In a bad flare Remicade?

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turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 6/10/2009 10:16 AM (GMT -6)   
Have been diganosed with this disease since December and was only able to achieve one month of remission with Prednisone and Lialdia. The prednisone cause me to become diabetic and the side effects were terrible on me. I am now back in a bad flare only going 2-4 times a day but its mostly blood and mucus. Just saw my DR and he wants me to continue 4 Lialdia a day, Rowansa, and start Remicade. Has anyone else used or had any luck on Remicade. After reading the website and all of the side effects I am pretty nervous. Really running outta options...prednisone has so many side effects, 6MP scares me and so does Remicade...Any feedback would be greatly appreciated

Post Edited (turnpkegates) : 6/10/2009 10:10:38 AM (GMT-6)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/10/2009 12:01 PM (GMT -6)   
I've had terrific success with Remicade. I too was very sick when I started; could hardly even function. Remi has given me my life back. I don't take any other meds but that at this time.
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 6/10/2009 12:10 PM (GMT -6)   
how about all of those horrific side effects and the fact that it is a new medication?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/10/2009 12:28 PM (GMT -6)   

I haven't had any horrific side effects, and there are lots of new meds out there for all sorts of problems; I figured the alternative was to either go on flaring and being very sick or seeking some sort of relief. The question I asked myself, "Is flaring all the time better than meds?" At that point the meds were a better option for me. I'd tried every other med, every diet, every natural way to take care of this since I've never been on any meds before. Yep, that's right. I've always been the person who watched what I ate, taken the holistic way. People were very surprised when I was dx'd with this, thought I was too healthy to have it! When it came to making a decision I must say it was an easy decision for me. And I've never looked back. I cannot determine what tomorrow will bring; I've had friends die from cancer that were trim, fit, and were vegans. I cannot worry about something I don't know.

I do know that I feel excellent, have resumed my life, work out regularly and can eat all the good food I want. I stress good food, because I've never been a junk food junkie. When I was flaring I could only eat peanut butter, applesauce and yogurt. I think making a list of the pro's and con's might be a good way to sort things out. Since I work a full time job, have a husband, and aging parents....I live a fast paced life and flaring constantly wasn't an option for me.


Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/10/2009 1:20 PM (GMT -6)   
I'm not looking at having to start Remicade or any of the "stronger" drugs, but I've decided that if the 5ASAs quit working for me, I'd rather jump to Remicade and skip Imuran or 6MP. There's some research that shows that using Remicade earlier rather than later results in a better outcome.

You could try and see what happens with the addition of Rowasa before starting the Remicade. Maybe give it a couple of weeks and see if it helps. Rectal meds work wonders for a lot of people.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/10/2009 1:23 PM (GMT -6)   
I was also nervous when I read all the side effects, and I work closely with animals so I was afraid of fungal or bacterial infections, but with my July infusion I will have been on it for two full years with no illnesses or infections (some respiratory issues that hang on longer than they used to, but nothing too bad). I tolerate it very well and my health is much much better on it. My remission is still a little iffy and I am also taking four Lialda a day as well as Canasa suppositories, and I have to have my infusions every six weeks (more typical is eight weeks), but right now, four days after my last infusion, you wouldn't believe I have UC. I'll feel wonderful until about five to five and half weeks from my last infusion, then I will start to flare, but with my next infusion I feel better the very next day.

I have had no side effects whatsoever from the Remicade, but Prednisone left me with long-term side effects and two weeks on Imuran almost killed me.

I am concerned about the long term effects of all the medications I am on and will likely have the jpouch surgery at some point, but for now I am doing well and happy to have my colon (which an October 2008 colonscopy showed was almost completely HEALED).

The side-effects of Remicade seem to be rare and certainly other meds for UC have terrible side-effects without being nearly as effective.

The process will take three or more hours the first time, but as your tolerance is proven they can infuse faster, I am usually out in about two and half hours. Bring something to read, perhaps an iPod, Zune or other device to keep yourself entertained. I like to bring along my breakfast and my needlepoint project. Some people report fatigue afterward, but I always feel GREAT.

If you feel you're going to obsess about the medication however you may want to explore the surgical options, most posters report high satisfaction with their post-surgery lives.

Meesh
47 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!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; 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


murf28
Regular Member


Date Joined Jan 2003
Total Posts : 78
   Posted 6/10/2009 3:23 PM (GMT -6)   
I have had great success in healing my colon with Remicade. However, I have also had some side effects from the medication. I have extreme pain in my joints after infusion, low platelet counts, and hives of my face, forearms, and chest after sun exposure. These side effects have worsened over time and are indicative of a Remicade induced Lupus.

I had a colonoscopy this morning and my colon looked beautiful! The Remicade has done wonders in healing me. It was my last option as I have tried everything else available. Even so, my doctor and I have decided to discontinue the Remicade because it appears to be doing other harm to my body. Since I am doing so well right now (colon wise), I am planning to try to maintain remission with Asacol, diet, and supplements. If this does not keep in remission, we will try Humira...hoping that it does not produce the same issues Remicade has.

It is a big decision to start Remicade. I was scared to death when I started, but like many others on this forum it was either give it a try or continue to suffer from this disease. I was very sick when I started and had been for 2 1/2 years. Remicade really changed my life. You have to weigh the pros and cons. You also need a doc who will monitor you very closely on this medication and listen to your concerns. I wish you the best of luck!!
35 year old female
diagnosed in April 2002
current RX:  remicade, vitamins
previous RX:  prednisone, asacol, 6mp, imuran, methotrexate injections


Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 6/10/2009 4:08 PM (GMT -6)   

I'm interested in the answers to this question too.  I'm pretty much in the exact same boat.  I am in the process of tapering from the prednisone.  It hasn't gotten me into remission.  I have been on 40mg since March 4th.  I am also having problems with the sugar now too.  I have a few questions:

 

1)  When you stopped the prednisone did you still have problems with sugar?

2)  I saw in some information on Remicade something about not using Remicade if diabetic.  Is this true?

3)  If given the option between imuran, 6mp or Remicade which would you do?  All see pretty scary to me.


Diagnosed Friday, February 13, 2009
Colazal 3 tabs 3X daily
Prednisone 40 mg since 3/4/09
Multivitamin
Zantac 1 tab 2X daily
Probiotic


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 6/10/2009 9:23 PM (GMT -6)   
I cannot answer all of those, but Remi is the only thing that has worked. Doc suggests that perhaps my daughter was too far gone for the 6mp to kick in without it. It took 5 doses, so we were a rough case. We too have some symptoms of Lupus(high ANA, Protein in urine etc), but the pleasure of the Remi has been wonderful for now. Reminds me of
"other that THAT, Mrs. Lincoln, how WAS the play?". I know....but the remission is fab. And, very current research suggests that staying on 6mp/Immuran WITH the Remi. is the best approach to not build the antibodies against it, and to keep the patient in remission. Will keep you posted. We took another 10mg per kilo today. It is why they call it a Practice....they do it on us!
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 6/10/2009 10:48 PM (GMT -6)   
Same case as Katmom's daughter here. Bad case of unresponsive UC.  I have been hospitalised 2 weeks ago (this is my 1st post since.. hi everyone :) ) and my decision was to have surgery since no meds seemed to work.  When I got to he hospital I was so weak I was in shock, dehydrated, with weird muscle spasms. I was too weak for the surgery and I decided to give Remicade another try. They gave me a 10 mg / kilo (double dose) and it seems like I am on my way towards remission (miracle! yay!).  I am on Imuran too , and as Katmom said, my doc also told me that recent studies show that the combination of Remicade + Imuran (or 6mp etc) is helpful in maintaining the effect of the Remicade treatment. 
 
I had nausea with Imuran a couple of times, Remicade doesn't give me any side effects. 
 
I have been on Imuran and Remicade for about 2-3 moths now...
 
Hope it helps, I know taking new drugs is scary, especially immunosuppressants. Pharmacists are very well informed on the topic, maybe you could have a chat with yours :)
26 Years old
Diagnosed with severe pancolitis 03/09 unresponsive to medical treatment
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
Considering total colectomy + J pouch a couple of months later


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/10/2009 11:35 PM (GMT -6)   
I was diagnosed in 2001 and flared continually until March 2006, when I started on Remicade. By flare, I mean 10-30 stools a day, blood and mucus every day, lots of pain and extreme exhaustion.

I always take a Zyrtec before I go to the infusion center, which helps in preventing reaction. The only side effect I've had is mild tiredness after the infusion. I've had two short-lived colds since starting Remi, and one sinus infection. No other infections. I've had surgery twice with no problem.

Only you can decide what is right for you, so I do encourage you to explore all the alternatives.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 6/12/2009 4:41 PM (GMT -6)   
Has anybody swithched from Humeria to Remicade and had good luck doing it.
Diagnosed Crohns/Colitis Jan 2007.  Allergic to 5sa. Currently taking Humira and Hydrocortisone Canasa suppositories.  Budesonide
Colitis in last part of Colon.  Currently bleeding every bowel movement. 

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