Thinking of starting Remicade. Some questions.

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Merlyn
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/29/2008 7:54 PM (GMT -6)   
I am in the hospital for the worst flare I have ever had. I let it go for over a month because I couldn't take time off of work, which is something I know better than to do. I ended up here, and I've been here in the hospital for over a week now. They have me on intravenous steroids as well as 33% more Colazal than I normally take, in addition to my usual 100mg of Imuran. My C-reactive protien (measure of inflammation) went from 8 down to 1.1 (normal is >1) and now it has gone back up to 2.4, and I'm seeing blood in my stool again.

The doctor says I am not reacting to the medicine any longer and so we must take the next step, which is putting me on Remicade.

Remicade is a long term, expensive commitment and I do not want to jump into it without knowing more about it. I understand how it works and I understand the dosage information with regards to bi-monthly infusions, but I'm after some first-hand testimonials about how well and how quickly it works. I want to know as much about it as I can before I give doc the go-ahead to pump me full of the stuff.

How fast does it work?
How well does it maintain remission?
Can I expect future flare-ups?
Any side effects I should know about?
Any tidbits of information that I would find useful?



Thanks in advance,
Mike

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/29/2008 9:03 PM (GMT -6)   
For me, it worked after the second infusion. For some it works right away, others have three or four infusions before they can really tell a difference.
For me, 2 1/2 years, longer for others. Some people have regular small flares, for others it doesn't work at all.
The side effects are all published; I have had none except for a pleasant tiredness the day of the infusion.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/29/2008 9:21 PM (GMT -6)   
Hi Merlyn, and welcome to HealingWell! I'm sorry you are in the hospital; but I too am on Remicade, and have had the same great results as Judilyn. Now this is my story, and I can't say everyone has been the same; some say it takes about 3 or 4 infusions before they feel results. I had immediate results and have never looked back. I feel good and live a very active life. When I first started the treatments I was so sick I prayed they would work. I'm back to living life again and very happy. I've had no side effects, and the longer I take the meds, the better I feel. I used to have some time in between infusions where I had a little urgency or fatigue, but realized it was because I was close to my infusion. Now I feel good almost all the time! Good luck, and if you have any other questions, please don't hesitate to ask. Take care and let us know how you are doing.
Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Merlyn
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/30/2008 12:17 PM (GMT -6)   
Thanks for your responses. I'm getting a blood transfusion as I'm typing this.. I've lost so much blood I faint when I get up quickly. I'm a little scared, to be honest. Colitis hasn't ever kept me down like this, and I'm not going to let it get the better of me this time. I decided to do Remicade this morning. It will take a few days to get it here (the hospital doesn't keep any) but hopefully I'll be on the upswing soon. Getting some blood into my body is the first step.

I'm so grateful for all of the support I've gotten from everyone, including you wonderful people. I love you. Thanks for being there even though you don't know me. God bless.

Mike

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/30/2008 1:23 PM (GMT -6)   
While I haven't achieved what I'd consider a complete remission, the Remicade let me get off Prednisone after being on it for two years and likely being steroid dependent. I have to have it every six weeks rather then eight, which keeps me at an "almost" remission. I occasionally have to go NOW and have some near misses, but nothing like it was before the Remicade. I have 2-4 bathroom trips in the morning, but things settle out fairly quickly and I tend to be fine most of the day, until it starts to get close to six week. Every once in a while I'll have a rough day ... I am trying to figure out whether it's something I am eating, not enough sleep or perhaps stress.

I tolerate the Remi better than most of the meds I have been on. I find the infusion time almost pleasurable -- a two and half to three hour time that I am forced to just sit and relax. The nurses are so good that getting the IV in doesn't hurt at all. I bring my Zune MP3 player and watch or listen to podcasts or music, I read, do needlepoint. The infusion clinic provides a meal if you're there over a meal time but it is pretty disgusting so my routine is to stop on the way and bring my breakfast and decent coffee or tea drink.

As far as cost, I am extremely lucky, I have no cost at all, not even a copay. I asked and was told my dose is $4,000 a pop!!

Good luck, hope it works for you. I am having a look-see in October from which I need to decide if I want to go for surgery or not. Like I said, it's improved my quality of life a lot, but I am still having enough issues that surgery may be in the cards.

Meesh
Diagnosed UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
9 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix;Lexipro


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 9/1/2008 9:00 AM (GMT -6)   

Hi Mike,

I was in the hospital for 2 weeks in Feb because of a severe flare up. My body wasn't responding to meds either so i am now on Remicade. It took a few days but it seemed to do the trick. I still have to be very careful what I eat though. I am at 8 weeks between treatments right now and will hopefully go to 10 weeks the next time. I have not noticed any side effects. I hope you have good insurance thought because it is very expensive! My insurance covers it but I saw on my statements that it was costing between $17,000 to $19,000 per visit. I am on 10mg per kg. Hopefully I will be able to go down to 5mg per kg soon. 

Keep your head up. Hopefully this will be your miracle drug. I will keep you in my thoughts.

V


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/1/2008 11:23 AM (GMT -6)   
Can anyone clarify whether Remicade counts as a treatment or a prescription in the USA? (For those of us with insurance but no prescription drug benefits...)
40 years old and female
Dx ulcerative proctitis June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories nightly
Effexor 37.5, Clonazepam .5 mg and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Osteopenia (and I haven't even taken steroids!)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/1/2008 2:42 PM (GMT -6)   
I think it depends on where it's given and your insurance. My doc has it administered at his infusion center, and my insurance considers it a specialist doctor visit. Hence, I pay on copay for everything.

Because insurance policies vary so much, I'd suggest checking with your insurance company to see how they will look at it.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 9/4/2008 7:02 PM (GMT -6)   
Emory - I have have BC/BS and it is considered a treatment - not a prescription.  It actually shows up on my statements as "chemotherapy." 

KTM

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