Tell me ALL about REMICADE

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shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 11/28/2008 6:58 PM (GMT -6)   
Hi everyone, i am just out of the hospital AGAIN!!  I can't get my body to work no matter what we do. I have been on 6mp for the last 5 yrs now, but after having my last child, we are finding that it is not working any longer.
 
They are thinking about putting me on Remicade. I would like to know EVERYTHING. How often are infusions, did they help you, any side effects, do u have to remain on it for life once u get on it (will u flare if u stop?)  Tell me anything u think might matter please. Would like to make an informed decision on this!  Thanks everyone!
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 11/28/2008 7:29 PM (GMT -6)   
I've tolerated Remicade very well since July 2007; I am going to be on it indefinitely. My last colonoscopy in October showed my colon finally healed, all but the last little bit, and I added rectal meds and now I am in remission. I had been on Prednisone for two full years and was steroid dependent. The Remicade allowed me to get off of the Pred, although it still took quite awhile.

I was nervous about infections, but (knock wood) being vigilant about hand-washing and avoiding crowds during flu season has been sufficient, I haven't been seriously ill despite the immune suppression.

Some people on the board here say they feel tired for the rest of the day after their infusions but I have never had that experience.

The infusion process itself is nothing to be worried about. You'll likely go to an infusion clinic, possibly at a hospital. I am sent to the same place where people get chemo, so I usually leave feeling grateful that "all" I have is UC. Typically you'll be in a comfy chair that reclines if you want, there may be a TV. My clinic offers the use of iPods on request but I bring my one Zune player loaded with podcasts and videos, I bring a book, I also being my current needlepoint project. I bring so much to keep me occupied the 2-3 hours whizzes by. I have taken to stopping on the way for a bagel and coffee and bring that with me as the meals offered are so disgusting (bleh, hospital food).

The nurses at infusion clinics are VERY good about placing the IVs and its very painless. Your temp and blood pressure will be monitored throughout. You may need to be given Benedryl if you have a reaction -- I think the folks who find they are tired require Benedryl or other premeds that bring that on. I just get the Remi infusion.

I found I need my infusions every six weeks. My GI suggested I go to eight weeks now that I am in remission, but it took me so long and so many meds to get here I am afraid to mess with what is working, so we're sticking with what is working for now. I may go to seven weeks after the next one. We'll see.

Check you insurance coverage -- apparently these infusions are $6,000 a pop!! I am fortunate to be covered 100%.

I hope this works for you -- before it kicked in for me I was pretty much getting myself ready for surgery.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 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, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Icebreaker
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/29/2008 2:15 AM (GMT -6)   
I have been taking Remicade for about for approximately eight 98) months, and teh following is what I have learned about it:
 
1.  Medicine:  Is a biologic (an engineering protein) that works to inhibit "TNF" recptors that cause inflammation.  It chmically bonds with the receptors, so that  they can not cause inflammation.  Remicade was originally developed for arthritis, but was subsequently approved for Chrons and then Ulcerative Colitis (UC).
 
2.  Dosage:  Standard dosage is 5 miligrams (mg) per kiligram of body weight (A kilogram is approximateky 2.2 pounds).  My dose wa srecently increased to 10 mg per j kilogram.
 
3.  TB Test:  You will have to have a TB test, before they can start the treatments.  If you have TB and they give you the treatmenst the TB will get much worse.
 
4.  Adminsiteriing the medicine:  the medicinbe is adminsitered intravenously, because f it is taken orally the digestive system would destroy it before it could work.  The treatmnets are usualyy given fist one, the 2 weeks later a secondf ne, then 4 weeks later a third one, the 6 weeks later the next and then the treatmenst are usually 8 weeks apart (some people stay on a six week schedule though). 
 
5.  Place:  I receive my treatments at the Oncology Lab at my hospital. 
 
6.  Duration:  A treament ake as long as 4 hours, becaus they give it too you very slowly, to make certain that you do not have an allergic reaction to the drug.  A normaly treatment takes about 2 hours. 
 
7.  Other mecicines:  Before they give you the treatment they give you Tylenol and Benadryl to help prevent an allergiuc reaction/
 
8.  Experience:  The experience is not bad at all.  You might feel a lsmall amount of pain when they first start out the IV, but that quickly goes away.  They use a cathereter for the IV, so teh hole is very small, and stops bleeding some aafter the IV is removed.  With me the Benadryl usually puts me to sleep.  They sit you in a reclining chair with one arm up on a table by it, and you just relax and take teh medicine in.  The nurses will take you temperature and blood pressure vefore starting the treatment, during teh treatment, and before you leave, to make sure that you ar enot having a bad reaction.
 
9.  Side Effects:  The biggest side effect is a reduced resistance to infection.  So far I have not had any problems at all, but some people do.
 
10.  Blood Test:  My GI has blood tests done before each treatment to check my liver function, blood chemistry and Complet Blood Count (CBC).
 
11.  Treatment not a cure:  Remicade is a teatment and not a cure, so that you have to keep taking it.
 
12.  Resistance:  One probloem is that your body can develop a resistance to Remicade.  The body can consider it a "foriegn" substance and attack it, like it does transplanted organs.  I take Imuran to help preventthis.
 
13.  My experience:  I have had good effects with Remicade.  I had a colonoscopy 3 months ago, and my GI was amazed.  I was completly healed, and he could even see the blood vessels in the side of my colon.  about 2 months ago I started to flare-up.  I was going through a terrible time, and I think I worked and stressed myself into a flare-up.  I had a Remicade treatment and that improve dthings.  I had a sigmoidoscopy that showed that I was moderately inlfmaed, so my GI increased my dose to 10 mg per kilogram of bodyweight and gave me a treatment at 4 weeks rather then waiting the full 8 weeks.  I have improived since the last treatment ( aweeek ago), and am down to 5 bowle movemsnt and they are starting to solidify. I have another treatment schedulke dfor 16 Jan 09, and I am hoping that this treatment will put me over the top.
 
14.  Results:  Results are highly variable from on eperson to the next, so patiece will be your greastest ally.
 
I hope the above helps and good luck with what ever you do. wink

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 11/29/2008 7:09 AM (GMT -6)   
That was a very informative post, however, not everyone is given Tylenol and Benedryl prior to treatment. Your reaction at your first treatment, which is slower than then subsequent treatments, will determine whether or not you require premeds.

Regarding Imuran and Remicade, there have been tests showing a link between cancers and Remicade that is much more pronounced when the patient is also on Imuran. Many doctors have stopped having their patients take both. Personally, I was unable to tolerate Imuran and that was when we moved on to Remicade.

If you take the Remicade continuously, you have less of a chance of developing a reaction against it. For that reason once it is working and you are in remission, you'll tend to be kept on Remicade. If you feel better and stop, you may not be able to use it again.

On the positive side, another similar drug, Humira, which is based on a human protein and not a mouse protein, has been approved for RA and Crohns, and will more than likely be approved for UC before too long. If you no longer can use Remicade at some point Humira may well be an option by then.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 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, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/29/2008 8:28 AM (GMT -6)   
I don't know about that "many doctors have stopped having their patients take both" statement re. Imuran & Remicade- I'm still taking both! I think the majority of people who use Remicade for Crohns/UC do so in conjunction with either 6MP or Imuran. Yeah, the risk of cancer is greater while using the 2 in conjunction, but it's still a very small risk. It's not so much a matter of developing a "reaction" to the drug, or having to stay on it continuously- it's more that even with continuous long-term use, your body will develop antibodies each & every time you get an infusion. Re. Tylenol & Benadryl- I don't get either. I did take them the first couple infusions, but not now. Mine take about 2 hours from the time the pump is started 'til the meds gone. But the whole thing takes about 3 hours, between the time they get the IV set up & the pharmacy brings the drug- I go to an infusion center in a hospital, & they don't mix the drug until you're actually there ready to get it, because it's so costly.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


FitWithUC
Regular Member


Date Joined Nov 2008
Total Posts : 64
   Posted 11/29/2008 8:52 AM (GMT -6)   
Well I've been on Remicade since 2005, I was using Remicade and Inmuran to get off the Pred, I got out of Pred, but I had an tooth infection which caused me several problems, a problem with some liver indicators and therefore was put off Inmuran. The Remicade worked really well till October, I think my body is now creating antibodies against the medication, therefore my GI upped the doses. I hope to get better with that, but only time will tell. I wouldn't like to be on this medication long-term, nobody truly knows what it could do in long-term use, I'm not up to the risk of having cancer (not that you will get it) or other illnesses which are worst than a Sick Colon.
Peter, 21. Puerto Rico
DX: Ulcerative Colitis as of 06/05
Remissions: Remission: 01/06 till 10/08
Current Treament: Asacol 2400 MG 2X daily, Rowassa nightly, 1MG Folic Acid, 40 MG Prednisone, Remicade, New ChapterĀ® Multivitamin, New ChapterĀ® All-Flora Probiotics, Dolomite Calcium Supplement
Status: Flare!!!!!!!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/29/2008 9:22 AM (GMT -6)   
I've had two GI's since starting Remicade, and they both suggested not using Remicade and an immunosuppressant together, although they weren't adamant about it.

I've been in remission since 2006 with Remicade, and my last colonoscopy showed absolutely no evidence of UC. Caution: that doesn't mean I'm cured, only that the medication is working.
Judy
 
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 11/29/2008 10:02 AM (GMT -6)   
wow guys, thank you so very much!!! it sounds like most of you are having good results!

I wonder if anyone knows if risk of infection is higher on remi than on 6mp? Because i am already immune deficient, i do worry about infections. I have been lucky that i have not had a problem on 6mp.

I also worry about any possible cancer link as we already have a STRONG family history of many cancers (ie, breast, colon, lung, stomach/brain)....i know this risk is probally low, but im not sure about adding to my risk.

any advice on this would be great
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 

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