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Posted 9/16/2011 12:28 AM (GMT 0)

Hey i was wondering if i should take Renicade or not. I have an appointment for an infusion tommorow and i am worried about taking it. I has so many side effects and i may not work. Also i can cause cancer and infections and its like it so scary to me cause i have dont wanna pile on my deseases. I would like to tell you my story and give me option of what you think i should do. I wanna really get an opinion of another GI and get blood work (since i cant get any other allergy work since im on predisone) to see what im allergent to like milk protien, eggs, glutein, to see if im doing somthing wrong thats keeping me from remission. I feel like i need another week but im bieng rushed since i have been on a high dose of predisone for so long just a little confusing since i dont know why im not getting better. Heres a summury of my story and feed back would be apprecated

So i was diagnosed with pancolitis on 8/1/2011. I have been on 40 mg of predisone and 50 mg of predisone ever since. I was on 40mg until around august 30 and i had my dose up to 50mg until september the 8th( After 3 days on 50 mg my sythoms started to get better no diaria no urgency only 3-4 times an day and that lasted 5 days unlil my gi told me to wein off back to 40mg. After 2 days my synthoms showed back up and i am having stomach pains and urgency and no more solid stools. Should i take the remicade and can i afford not to in order to get a second opinoin cause to me surgury is not an option for me at this point either is catching cancer..

Diagnosed with pancolitis 8/1/2011 at 22.
Currently on 6 Asacol HD, 40 mg Prednisone, Enema, Dexilant when my stomach hurts
Vitimans: one a days, fish oil,Calcuim and Vitiman D , Probiotics. ,
Tumeric and ginger teafrom .

Posted 9/16/2011 12:44 AM (GMT 0)
Hey, I am 22 also and was diagnosed in December of last year. No medicine has worked for me so far, honestly I am contemplating just having a colectomy. But, I swore to myself I would never take remicade. I had the same fears as you about the side effects, cancer, infections. But it is up to you! I wish you the best of luck! Keep me updated on your decision!
Posted 9/16/2011 1:08 AM (GMT 0)
Sorrry to hear about that. Have you been on remicade and what other medicines are you taking
Posted 9/16/2011 2:13 AM (GMT 0)
Hang in there guys, the side effects are a lot less than you think. The percentages are really quite low for a powerful drug.

If you have ANY misgivings though, get more info (from this site) and at least a second opinion.
Posted 9/16/2011 2:18 AM (GMT 0)
Perhaps it's a bit early to be thinking about Remicade? You've only been diagnosed a month ago yes? Especially with pancolitis, it can take a while to heal and a month is really not that long of a time in our Uc world. There are other medications you can try such as Apriso, Lialda, Colazal along with steroid enemas - you are using an enema right now still? Rowasa? Perhaps you can not even tolerate the mesalamines such as Asacol, Apriso, Lialda. Some people can't take them and in fact they can make matters worse.

Have you tried fiber supplements to help firm up your stool? Personally One a Day vitamins make me worse, so perhaps switching that up a bit and see if it helps? Sometimes even fish oil can cause issues.
Posted 9/16/2011 3:15 AM (GMT 0)
it's not like you have to take remicade forever, you know. but if you really don't want it, nobody can force you to take it. have you tried 6mp? that is supposed to help your inflammation go down.

i think it depends how much you are suffering. sometimes, this disease comes on really strong and if your life revolves around the disease, then i'd say to try the remicade. the side effects really aren't bad at all- just headaches for me. i don't plan on being on it for the rest of my life. and yeah, before i started it, i read about all the horrid side effects and is it possible to get them?? yeah, it is. but all drugs have side effects and you just have to weigh your options.

if you go to your infusion, let us know how it goes. i was terrified before my first one but all you do is sit there for a little over 2 hrs with an iv.
Posted 9/16/2011 12:52 PM (GMT 0)
yea its been more like 1 month in a half 45 days but im a little worried about the predisone usage in a high dose. But getting on more antiimmune drugs like remicade which has worse side affects kinda worrys me too. I just wanna know if u guys think i have a week or too to spare in order to find like the best GI in my area and see whats really going on.

@ Banana girl- When were u first dianosed and how was your pred tamper?

@ Red 34 i take this mesalamine rectal enema i may have to look into steriod one.

Idk my disease was really strong in the beginning and other than my even though my social life and my career have suffered things could be worse

Posted 9/16/2011 1:59 PM (GMT 0)
well I have gotten worse side effects from sulfasalazine/asacol/lialda and prednisone (kidney disease and liver disease).......so far no new diseases from remicade.
Posted 9/16/2011 3:10 PM (GMT 0)
how many times were you on predisone before you relized that you had the liver and kidney deseases and how high of a dosage and whening period? And what does this make it your sixth month on remicade?

 

Posted 9/16/2011 3:16 PM (GMT 0)
I was on Remciade from 13-18 years old with a dual therapy including 6MP. My group at the time had the highest chances of getting cancer with a combo therapy. Mind you that the majority of cancers that were induced from Remicade were teenage boys that were on a combo therapy. I was on it for 5 years and I didn't end up with cancer, well at least that I don't know off. I'm going to be starting Humira soon. I'm at the point of my life where I'm not scared of it anymore. I'm a 21 year old college life and I just want to live a normal life. I would rather live a short enjoyable life, than a long miserable one. That's just my opinion. Also, long term prednisone usage at a high dosage like that is most likely worse than the side effects. Medicines have to report every single thing that happens. You would be surprised how many can cause death. (highly unlikely)

I Understand you being scared, just think about it though! Also, people who tend to go on prednisone first instead of other drugs end up having to get their colon removed or going on the big drugs. Not everyone, but a majority.
Posted 9/16/2011 4:11 PM (GMT 0)
Yea true im not really scared i just wanna be healthy and live life and not jump into making perminate decisions. I would rather live a enjoyable life too than a long sucky one. Quick question bosnianboy12 do you current diet and do you think that helps or hurts your UC. And i dont know if this is too personal but what major side effects have you experieced on remicade and 6mp. Cause that prob is the next step for me

 

Posted 9/16/2011 5:18 PM (GMT 0)
I was on pred for for years, began having 'liver' side effects in May of this year, did not find out that was due to the pred until August. I got off pred in June of this year.

Kidney disease I went undiagnosed for 7 years (I went to many Dr's an no one helped me until my new GI).

My 5th Remi is 9/27.
Posted 9/16/2011 11:05 PM (GMT 0)
yea im tryna weigh my options i just scheduled two opinions for next week and ill see were i go from there. Sorry to hear about your liver and your kidneys idk wats worst the desease of the treatment they give you as a temporary bandage
Posted 9/17/2011 1:17 AM (GMT 0)
beatuc, i was diagnosed with proctitis at 17 and then u.c. at 21. i tried all the 5 ASA's and nothing helped. i tried the alternative route for a few months and that didn't do anything either. i ended up in the hospital the beginning of last month and that's when i was basically forced to take prednisone. i didn't have a choice because i was so sick. i started on 40 mg and gained about 35 lbs in 2 days. all water weight. i didn't notice any positive effects of prednisone. i still had a lot of blood, pain, cramping, urgency and diarrhea the whole time. i started the 6mp about 4 weeks ago and that's when i started getting my life back. i'm on a combo of 6mp and remicade and i'm feeling better than i was. there's still trade-offs though. my joints suck, i walk like a turtle, can't work, get headaches, rashes, numbness in my left foot, constipation, bloating, and see fireworks out of my eyes. all of these started last month and i blame them all on my current medications. as soon as i can, i plan on getting off these medicines. if my next colonoscopy is great, then that's what i'm doing no matter what my doc. tells me.

ps- my g.i. actually told me not to taper the pred but i'm tapering anyways because the prednisone did not do me any good. i'm already down to 15 from 40 mg.
Posted 9/17/2011 1:47 AM (GMT 0)

BeatUC2011 said...
Yea true im not really scared i just wanna be healthy and live life and not jump into making perminate decisions. I would rather live a enjoyable life too than a long sucky one. Quick questionbosnianboy12 do you current diet and do you think that helps or hurts your UC. And i dont know if this is too personal but what major side effects have you experieced on remicade and 6mp. Cause that prob is the next step for me

Nothing is too personal. I had no major side effects from any of it. Lived an awesome life! Unfortunately they stopped working for me. I'm going to be starting Humira soon after not wanting to go back on large medicines. I'll see what happens. Of course there is always a little fear, but that's normal. Good luck with whatever you decide to do.
Posted 9/17/2011 9:00 PM (GMT 0)
      BeatUC.....all I can tell you is what my GI doctor related to me back in 08 when I was hospitalized with a terrible flare.  At that time I was battling him for two years because I did NOT want to try Remicade.  He said that if his children were affected with UC he would much rather have them on Remicade than prednisone.  The long term effects of prednisone are devastating.  Take it from me, one who knows.  It has given me osteoporosis (I already have three spinal fractures), uncontrollable high blood pressure and high glucose levels.  I was prednisone dependent for two years before my surgery last year.  However, I was on and off the drug since my diagnosis of ulcerative proctitis back in 1998.

     I was on 6MP for seven years without much success.  I did give the Remicade a shot but it failed after my 3rd infusion and I was on Humira for three months with no change.  All my body wanted was that darn prednisone.  I had a total colectomy with end ileostomy...no j-pouch...last year and am now off all drugs except only 25 mgm of toprol xl for my blood pressure.  When I was on prednisone my blood pressure went haywire even on three different meds at the same time.  My blood glucose levels are normal...off the medicine for that too.

     I wish you well.  I am NOT suggesting you have surgery by any means.  Surgery was my only option if I wanted my life back but Remicade does work for many UC sufferers.  Prednisone is great for helping attain remission, BUT only for a short time period.

Posted 9/18/2011 12:22 AM (GMT 0)
I have had UC since I was 20.   When asacol stopped working after 14 years my doc wanted me to go on either remicade or 6mp.  I REFUSED becuase of the side effects.  I went on Pred for a few months. I know have osteopenia in my hip from the pred.   I finally gave in and decided that Remicade woudl be a better option for ME than 6mp.  I was right.  Best decision that I have ever made.   It started working the NEXT day.   I started it this past december.   All these meds have side effects. I was the first person to get pancreatitis from Asacol back in 1995.  Not even listed as a side effect, then my docs desensitized me to asacol.  So anyone can get side effects from any meds.   If you mix Remicade and 6mp together you get a better chance for cancer.  If you mix any meds together you can get a better chance of getting a side effect.   Most of these meds have been around for 5-15 years. No one really knows the long term effects of them.  

Don't let the potential side effects stop you from using remicade.  The percentages are so small. Have you looked at the side effects of all the other meds that you take?

I did notice 1 side effects from Remicade.  I get LESS migranes now since I have been taking it.  My doc said he never hard of that, then again he never heard of someone getting pancratitis from Asacol when I did either. The majority of people who I spoke with in person are doing great on Remicade and swear by it.

I bet there are more cases of people getting surgery and getting an infection then people taking Remicade.

All I am trying to say, is I had the same fears you did about Remicade and cancer. So far so good.  It really turned my life around.  

You just have to weigh your options. 

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