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Moving to remicade - is it too early?

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Posted 11/5/2008 12:26 AM (GMT 0)
Long story but will try to make it as short as possible!

I had severe diarrhea and pain in August that landed me in the ER

I had a CT scan done and they saw "significant" inflammation of the colon

Saw gastro and he put me on 40mg Prednsione and 12 Asacol a day

Diagnosed me with UC based upon symptoms and CT scan only.

Been doing great until I tapered to 10mg about 10 days ago

Went back up to 40mg prednisone and felt great within 2 days!

Saw dr. today and he wants me off prednisone ASAP - he  wants to be able to reserve the use of it for flares only and is concerned about the long term effects.

So...I am finally having my long awaited colonoscopy on 11/20th

He is thinking of moving onto Remicade

My concern is that I have only been sick since August and am not sure if he is being "too aggresssive" with treatment.

We know I cannot take 6mp (i think thats what its called) because I do not produce the enzyme needed and it could cause a dangerous drop in white cell count.

So..... I am looking to see what your thoughts are if we are moving too quickly to Remicade as well as I would love to hear how you have responded to it.

Thanks so much for everyone's help and support...god knows I need it right now!

I am frightened, frustrated, sad and my head is spinning in circles!

 

Posted 11/5/2008 5:54 AM (GMT 0)
would love if someone with remicade experience would reply!

i need some guidance! smilewinkgrin

Posted 11/5/2008 6:19 AM (GMT 0)
I've had great success with Remicade. After being on Asacol, Pentasa, Colazal, Azathioprine, Prednisone and Entocort with no remission, it got me into remission within one month, and I've now been in remission for more than 2 1/2 years.

Is it too early? Only if you are able to and prefer to live with your symptoms. Only you know how much pain, sickness and inconvenience you're having.
Posted 11/5/2008 11:15 AM (GMT 0)
is 6mp the same as azathioprine?
Posted 11/5/2008 1:13 PM (GMT 0)
Honestly.... I have no pain, one diarrhea bm each morning, no blood.....but my dr. attributes me doing so well to the prednisone.
I guess the true test would be to see how I did without any prednisone.

Y2K bug...yes...6mp is azathioprine which I cannot take
Posted 11/5/2008 2:47 PM (GMT 0)

Hi Michelle,

Let me tell you about my experience with UC and Remicade...I think it will help you. Please read the whole post...I know it's long but it will help you.

  • I was diagnosed with UC about 3 years ago.  I developed it after having my son though ignored the symptoms for about a year and attributed them to post birth issues thinking I had hemrhoids or something like that.
  • took asacol from the lowest to the highest dose with no improvement
  • ended up in the hospital for 4 days with a flare that sounded similar to yours and was treated with Prednisone to get flare under control. Later had a colonscopy that showed UC spread to most of my colon after only originally being left sided. Had my doctor recomended Remicade to me at this point, I would have rejected the idea until I had tried all other meds....though in retrospect I WISH HE WOULD HAVE INSISTED I TRIED REMICADE AT THIS POINT SO I DIDN'T WAIST SO MUCH TIME BEING SICK and I wish I would have had someone to talk to so I had some insight to help make a better decision than I did at the time! 
  • Took Imuran to control UC...made me ill
  • Moved to MP6...worked for a while attaining better control of UC but not complete remission.
  • Flared intermitently on this drug and took increasingly higher doses of steroids to get flares under control.  MP6 ultilmately stopped working altogether.
  • This past spring is where is all came to a head.  My symptoms were out of control.  I had immense urgency which seemed to tie me to the toilet most of the day and rendered me practically disfunctional.  I was depressed and the prednisone did a number on my state of mind like it had never done before.  I didn't even feel like the person I knew myself to be.  My disease didn't start out like this...it slowly progressed to this point.  I also had become completely steroid dependant which meant that my disease wouldn't respond to any other drug and when I tapered from the steroids, the flare ALWAYS returned. Surgery would have been the next option and I seriously considered it and even met with a surgeon at PENN.
  • I began Remicade in May and it really didn't seem like it was working...I was still on 30 mg of pred. and didn't see any real improvement especially when I tried to taper off...I was still flaring and it seemed I was worse than ever...However, I did not give up hope even though most people repond almost imediatly...I just wan't! I talked to my doctor about increasing my dose of remicade from 5 mg to 10 mg and he didn't seem to think it would make much difference.  WELL IT DID!  I HAVE BEEN IN COMPLETE REMISSION THAT I'VE NEVER EXPERIENCED BEFORE ON ANY DRUG EXCEPT PREDNISONE.  REMICADE WORKS AMAZINGLY WELL!!!!!
  •  So in a nutshell, IT WORKS! I've had no side effects except dry skin, and I'm so glad I gave it another shot at a higher dose because I was about to give up all hope.  I am completely symptom free and even forget I have colitis.  I'm on no other medication and only get an infusion every 8 weeks.  I am taking probiotics and think that is a good idea for anyone with or without UC
  • There is actually some research that supports the idea that early and more agressive treatments like Remicade can help keep UC from progressing to a more severe case and also helps to achieve long term remission; whereas, if UC is allowed to be treated with meds unsuccessfully over time, remission can be ellusive regardless of the drug treatment. 

I wish you the best and there is nothing to fear about Remicade...it of course has side effects that can be scary, but so does the disease we have...If untreated you can die from UC if in the kind of flare that sent you to the hospital...I'll take the potential risks of Remicade any day over taking prednisone again or over having surgery. 

 

Good luck and if you decide to try remicade I hope it works for you.  I think your doctor knows what he's doing and is reflecting his decision on current research.  You really have nothing to lose but everything to gain if it works.

 

Take care Michelle

Posted 11/5/2008 3:01 PM (GMT 0)
     Here is a potential risk of Remicade.  Be certain you were never exposed to the TB virus.  I believe you are tested beforehand, at least you should be.  I worked in a hospital lab back in the 60's and was exposed to the TB virus.  I also had an aunt (through marriage) who suffered from TB and died at the age of 39 back in the 50's.  We used to visit her and my uncle quite frequently because she was non contagious.  My uncle never contracted TB.  Before venturing on a European vacation in 1967, I was given the skin patch test for TB.  It became raised and I had to have a chest xray.  The xray was negative for TB but the doctor said the test indicated that the TB virus is dormant in my body.  I am NOT a candidate for remicade.  Remicade could activate the TB virus and it could be fatal.  This is what my GI doctor's associate told me.  However, my GI doctor was pushing for me to take Remicade for two years.  I just keep saying NO.  My last flare was a long and painful one, lasting from May through the first week of October.  I am now in remission and hopefully a long one..lol. 

     Prednisone is a nasty drug, but one which helps me tremendously.  I have osteoporosis and high blood pressure, both of which prednisone contributes to.  But at least I am still living.  Remicade has worked for a lot of people and I do hope it works for you.  However, it certainly is NOT for me.

Posted 11/5/2008 3:07 PM (GMT 0)
Just to add: I do think it's essential that you get off the steroids. The long-term side-effects can be life-changing. I've had two shoulder surgeries to repair damage caused by steroids, and now I don't have full movement in my right shoulder. It's not terribly disabling, but a nuisance since I'm right-handed. Steroids used long-term can cause diabetes, cataracts, osteoporosis and a host of other very serious problems. While Remi can have some bad effects, they happen in a very small percentage of people; bad effects from steroids are almost guaranteed if you take them long enough. What's "long enough?" It depends on the person, and you won't know until they start to appear.

I'd say you're right; if you're unsure you probably need to taper off the steroids and see how bad your symptoms are. Then you can make a decision as to whether Remicade is a good direction for you.
Posted 11/5/2008 3:50 PM (GMT 0)
I got dianosed with UC last Nov. and have not been in remission execept on pred. I started Remicade about 1.5 months ago. I wish I would have started it in Jan when my doctor first brought it up
Posted 11/5/2008 5:54 PM (GMT 0)
If I were you I would go for it!!! It sounds like the other stuff is not working. You need to get healthy and get off the darn pred.

let us know what you end up doing.
Posted 11/5/2008 7:13 PM (GMT 0)
Just a clarification - 6mp (mercaptopurine) is not Imuran (azathioprine) - these are 2 seperate medications however, they are the same type of medication (immunosuppressents), just broken down differently in the liver. 6mp is the pure form while Imuran breaks down into 6mp. If someone lacks the enzyme to break either of them down, they are not a candidate.

Michelle, have you tried using a steroid enema instead? It has less steroid.
Posted 11/6/2008 2:06 AM (GMT 0)
Daughter is on her 2nd infusion of Remicade. The first week it worked like a charm, now on week 3, she is slipping a bit. Back up to 4-6 bm's with a little blood. Still way better than she was--think she was up to 20 bm's and could not function-dehydrated and hospitalized.
We'll see what they say at the 3rd infusion on the 17th. No side affects to speak of. It seems to be helping, and nothing else has--no remission since last Jan, when she was diagnosed. She did have the TB test, and they are watching closely for allergic reactions. I think is is liquid gold.
Will keep you posted.
Posted 11/6/2008 3:55 AM (GMT 0)

I started Remicade in Febuary of this year and it started working pretty quickly. I was in remission by end of March. However, I started flaring midly end of Aug and got my Remi infusion bumped up two weeks to try to get things back under control. Also started back on pred. I still can't seem to get over the hump though. This flare is not bad by any means but I'm not doing as well I was March thru August. My next Remi appointment is in 2 weeks. I hope it improves things. My GI is concerned that I may have built up a tolerance to it.

V

Posted 11/6/2008 6:46 AM (GMT 0)

hi michelle,  sorry to have you here, but its a great place for support. its been a long time since i've posted. been a lot going on.   I was on remicade starting about 1 yr after i was d/x with uc.     brief history. i lost 25 lbs in about three wks, couldnt stay out of the loo for more than an hr at the most. was hoptitalized for a week, i couldnt keep any thing in. 1st scope i was d/x with collagenous colitis. my gi loaded me with  imuran, asacol, and some other meds. i dont remember them all. but it was un-responsive to all the meds.   i got a referral to shands med in fl, the gi dr. read the same scope report as the 1st dr did, and said it looked like crohns. he loaded me with pred, 40 mg, imuran, asacol,entacort, steroid enemas, and some other meds. gave the meds time to work, did another upper/lower, and this time my(new) gi and the shands dr both agreed it looked like uc.  my gi suggested remicade.  after the 3rd infusion, i turned a nice shade of canary yellow. so, back to the hosp. for the 3rd time in a year. but i m a rare case, i've also got PSC. which is y i turned yello. i ended up with j-pouch surgery, cuz i had to come off most of my meds, and ended up at 125 lbs from 180 lbs.     my point is, i'd wait till u have the scope done and they can see whats going on in there b4 you start the remicade. i m not trying to scare you.  its a great drug, and most people tolerate it very well. but at least wait for the scope. and,yes, you need to get off the pred asap. its nasty, and does a lotta damage.  i was on it for 1 1/2 yrs, and now i have osteoporisis, among other stuff. i shattered a bone in my neck. poss fracture in my lower back. spinal stenosis, which might? or might not be related.                       i hope this helps a little bit.   i hope you feel better soon. i know its scary as  hell. and its worse because there are not a lot of people to talk to that can relate.  but you've got good people here that understand.         keep us posted ,   jj       44 yr old male                                                                                                                                                 

Posted 11/7/2008 2:26 AM (GMT 0)
THank you so much to everyone's responses
A few answers....I am scheduled to have my TB test done on Monday and had a chest xray done last week.
I love my doctor and have the utmost faith in him.
He wants me off the prednisone and I appreciate his wanting to see me well
Like I said - since I just got sick in August - I didnt anticipate that I would moving onto Remicade so quickly so I was scared and taken back by this.
Since I feel so great right now.... I was hoping that I was okay
As he explained to me...the only reason why I am feeling so good is because I am on 35mg of prednisone!!!!!
Although I have minimal side effects now - I do know the long term effects.
With that being said.... I feel a bit more comfortable with "maybe" moving onto Remicade after my colonoscopy.

Speaking of colonoscopy....I have never had one and will be having my 1st one on Nov.20 th.

Any suggestions for getting thru the prep????

Thanks again to everyone!
Posted 11/7/2008 2:49 AM (GMT 0)
Michelle,
Just a note on how you're digesting all this information about your health in such a short period of time...you're doing a great job with it. I know it can be scary but it sounds like you really want to inform yourself and make smart decisions once you're informed. Good for you! You sound like you're in great hands and I wholeheartedly agree with your doctor when he says you feel as good as you do because your on 35 mg of pred...that's a pretty high dose...I've been there and double that! It's hard to think about moving forward with any treatment when you're feeling so good... I was in the exact same predicament every time I was feeling great on Pred. I guess I didn't really respect or appreciate the power of that nasty but necessary drug.

Anyhow, you asked for advice for prep for the colonoscopy (which i might add is a very pleasant experience...it just feels like you've taken a great nap if you are sedated). Follow your doctors directions to the T about what to eat and not eat prior to the procedure. When taking Miralax be sure to mix it with gatorade (That makes it tolerable). Expect an evening on the toilet and an evening of nausia. I'm not sure what causes the nausia?!?!? gOOD LUCK TO YOU! I REALLY FEEL FOR YOU BECAUSE YOU SOUND SO MUCH LIKE THE WAY I WAS IN THE EARLY DAYS OF MY UC.

Best of health!
Posted 11/7/2008 4:06 AM (GMT 0)
Thanks Sandra...it is alot to digest....I have learned more about the digestive systems, bowels. medicine in 3 months than I ever would have learned in a lifetime! (or ever wanted to know! :) )

I have to try to stop myself from researching "too" much since I get anxious and overwhelmed at some of the horror stories.

But I do want to be informed as much as I can be..... my dr. even complemented on my questions this week given the fact that this all still so new to me.

At 37 years old, married with 2 children ( 5 years old and 12 years old)..... I want and need to be healthy for my family and of course myself...but my kids need their mom and they need me to be well!

I got laid off from my job in June which turned out be a blessing since I got sick in August..... I dont know if I could have handled the "initial" stage and hold onto my job at that time.

The one good thing is that I have decided to go back to school and pursue a nursing career - one that I put off because of family and money issues.

I know it seems kind of "old" at 37 to change careers ( i have always been in sales and management) but this illness has made me re-evaluate my priorities and my desires in life! Some people think I am crazy but I know it is where my heart is!

Gee... I think the "prednisone" is talking now! Yes... I tend to get very emotional on the prednisone...I even cried when I voted the other day...my husband thought that was hysterical!

I am so appreciative of everyones support here...it is so refreshing to talk to people to understand and dont just "try" to

You all are an amazing group of people with knowledge, compassion, care and concern!

Thanks again!
Posted 11/7/2008 4:57 AM (GMT 0)
My best tip for the prep: whatever unpleasant concoction you have to drink, use a straw. Sucking the liquid into the back of your mouth gets it past mostt of the taste buds and makes it a lot more palatable.
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