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would you try remicade if you were me?

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Posted 7/24/2011 5:35 AM (GMT 0)
I'm trying to decide wether or not i should try remicade and i know ultimately it's my decision but "normal" people don't really understand so i thought i'd get you guy's opinions

i'm a 19 year old male ( risky age and gender for bad stuff)

I've had ulcerative colitis for 11 years

i've been taking azathioprine for the last 5 years and it just doesnt work anymore.

been flaring this whole year, missed about 2 months of work, lost 15kgs and is really effecting the quality of my life

i've been taking prednisolone for about 8 weeks and i'm still flaring, havn't bled for about 2 weeks but have had 4 bloody Bm's today

i've been too scared to have remicade in the past but do you think it's time i give it a shot?
Posted 7/24/2011 6:25 AM (GMT 0)
I don't know. You have Chron's colitis, not UC. So I don't know whether or not surgery is a viable option.

There is an increase risk of infections with Remicade. Since I always have some infection of some sort, I'm not a candidate for Remicade. I find it hard to recommend something that can be extremely dangerous for me.

Some things you need to consider are:

How likely are you to get infections?
Will surgery cure you if you have Chron's colitis and not UC?
Posted 7/24/2011 6:27 AM (GMT 0)
well after my last 3 scopes my current doctor is confident that i have ulcerative colitis and he said surgery is an option for me. i don't think im a high risk of infections, i rarely get sick besides my UC
Posted 7/24/2011 6:34 AM (GMT 0)
Have you considered Fecal Transplantation? You're in Oz so if you're interested you should contact the centre for digestive disorders in sydney and check it out! Sorry haven't got the number with me. They're pretty helpful anyone even if you don't like the sound of the transplantation!!
Posted 7/24/2011 6:40 AM (GMT 0)
i'm interested in anything that could make me better without potentially killing me :) i'll get the number off their website and ring them tommorow. i live about a 3 hour flight from where it is i think but its worth a shot hey
Posted 7/24/2011 12:52 PM (GMT 0)
Anthonyv,

If I were your shoes, and I'm obviously not, I would not do remicade - too many risk factors.

But I would try Fecal Transplantation.

Also, and I know we've discussed this before, what happened to the LDN? I think it may help you.

Posted 7/24/2011 1:15 PM (GMT 0)
i seen the doctor about LDN aswell as wellbutrin.

i've currently started taking wellbutrin and will see how that goes over the course of the next few weeks, if it doesnt help i believe i'll push for the LDN. as for the fecal transplant, i think the wait is going to be too long for them to help me
Posted 7/24/2011 1:34 PM (GMT 0)
No one can make that decision for you.  Only you can.  This was my thinking in deciding.  If I have surgery there are problems that could happen from that also.  I just wasn't ready to have the surgery.  I wanted to tell myself that I tried everything before the surgery just in case I had problems with the j pouch surgery or I needed a permenant bag.  This is just my thought though. Also, when I went on the remicade my youngest child was only 9 months old.  So, I was trying to buy time with the surgery because it is a long stay in the hospital and you can't lift and everything else.  She is three now so if I do need it now she will be alittle older and maybe understand that i hurt and can't lift her and no jumping on me, etc.  I have been on remicade for two years now and i have my life back.  My mom and I were just talking about that yesterday.  I couldn't go any where before and I didn't have a life.  While I still worry about having accidents I have never had one on the remicade before it was almost every day.  I also know when I am going to go to the bathroom.  Morning is the worse for me.  I go when I get up and then after breakfast and then after lunch.  I usually don't have to go again until morning.  Sometimes I might go after supper.  I can hold it also.  Not super long but still. 

As far as the risk factors.  I am scared but besides surgery or having a miserable life I have no choice.  I get in one of my moods from time to time worrying about it but I have started worrying less lately.  If you can't live with out worrying about it all the time then I don't think you should try it.  If you will worry once in awhile and are okay with it then try it.  Or do the surgery and then you don't have to worry about the side effects.  Alot of people(I think 95% that have it) are very happy they did it.  You are so young also. 

I hope this helps in your decision making.  I know this uc is hard to live with and the choices we have to make all have risks.  It is scarey and know you aren't alone.

 

Posted 7/24/2011 6:47 PM (GMT 0)
I didn't realise they had colazide in australia...

OK, here's the question...have rectal meds been part of your regimen?

Are you totally off the pred?

Personally, I'd never take Remi....but that's definitely a decision you'll have to make.

q
Posted 7/24/2011 10:03 PM (GMT 0)
I am thrilled with Remicade!
It has improved my quality of life immensely, after decades of dealing with UC. It seemes surgery has its own lingering set of risks and inconveniences. And surgery is still available to you if Remicade doesn't work.
Posted 7/24/2011 11:01 PM (GMT 0)
Due to your age, gender and the Aza, I would definitely hesitate to take Remicade. The risk may be small, but it is a fatal cancer that you can get that is more common in your situation. They recently came out with another warning about this. I forget which cancer it is, but there is no cure.

Tough call. I definitely recommend trying EVERYTHING else including FT, LDN, SCD diet etc. If none of that works, and if it were me in your situation, I would likely skip the Remicade, and go for the surgery if the Dr is sure that you have UC.

Good luck.
Posted 7/25/2011 12:17 AM (GMT 0)
hey quincy, i'm currently on 25mg of prednisolone(was on 40mg and have only managed to taper 15mg in 8 weeks) and i have pentasa suppositories nightly. i've been flaring badly this whole year and really need something to get it under control. i'm getting closer and closer to trying remicade i think
Posted 7/25/2011 7:31 AM (GMT 0)
Maybe consider to also use retention enemas instead of the supps.

Regarding tapering, sometimes alternating the dosage will work with less side effects and flaring symptoms.

eg...25,20,25,20,25,20....20,20,20,20,20.20...20,15,20,15,20,15......15,15,15,15....etc.

q
Posted 7/25/2011 7:54 AM (GMT 0)
If your situation is that bad, maybe you can take your first infusion of Remicade then try the alternative meds.
Posted 7/25/2011 9:34 AM (GMT 0)
i have alot of trouble with the retention enemas, i tried the foam ones the other night and couldnt handle it but i will try the regular ones again. gotta wait a couple of days to order them but i know they work.

as for trying remicade once, from what i've researched im pretty sure once you have it in you your risk of cancer is increased just as much as someone that is having it all the time
Posted 7/25/2011 12:17 PM (GMT 0)
Anthonyv,

How about low dose prednisone, + canasa suppositories + SCD diet + LDN, do that for a few weeks and then see if you need to move onto the big guns, remicade?

Posted 7/25/2011 3:22 PM (GMT 0)
Well, if you decide to do Remicade I would NOT take it with Azathioprine. That combo is REALLY risky for your gender/age group. And most of the cancer cases have been young males taking Remicade in combination with Azathioprine/6MP or Methotrexate. So, there's my 2 cents. Although, for many people the TNFa blockers are just another bandaid. I'm taking them because this is not a good time for surgery for me. But that might be where I end up.
Posted 7/25/2011 3:49 PM (GMT 0)
i realise that risk and thats why i'm so hesitant in taking it

insofla, im seeing an "alternative" doctorr who the compounding pharmacy told me was their biggest LDN prescriber, so im going to beg him to try.

i need to do more research into SCD because i honestly have no idea how to go about it

i dont know if this is related or not but my bleeding had subsided and i started taking wellbutrin, that night i woke up in the night (uncommon for me) bleeding and have been bleeding heavily since, so ive stopped the wellbutrin to see if it clears up. what do u rekon?
Posted 7/25/2011 4:18 PM (GMT 0)
Anthonyv,,

Hope you can get some LDN. Good luck.

As far as the wellbutrin, I think someone posted  something about it recently, you can do a search and see.


 

Posted 7/25/2011 4:39 PM (GMT 0)
Anthonyv,

Did you read this?:

https://www.healingwell.com/community/default.aspx?f=38&m=2132130

It's about unknown, un-publicized side effects of remicade?

 

Posted 7/25/2011 5:00 PM (GMT 0)
Yes, I would try Remicade if I were you. True, you're a male, which is the gender that most lymphomas have been found, but I believe the age group is much lower, pediatric cases. The actual statistics on Remicade are not that frightening. You will probably know within 1-2 infusions if it is going to help, & then you can make a more informed & objective decision on whether or not to stick with it, drop Imuran, etc. I read so many posts on here about people trying this drug, that drug, this diet, supplement, etc. with no regard for what they're taking- it seems short-sided, who's to say the LDN is not some silent killer after all? (I'm being overly dramatic, but... just making a point, you know?). They were both approved by the FDA in 1998, so both drugs have short-term risk profiles. In reality, biologics are the future of modern medicine- not just for IBD but for a whole host of other things.
Posted 7/26/2011 5:45 AM (GMT 0)
thanks everyone for your opnions,

it seems most people on this forum are against remicade, but that said majority of the people on these forums are still sick thats why theyre here.

has anyone on these forums got lymphoma from remicade or any other biologics or is it just people mostly being scared because they've read too much like me.
Posted 7/26/2011 5:52 AM (GMT 0)
I will try it when I have exhausted the other options. I was about to try it a few weeks ago before I had a turn around. I am not against it, I just feel that it's a new medication and we may not know everything about the long-term side effects. Another serious problem with these biologics is that they only seem to work for so long and then they stop working and you're back at square one. Hopefully by then, there are some other options for us.
Posted 7/26/2011 7:28 AM (GMT 0)
Hey Anthony,
I'm actually going to a conference in August that is all about biologics, so I will be glad to get the guts on remicade for you. Don't give up on Borody, even though he's hard to see, there are many good specialists at the centre that can help you.
Cheers, M.
Posted 7/26/2011 7:42 AM (GMT 0)
The problem with Remicade is that it is only moderately effective in the sense that many people don't respond to it. The other problem is that people who respond to it often develop antibodies to it over time rendering it useless. I don't remember the numbers exactly, but after about 5 years only about 1/4 of those who start it are still getting relief from it. That makes it only a stop-gap solution to the problem, not a long term solution. I would probably still try it before opting for surgery but only because a better treatment may come up during the time it potentially buys me.
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