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SIRPOOPSALOT
New Member


Date Joined Feb 2008
Total Posts : 6
   Posted 2/23/2008 5:54 PM (GMT -6)   
Hello everyone!!
Just wanted to get some insight on some issues. I have had UC for 18 years now. I am 40 yrs old married
with 3 beautiful kids...(4,2 and 6 mos.) I have in the past year have had really bad proctitis, which was never part of my uc (usually was in upper left). Anyway i have been on Canasa, Steroidal enemas, colazal,
which i think sometimes makes it worse...and my unwanted but needed drug Prednisone. Except for prednisone i stopped all the other meds, they didn't work for me. My GI wants to try me on 6mp but so many people i know have had bad reactions to this drug. I always bring up remicade, which my nephew is on for his crohns and it does wonders for him, and my dr. says that i really don't qualify for that. That seems a little bs for me. Why wouldn't he prescribe something that does well for alot of uc patients. Now i am not on my death bed but my quality of life sucks. I am a land surveyor and my job is outside ALL the time, i won't bore you with all my disaster poop stories but come on, he should have a little sense to try  this at least. I am thinking of trying another dr. that wil try it, which is such a pain to switch drs. but i feel i need to try something new..This is a depressing disease at times, my wife will never fully know what it does to me but again i don't expect her to be my mother. Anyway, any insights...oh yeah i am going to get a bone density scan soon...real fun

UC Mom
Regular Member


Date Joined Jun 2007
Total Posts : 146
   Posted 2/23/2008 6:25 PM (GMT -6)   

I have no idea why your doctor does not think you are a candidate for Remicade.  My son is 17, and we chose to try the 6mp first, because it will be hard for him to schedule infusions during the school year.  He has already missed so much school, due to a terrible flare since Oct., and our infusion clinic is only open 8-5, Mon. thru Fri. He is on Pred. and that is helping so much.  So far, no side effects, and he is doing great.  Got to play almost the entire game of his first lacrosse game of the season today, and scored 2 goals (yippee). Three weeks ago, I didn't think he could even be on the field.  If you really want to try Remicade, maybe you need a new doctor.  My son has proctitis also.  Good luck to you. We will definate start Remicade in June, if the 6mp does not work out.

 

 

 


UC Mom
Son diagnosed 10, 2006 at age 15
Prednisone
Culturelle Probiotic
Multi Vitamin


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 176
   Posted 2/23/2008 7:20 PM (GMT -6)   
I took Remicade, but only on three occasions. I didn't know there was a "qualification" to have Remicade infusions. That's weird that your GI would discourage you from this. I personally love it because I believe that it stopped at least 2 possible flares and helped to jump start me into my now 5 year and some months remission status.
Age 17
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 2/23/2008 7:20 PM (GMT -6)   
The remicade is a much more potent drug, with much higher risks (tuberculosis!), than the 6MP. That's not to say it isn't effective for many people, but your GI may feel that it's too strong a medicine to take if you haven't at least tried the less risky classes of medication. I'm on imuran and haven't had any negative reactions to it-I thought I had some mild hair loss at first, but I think it was actually the prednisone that caused that particular side effect.
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Still on prednisone (10 mg) taper, two more weeks
Experimenting with low residue diet, live culture yogurt and probiotics


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/23/2008 10:23 PM (GMT -6)   
you sound like me 7 weeks ago.  doc wanted to put me on 6-mp.  no way.  instead i did the specific carbohydrate diet, and am in remission.  i was on my death bed too, and it wasn't looking good. i was tempted to start the 6-mp, but instead opted to give the diet a month trial.  it's working so far
 
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Post Edited By Moderator (Red_34) : 2/24/2008 6:08:34 AM (GMT-7)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/24/2008 12:03 AM (GMT -6)   
I am in the same boat health-wise. When I was diagnosed with UC, it was left-sided only. Now I have proctitis only. My ulcer got bad quickly (I blame myself for messing with my meds dosage and not quitting my GI visits for a while). So by the time I found out my rectum was soo bad, there wasn't time to try Imuran or 6mp. I am not sure if more people have reactions with those than Remicade. I would have preferred to try those first if I could have. I could understand that your doctor wanting you to try the pills first... I don't understand what he means about you not qualifying... the only thing I can think of is that you haven't tried all other pill/rectal meds first. That may be what he means, maybe? He sounds kinda like a jerk. Sorry you're having such a hard time.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/24/2008 8:58 AM (GMT -6)   
Welcome to HealingWell, Sirpoopsalot. I think most doctors try to use the more established drugs with a longer history first, then move to the newer ones. I've noticed here on the forum, though, that some doctors now seem to be trying Remicade before immunosuppressants. Both biologics such as Remicade and immunosuppressants such as 6-MP can have some bad side effects, though they are not common.

I have no idea what your doctor means when he says you don't "qualify" for Remicade. Maybe a payment problem with the insurance company? At any rate, I'd definitely ask him "Why don't I qualify?" It may be some outdated protocol he's following.

My strong suggestion would be to get a second opinion. Many of us on this board are on our second, third or fourth GI, simply because we need to have a doctor who's a "fit" with us. So if your doctor isn't communicating with you, it's time to find one who can.

Good luck!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


SIRPOOPSALOT
New Member


Date Joined Feb 2008
Total Posts : 6
   Posted 2/24/2008 9:29 PM (GMT -6)   

Thanks everyone for your input. I am going to call my Dr. tomorrow and once again ask to be put on Remicade. If he gives me the same crap about i wouldn't qualify i will just have to get a second opinion. Have alot of you in this forum had good results with Remicade? I am still afraid to go on 6mp, sounds like a nasty drug with potential harmful effects. My sister in law when on that and had to be taken off of it because her liver rejected it. Anyway i am at my wits end with this disease. I know when i go down to 20mg of pred i will be doing 10 to 15 squats again. I think i am becoming immune to the pred. My highest dosage was 60 a day. I just want to get on something besides prednisone for once. I like others become addicted to that drug because it gives me temporary relief. My Dr. wants me to start Lialda, but i don't want to get on a drug that might be like colazal and doesn't work. Has anyone taken this new drug and if so what were your side effects??


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/24/2008 10:25 PM (GMT -6)   
Hi and welcome! Yes, I've had great success with Remi and I've been on it for almost 3 years and feeling well; no side effects, no symptoms, no flaring. Every once in a while I get tired or achy joints, but that is it, and it's usually for about a day. Nothing to complain about! Hope this helps, and again....welcome!
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 2/25/2008 1:43 AM (GMT -6)   
I know it might seem scary, but frankly, all of the drugs for UC carry pretty risky side effects! I was told I was part of the 1-2% of people who had my kind of reaction to 6-MP. It was great for me up until that point. You'll find a lot of people on 6-MP or Imuran on this site! I would really consider it!! Also, many docs don't know about Prograf (Tacrolimus), but it's been my miracle drug and has kept me off pred and in remission for almost a year now!! It's an oral medication that is also an immune suppressant, just in a different way from Remicade, but no transfusions to schedule or deal with. And I've had NO side effects on it. I'm not saying your doc might not be the right person for you, but I'd highly suggest considering all of your options before going on injectable, long-term medication.
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/25/2008 2:16 PM (GMT -6)   
Welcome to HW! Love the screen name :)

I am on Imuran - after much research. I found that the side effects I was having from pred are much worse than the usual side effects from Imuran/6-MP. Now, there can be some severe side effects, as with any drug, and you must be closely monitored while on Imuran.

Have you tried any other 5-ASA meds beside Colazol? Colazol didn't work for me, but Asacol did.

I think you should find a second opinion - and soon! I am a Civil Engineer and understand how this can affect you as a land surveyor - kudos to you. Your GI should have a treatment plan for you - s/he should be able to tell you what the side effects and benefits are for all of your meds.

Good luck!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/25/2008 2:46 PM (GMT -6)   
Hi and welcome to HW.I think you should get a second opinion too, your health is the most important thing here and you need good health for your work.
Good Luck
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]

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