, I'll think about the Remicade tomorrow!

Be well, everyone.
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/31/2007 10:35 AM (GMT -7)   
Well I have a gastro appointment today. I am done with this remicade. I am so sick, my boobs hurt sooo bad, I feel like killing myself today. There is NO way he can convince me to stay on this med when I am feeling things i have never felt in my entire life. Now because of this I have to get a referral to a gynecologist to get a mammogram for this pain. I am soo scared about what is going on in my body from this horrible medication.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/31/2007 5:40 PM (GMT -7)   
Jenn, I have been suffering from depression as well. I just want to snap out of it, but its so hard since we are sick. Try to think positive, and as much as Ive been saying that on here its starting to stick in my mind now to do the same for myself. I hate that you are going through all of this and that you have lost your life partner. Just try not to think about it and it will all be okay! :)
DX: Crohns in March 2007
Meds: Remicade


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 11/5/2007 1:31 PM (GMT -7)   
I haven't lost my life partner, that must be someone else's post.  I have a wonderful boyfriend!  But now I am officially off Remicade, well waiting for it to wear off in the next month or so.  That is some harsh stuff.  I flew to LA to see the surgeon who did my boob job (way before my crohn's diagnosis) for the pain in my breasts, I was so scared.  No problem with the implants, but the Remicade was causing reactions with them and hurting like crazy.  Plus the joint aches, etc, feeling like crap all the time.  I had to stop the antibiotics too, as I had a reaction to them, which is cause the remicade is still in my body.  Severe burning and diarrea.  My doctor wants to start Humira but I want my body to take a rest.  God only knows what is entailed with Humira, nevermind the cost involved.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.

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