Need Encouragement For Remicade

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JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/23/2009 5:13 AM (GMT -7)   
I haven't been on the boards here that much but I see so much encouragement.  I think I am at the point I need some now.
 
I got a call late on Thursday for me to call to make an appointment for my Remicade infusion.  This is my first time getting it and I am a little scared.  I don't seem to get realistic answers from my doctor about it and after reading the post on here about the drug I am a little worried.  I know the good outway the bad and I look forward to feeling better (I hope).  My biggest worry is that I have had bad reactions to almost every drug for CD.  My biggest worry is that I will have a bad reaction to Remicade.
 
I am also worried about the fatigue and weight gain that so many people tend to get from it.  I have to work and don't have that many sick days left.  I am also overweight and trying to lose it so the thought of gaining it really upsets me.
 
I would love some words of encouragement to keep me on track and give me the strength to go in with a high head.
Crohn's Disease since '88
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 10/23/2009 5:36 AM (GMT -7)   
I've had 3 or 4 infusions and haven't had any reactions. I have had some fatigue the last few months, but I don't know if that is related to Remicade or not. I am feeling quite a bit better than I was before I started my infusions, so they have definitely been worthwhile. Most, if not all, hospitals/clinics pre-medicate with Tylenol and Benardyl to ward off any reactions. As for the weight gain, I would see that as a sign that your intestines are healing and you, therefore, are hungrier than when before.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/23/2009 5:51 AM (GMT -7)   
My husband has been on remicade since April 08. It got him out of needing a major colon resection, and coming home with 2 ostomies. So, it was the miracle drug that has given him back his life. I hope it does the same for you.

The infusion centre nurses are well trained! That was my observation. They check your vitals a lot, and also know what to do should you have a bad reaction. If you have a bad reaction after you go home, like muscle pains etc. the doc will premedicate you with steroids before the infusion in order to suppress the reaction the next time.

Also, I have noticed no weight gain with my husband - he put on the weight he lost, but doesn't seem any more prone to weight gain than normal. Also, remicade gave my husband back his energy that crohn's took away from him. You may feel a little weary the first couple of days after the infusion, but after that you should feel fine.

Remicade really has done wonders for lots of people - don't let it scare you into not trying it. The doctor said that in his 15 years of practice, my husband had some of the worst inflammation he'd ever seen in patient (hamburger meat), and Remicade was a last ditch option, and it worked! 18 months later, and I think his crohn's is still under control.

Good luck my friend.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/23/2009 7:15 AM (GMT -7)   

You can do it! 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/24/2009 7:43:52 AM (GMT-6)


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/23/2009 8:49 AM (GMT -7)   
I start Remicade in a week or so. I'm not worked up about the side effects or infusion reactions. I'm more concerned with non-response. I'm excited to try something that may finally work, but I don't want to "jinx" myself by getting too excited.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 10/23/2009 10:11 AM (GMT -7)   
I was really afraid of getting the Remicade too. I was just diagnosed over the summer, and I have never been a medicine person. However, I was out of work for a month, and prednisone wasn't helping. I lost a ton of weight and couldn't walk due to arthritis in my ankles. I know everyone is different, but I had my first infusion and within a couple days I felt a lot better- solid BMs, much less arthritis, no more fevers.

As much as I'm worried about staying on it long term, it really gave me my life back. I went from not being able to walk, to now back to as active as I was before- running, lifting, working, basically enjoying my life. I did gain back the weight I lost, but I needed too, and I haven't gained more than what my normal weight was before I got sick. I get my fourth infusion next week. I always get a little nervous about having an allergic reaction, but knock on wood, so far so good.

I take Tylenol PM an hour before the infusion, and it makes me tired, but I don't notice any fatigue besides that. I feel like myself again. I hope it does the same for you. Good luck!

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 10/23/2009 10:35 AM (GMT -7)   
I have been on Infliximab (Remicade) for a year. I am already overweight, but have not gained anymore weght, in fact I have last about 10lbs. I was feeeling tired but was found to be B12 deficient, but now I have regular injections I am fine

Diagnosed 2005.  41 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/23/2009 12:57 PM (GMT -7)   
Taking Remicade was the best thing i have ever done..it gave me my life back..its the most amazing drug i have ever come across in my entire life. It works right away like within the hour. So far knock on wood no side effects and i am not allergic. Not everyone is allergic..unfortunately you hear the horror stories online. My sphincter muscle was so inflammed...it went from being horrible to my surgeon telling my husband that my muscle looked great. My fistula shrunk down to one inch and i was able to remove it..my skin tag shrunk down and i was able to remove that as well. Ever single cut on my body healed..no more little cracks in my hands or my feet. Even areas where i had irritation from shaving healed. The inflammation in my eyes were gone. My energy came back..my joint pain went away...i stopped limping in the morning. Even the color in my face came back and i gained some weight because i was finally having formed normal stools like most of the world. I can now eat whatever i want..even things with fiber. Go for it..don't worry.

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/23/2009 1:01 PM (GMT -7)   
Just want to thank everyone for the encouragement.  I have set my appointment for Nov 6.  It is going to be a long 2 weeks now.

Crohn's Disease since '88
 


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/23/2009 2:55 PM (GMT -7)   
My doctor and I discussed Remicade a while ago and ultimately decided not to do it because the sudden, rapid healing of the intestines -- and resulting formation of scar tissue -- can actually be detrmental to someone who has problems with strictures (as I have in the past.) If, on the other hand, I had been suffering with fistulas, my doctor says she would have gone for it without question because Remicade is supposed to work really well in such cases.

Around the time I was first diagnosed with CD, my doctor at the time got me into Remicade trials (or something similar to Remicade ... I don't really remember exactly what it was) and I started feeling much, much better. I was not doing the SCD at the time and it induced an immediate 6-month long remission. I did not have any adverse reactions to it at the time, despite receiving 6 or so infusions.

So to summarize: I wouldn't worry about it. In fact, my doctor says that some patients experience very, very long periods of remission when on Remicade so you might be one of the lucky ones :-)
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/23/2009 4:04 PM (GMT -7)   
Hey Java,
To bad you couldn't tag along with me,I go every 8 weeks.
Been going for around 3 years,with little to no bad reaction...
I actually enjoy my infusions,especially my snooze...ZZZ!!!
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 11/9/2009 10:30 AM (GMT -7)   
JavaJay,

Let me know how it went, I start mine in a couple of weeks and I'm pretty nervous. :/
37 y/o female.
Diagnosed in 2001
Current meds: Entocort, Vitamin D & Calcium
Starting Remicade on November 23, 2009


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 11/9/2009 10:35 AM (GMT -7)   
Well, the first time wasn't so bad.  No Benedryl was given and within 2 hours I was done.  I am told my next time is going to be longer and there is a greater chance of problems.  I am told the 2nd and 3rd time is the worst for problems so once again I am nervous.
 
Redone-- don't worry.  I saw a lot of people there and no one seemed to mind it.  You just get to relax and sleep for a couple of hours.  There was even a little boy next to me (about 5-7 years old) and he was so brave.  Didn't cry or worry at all.  I can tell he has been doing this for a while..but I guess if a little kid is scared..why should we be :)
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009


redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 11/9/2009 10:40 AM (GMT -7)   
Thank you JavaJay, I'll try to be brave like the little fella...god love him :)
37 y/o female.
Diagnosed in 2001
Current meds: Entocort, Vitamin D & Calcium
Starting Remicade on November 23, 2009

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