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$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 5/1/2008 11:29 AM (GMT -6)   
Hiya.

Met with my GI yesterday. He says my only option at this moment is Remicade. He's convinced that as soon as I'm done with this round of Prednizone(20mg at this moment in time) that I'll begin flaring again. I have to decide within the next week if I'm going to start Remicade.

I have a lot of hesitation about new drugs, I've had really bad luck this year with trial and error. Its been all error. 6-MP and Imuran both put me in the hospital for Pancreatitis, as well as setting off my CVS (Cyclical Vomiting Syndrome). I've spent 12 days in the hospital over 3 different visits, I have no sick time left at my job and used all but 2 of my vacation days because of so much missed work.

If I have an adverse reaction to Remicade it will be that much more serious. I just want my life back. I don't think I can handle being in the hospital anymore, not just for myself but the people around me have to go through it as well.

k thanks for listening.
EGDOL KCALB EHT NI MI


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/1/2008 11:55 AM (GMT -6)   
what do you propose to do aside from Remicade? I understand yuor frustrations, I do...but I think the adverse Remicade reactions are quite rare. And mind you, my 2nd infusion put me in the hospital for a week, in ICU, with strep pneumonia, drug-induced hepatitia, bacteremia, & a whole bunch of other gross stuff. Even with all that, I went back to it & am happy I did so. You have to take the chance that Remicade may give you your life back, which is what you want. Or if not, then what would you like to do? Do you think you'll flare when your pred course is done? Why can't you wait & see what happens, then make a decision? Your GI must understand your hesitation.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/1/2008 12:16 PM (GMT -6)   
I was hesitant to start remicade as well. I had my 3rd infusion three weeks ago and after 2 yrs on pred am finally off!!! I took my last dose of pred on monday. It's the best feeling!

I have had no side effects at all thus far from the remi and am feeling better than i have in a long time. I'm not completely out of this flare yet but at least the remi has gotten me off steroids.

It's hard to deal with a chronic illness, especially when you are hospitalized so often. Has your Gi discussed other options?

There is a humira study going on you could ask about...and there is always surgery to consider if you are tired of the drugs. Though that would be more time off of work.

Maybe it's time for a second opinion? Another Gi may be more helpful with your hesitation.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 5/1/2008 12:36 PM (GMT -6)   
He kind of understand the hesitation, but isn't really concerned with it. I've been in remission for up to 2 years after a round of Prednizone, but he feels the need to start immediately.

Instead of Remicade? Nothing. I was flaring mildly from October until January. It wasnt fun but I could still function, go to work, sleep/eat normally. BUt i know that not being on drugs isnt really an option, I just hate the fact that I'm so dependent on them and they dont even really work.

Sorry, I'm just feeling really bummed out right now.
EGDOL KCALB EHT NI MI


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 5/1/2008 12:43 PM (GMT -6)   
kb5 said...
I was hesitant to start remicade as well. I had my 3rd infusion three weeks ago and after 2 yrs on pred am finally off!!! I took my last dose of pred on monday. It's the best feeling!

I have had no side effects at all thus far from the remi and am feeling better than i have in a long time. I'm not completely out of this flare yet but at least the remi has gotten me off steroids.

It's hard to deal with a chronic illness, especially when you are hospitalized so often. Has your Gi discussed other options?

There is a humira study going on you could ask about...and there is always surgery to consider if you are tired of the drugs. Though that would be more time off of work.

Maybe it's time for a second opinion? Another Gi may be more helpful with your hesitation.


He's actually the 3rd GI I've been to. I feel more comfortable with him than the others, especially when it comes to Remicade. He's one of the more prominent figures in the use and research of the drug. I'm just tired of feeling like the drugs are causing more problems than they are solving.
EGDOL KCALB EHT NI MI


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 5/1/2008 12:58 PM (GMT -6)   
$360,

I know exactly how you feel because I was there...for years I used up all my sick time due to uc because I was either too tired to get to work or too sick. I was also on Remicade before I took matters into my own hands.

If you want to try a diet approach that worked for me, let me know:
playerofsteeldrums@yahoo.com

of course, what worked for me may not work for you since we are all different but it's worth a try in my opinion. I'm eating better than ever before and I'm not on meds anymore and my energy levels are almost normal.


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Post Edited (NuffinButtTrouble) : 5/1/2008 12:18:45 PM (GMT-6)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/1/2008 1:26 PM (GMT -6)   
so are you flaring right now or not? It seems like lately there are a lot of GI's ready to jump on the harder drugs when their patients don't seem to feel the need for them. You really ought to sit down & hash it out with your GI- tell him your reservations. If he's that on top of it, the use of drugs, then he'll surely understand & be able to tell you why exactly he feels you need Remicade when you feel like you're not even flaring too badly.  

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 5/1/2008 2:17 PM (GMT -6)   
Thanks NuffinButtTrouble, what diet are you talking about? I was planning on trying a raw diet, I'm vegan so I'm already half way there. The problem is that the detox is really intense and your not supposed to do it while your on Pred. Since my doctor wants me to start Remicade before I finish Pred, that pretty much rules the diet out (assuming I decide to take Remi). Sounds like you've been through quite a bit in a year and half!


Eva Lou: I'm not flaring now, Prednisone works really quick and effectively on me, I'm also using Asacol and Rowasa which are effective as well. I couldn't agree more that GI's are too quick with the harsh drugs. I've never really had a GI that seems to really take into account my hesitations/concerns, it just dosent seem that important to them... Frustrating right? Again, he is totally convinced that as soon as I get off Pred I'll start flaring again, which has NEVER happened. the shortest amount of time i'Ve gone between Pred cycles is 8 months, and that was only once.

Part of where my frustration is coming from is that I HAVE been drug free and in remission for long periods of time and maintained it myself... I want to get back there but it not on the table when GIs are involved.
EGDOL KCALB EHT NI MI


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/1/2008 5:03 PM (GMT -6)   
I talked to my doctor about Remicade which we are considering as well. I showed him the article that was posted on here a while back saying that Remicade was the 6th most dangerous drug. He animately disagreed. He strongly considers Prednizone to be more dangerous which I guess is why he pushes the Remicade. It made me feel a little better about it.
Jessica 26/F On Entorcout again...
dicyclomine 10Mg before meals/bed
Citalopram 10 MG
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/1/2008 5:12 PM (GMT -6)   
to be honest, it seems like your GI is jumping the gun on the Remciade- I've never heard of it being used except when one is in a major flare, or has become steroid dependent. Which it doesn't sound as if you are, if you can go 8 months between pred courses. I believe the definition of steroid dependency is the inability to come 'rodis without flaring. You need to tell your GI your concerns, & if he is dismissive, find a new one! I guess I'm lucky in that respect- my GI has been the only one I've had since my diagnosis. He's been telling me to get my colon out for the past 2 years... I'm like "Nope! So what other tricks do we have up our sleeves?". I know he must get frustrated with me, but he does understand my reluctance for surgery, as well as my willingness to take any & all drugs out there! Which he doesn't really agree is best, considering the potential risks involved with some of the drugs. But- don't let him talk you into doing anything you're not 100% in favor of- even if it means fidning another doctor, it's worth it if you are happy with your care.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 

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