I am getting close to starting on Remicade.  Right now I am in the setting up / scheduling part of the process.  It could happen within a week or two.

Any advice or comments before I start?   Is it worth whatever risks lie ahead?  I was told I will be doing the infusions at 0-2-4-8 week intervals.  Once I hit the 8-week interval, it would continue at that indefinitely.  I am still a little skeptical, I suppose because I function well a lot of time but I am living without a large intestine and I have been told by 2 GIs that my small intestine is inflamed.  

In  other words, I have learned to live with my situation well over the past 19 years.  For the most part, not much has changed.  Just a lot of aggravation, frustration, and dealing with it the way I always have.

Any input is appreciated.

THANKS

 

 

Original Post

No side effects. I did contract pneumonia in April and we could speculate that the immunosuppressive action of the Remicade may have had something to do with that. Also, because I have to take methotrexate with Remicade to suppress renal secretions of it, my liver chemistries are monitored and came back high for the first time in March. I was then taken off Methotrexate for a month and when my liver chemistries returned to normal, I was put back on a lower dosage of Methotrexate (7.5 mg per week vs. 12.5 mg). Other than the above no issues. I did observe another patient develop a reaction to Remicade while I was in the Remicade room with her. She got red and flushed and they terminated the IV. She told me she felt a warm sensation shooting down her side. Other than that I have not seen any reactions in 4 years and I usually get infused with 3 other patients at a time. It’s a 2 hour infusion.

Regarding the patient who had a reaction to Remicade, I heard the doctor tell her they would try Entyvio next. Entyvio has an entirely different mechanism of action than Remicade. It’s the usual plan B if Remicade is rejected or antibodies develop.

CT has had really good luck with Remicade; I did not.  I had a reaction to it.  That doesn't mean you shouldn't try it, but I do suggest you take a few precautions in case you do find yourself having a bad reaction. One, take someone with you during the infusion - a designated driver of sorts. This will keep you safer on the road home if you have an issue.  Two, the actual infusion takes two hours, plus add time for them to mix the medicine - so you could be at the infusion center up to three hours.  If you have any discomfort or strange feelings, tell the nurse who is doing the infusion.  They know what to do and sooner is usually better than waiting if you're not feeling well. (Yep, I learned both these things the hard way!)

I was switched to Entyvio following my bad experience with Remicade and so far I've remained reaction free and it is helping to decrease my inflammation.   Different people react differently to different medicines.  Give Remicade a try and you can always change if things are not working.

Take a risk and see what happens.  You may find yourself feeling better than you have in years.

 

Has anyone experienced or heard of sudden deadly consequences from using Remicade?  By that I mean serious health issues or even instant death.  I understand the problems that can result from a weakened immune system over time.  Is there any way to address that other than regular blood work and doctor's visits?

I am getting close to my start date -- which could likely be some time this week.  

Back in 1994-95 I spent a year on Imuran before my total colectomy.  It seemed it was a pretty good year for me compared to previous.  Before going on the drug in 1993-1994, I ended up in the hospital twice for a couple of weeks each time.  

I think Remicade is the right thing to do at this point.  It seems that if I have some success with it (and I am not holding my breath expecting much), too bad it wasn't around back in the 90s before I had my surgery in 2000.

Thanks.

 

 

capper posted:

Has anyone experienced or heard of sudden deadly consequences from using Remicade?  By that I mean serious health issues or even instant death.  I understand the problems that can result from a weakened immune system over time.  Is there any way to address that other than regular blood work and doctor's visits? 

As to your first question, no. As to the second question, when your immune system is weakened, by drugs intended to do so, the first issues that usually arise are on the skin, which is your body's first line of defense against bacteria, and other microorganisms..  Before I was ever on Remicade, I was on antibiotics, and Entocort, which alter and suppress your body's immune response, and I had occasional bouts with yeast infections and warts.  On my skin.  Since I started Remicade I did not have those issues but I did develop pneumonia, after being exposed to a coworker who also had pneumonia.  Do we know for sure that Remicade led to the pneumonia? No, but I have since recovered from it.

Eventually we all get older and our immune systems will weaken with age anyway.  My parents, who do not take Remicade, are in their early 80s and they are both battling urinary tract infections (UTIs).  UTIs are frequent with elderly people.  Eventually these kinds of things will happen over time. 

However, my doctors told me that as the immune system weakens with age, so does IBD, and therefore the need to medicate it. So perhaps as we get older our Remicade or other other biological dosages will get reduced as there will be less to suppress. There is that to think about as well.  I do see a lot of people older than me in the Remicade room, and I am 56.

I don't think Remicade compromises the immune system in the same way as AIDS does.  You are still able to defeat the routine stuff that needs to be fought off.  In fact I did get over pneumonia although they delayed my Remicade by 2 weeks so I could be fully past all the symptoms.  It did take some time.

I think the immediate serious risks you are referring to would be an allergic reaction which, as far as I understood, would be evident during the infusion. You'll be watched during that time. I had a negative reaction (serum sickness) to remicade a few weeks after the first infusion. Fever, rash, horrible joint pain. It cleared over a few days with Benedryl and Tylenol. I didn't continue on the drug. I tried Humira later and had a very  severe reaction. Again, a few weeks after the first dose. They are referring to it as 'lupus like syndrome' but also included some  nerve damage which isn't usually part of the lupus like reaction apparently.  The symptoms cleared (in the hospital) within a week or so except the nerve damage which, although has improved, continues 10 months later. 

These reactions are seemingly very very rare though. It seems the vast majority of  people find the biologics to be a godsend. I wish you the very best and would be interested to hear how it goes for you. 

I really appreciate the responses from those of you who took the time on this thread.  I am scheduled for my first infusion tomorrow morning.  I am a little (or maybe a lot) apprehensive about it.  Back in the mid 90s, prior to my surgery, I was on Imuran for about a year.  Then 2-2.5 years ago I tried Humira.  I was told that the Humira wasn't getting into my bloodstream.  I have no doubt that this IV infusion of Remicade will, so I am just anxious about all the potential issues that could arise.  

I had my total colectomy in July of 2000.  So, for the past 19 years I have been living with the symptoms of not having a large colon, having some inflammation in the anus area and sometimes on the pouch.  I have also been diagnosed with Crohn's Disease because they have found inflammation in my small intestine too.  I get by day-to-day not too bad.  Some days are rougher than others.  I think I could hold a full-time job, depending on what it entails.  I am in very good shape for my age (probably in the top percentile) and I look after myself well.  However, I have been taking 360mg of codeine daily to keep my symptoms in check for over 18 years.

I have thought a lot of the fact that "maybe I shouldn't fix what ain't broke." Or at least it functions well enough.  I have mentioned that to some GI specialists.  The response I got was that it's not a good idea to carry on with inflammation in my digestive tract.  That could lead to more severe problems.  Hence, I tried Humira -- but it didn't work.  The reason I never started Remicade sooner is because my family re-located and thought it would be best to wait until we got settled.  Also,  medicare in Canada is a very slow process. That coupled with the fact that I wasn't in a hurry to try another medication is the reason for the 2-year gap since completing my Humira trial.  

I am still apprehensive and not sure if it's the right thing to do or not.  I suppose it's worth a try.  I am not gravely ill by any means.  I just hope it's a smart move.

 

 

 

 

 

 

Here I am, sitting in the treatment room, just told the nurse I need more time to think about it.  She recommended I speak with the doctor at the infusion clinic before proceeding.  Had a long chat with the resident doctor to ease my mind.  Now I am going to proceed.  I'm a little anxious but will simply bite the bullet and give it a try.   

I'm glad to hear you gave this a go! Now you wait and see what happens.  (Sometimes that is harder than sitting for the two hour infusion) Be aware that some people have a reaction after the second infusion. I don't tell you that to scare you, but to let you know so you can be prepared.  Take a designated driver with you in case.  Remember most people don't have any issues with Remicade. It might just make you feel a whole lot better than you thought before.  If you do develop issues, there are still other Biologics out there to try.  

Wishing you the best!

Hi - I've had UC for 30 years and have been on Remicade for 6 years.  Only 1 time I felt a little itchy, and when I told the nurse, she stopped the infusion and replaced the Remicade with a bag of Benedryl.  The solution was that for the next 2 times I had a bag of steroids before the Remicade, but the steroids made me crazy, so I opt out of them.  I feel Remicade saved my life, but I do have a few things to say.

1.  cost - it is a battle to have my insurance approve this.  Remicade is costly, and I've found that by getting the insurance to pre approve a year's worth (6/7 treatments) is much easier than getting a bill from the infusion place when my insurance has decided I don't really need it.

2.  About a year after starting Remicade, I developed enteropathic arthritis.  Basically - I was told that the swelling from the UC "has to go somewhere!" so it goes to my joints.  It's bothersome about week 6 of my 8 week cycle.  I can live with it, and once I get the infusion I feel terrific for 6-7 weeks.  Remicade completely stopped the UC (at least for me) but left me with arthritis symptoms.  Pick my poison, I guess.

3.  It really does knock out your immune system.  I catch everything.

 

I would rather be on Remicade and deal with these issues than be in the hospital with a flare that won't stop.  I think it has saved my life.

Now, I have a question...what's a take down?

 

 

During most J-pouch sequential surgeries (usually 2 or 3 steps) there is a step during which a temporary loop ileostomy is created. This is (sort of) an opening in the side of the ileum that diverts most/all of the stool into a bag attached to the belly, letting the downstream J-pouch heal fully before it’s used. “Takedown” is the relatively simple surgery to close up that opening in the side of the ileum and “take it down” from the abdominal wall, where it was attached.

Once again, thank you for the responses on this topic.  Just a couple of further points to my situation.  I had my Total Colectomy back in July of 2000, almost 19 years ago.  I had it done all in one surgery.  The doctor had initially told me that he could possibly do the surgery to hook up the j-pouch all at once same operation) but there were a couple of things to consider.  First, he told me well in advance that he would not attempt doing the full hookup in a single operation if I were on steroids at the time.  He said it had to do with scarring a d allowing it to heal first.  He said that if I were completely off steroids, during the operation, he would make the decision whether to give me an ileostomy or hook me up to a j-pouch in one shot.  I actually had my surgery scheduled for April.  But after hearing this, and since I was once again in the process of weaning off of prednisone as I had done so many times previously, I told him I wanted to wait at least another couple of months to try and get off the prednisone first.  This way I would have a legitimate shot at a having a single operation to get it all done.  I can tell you that the surgeon was not happy with my postponement and made that clear to me.  I decided to stick with my plan and not get pressured into doing it on anyone else's terms but my own.  Besides, if we are doing this for a long-term improvement,  why the rush?

Wouldn't you prefer 1 operation rather than 2 for the same eventual outcome?  Having said that, my biggest concern was just that -- the outcome.  I asked the question "does either scenario give me a better chance for a better long-term prognosis, whether I have it done in either 1 or 2 operations?"  The answer was not likely.  So, if getting it done in 2 steps would give me a better long-term outlook, I certainly would have been willing.  Since my surgeon didn't endorse that, I decided to keep the single operation option available and leave it in his hands during the operation.  My new scheduled date was July 14, 2000.

I woke up from the surgery just as I had been told to expect -- like I had been hit by a truck.  It was a gruesome and ugly few days.  I vividly recall being in total and complete pain, with the pain getting even worse when I moved even slightly. I know they tried to get me up and walking the next day which was not something my body wanted.  Then I remember laying in the hospital bed puking up all this green vile many times.  It was nasty.  I couldn't talk, cough, sneeze, or laugh without horribly intense pain.  The biggest issue I had in my recovery was that for some reason I was unable to have a bowel movement for 4 or 5 days.  It caused tremendous pain and distress.  I am not sure I recall exactly what the cause was but eventually it got sorted out after tests and more tests.  Then, it was diarrhea around the clock 25+ times a day everyday.  I vividly recall the horrible ongoing pain in my anus from wiping those 25+ times a day.  There were no bidets - hand-held ones or the ones I have now that are connected to the toilet.  It made for absolute agony to go with everything else I dealt with at the time.  My recovery was very long and very slow.  I had no way to control was seemed like non-stop diarrhea around the clock.   I remember a few weeks later talking to a cousin on the phone who had IBD.  She had asked me about the surgery and if I felt it was the right thing to do as she had been considering her own options.  I cursed that surgery again and again and was even angry with myself for going through with it.  As difficult as it was to live with UC, the mess I was in after that surgery was clearly much worse.  The only difference was that I was off prednisone -- or so I thought.  However, they gave me more prednisone after the surgery for a while to help heal me!  

My life was a difficult mess for months.  My weight -- I was in decent shape at about 165-170lbs before the surgery.  After the operation I was down to 143-145 and felt like a skeleton of my old self!  Finally, with the diarrhea frequency not really letting up for about 6 months post-surgery, I asked the doctor if I could try what seemed to have worked at times before my surgery.   Codeine.  So, I started taking Tylenol 4s to help slow down my digestive system and also deal with the constant anus pain.  It helped immediately.   It had helped pre-surgery but was frowned upon due to the risk of a rupture I was told.  Now, that risk seemed to be gone as my colon was removed so the doctor didn't have an issue if it helped me in my miserable situation.  Eventually I has my prescription switched from Tylenol 4s to straight codeine without the Acetophetamine (as it was the Codeine that I needed most).  It was Codeine Sulphate or Phosphate or whatever the drug company labelled it.  It took 360mg daily spread out over 3 doses 120-120-120 to do a decent job of controlling my diarrhea.  I have been doing this since January of 2001!  Only about 4 or 5 months ago when consulting with a new family physician, I switched to slow-release Codeine.  Now, in the morning I take one 150mg slow release tablet with a 30mg regular one.  Then about 12 hours later in the evening I do the same again.  Previously, all those years I had been taking 4 of the regular 30mg tablets first thing in the morning (before breakfast), around 2-3pm, and again before bed.  My body was so used to it.  Most days it seems like not enough and I dealt with the withdrawal symptoms as well as increased diarrhea as I got into the late stages before my next dose.  The idea of the slow release Codeine is to help alleviate those symptoms.  I am not sure it does a whole lot in that regard but it's nicer to take 2 doses per day rather than 3.  I still seem to get the withdrawal and diarrhea symptoms as the Codeine wears off but it maybe a little less intense.  

Fast-forward to 2016.  A GI I was seeing did his tests and observations and diagnosed me with Crohn's.  He said that my small intestine is also inflamed in addition to my rectal area / the cuff of what's left of my large colon.  He highly suggested Humira as all the other stuff never seemed to work (ie) antibiotics, suppositories, and enemas.  I did Humira for 4-5 months with no benefit.  Blood tests showed that a majority of the drug wasn't getting into my bloodstream.  So, he then suggested Remicade.  Since my family and I were relocating, I decided to wait till we got settled.  Now it's the middle of 2019 and after seeing a new Gi in another province, and doing all of the tests once again, Remicade was suggested.   So, here I am on Remicade!

Just to update, my first infusion was June 20.  My next one is 2 weeks after that date.  Not sure what the percentages of Remicade's success or effectiveness rate is after the initial infusion although I would love to hear from others.  To be clear, I have not noticed any benefit as of yet.  I don't think I can report any side effects either.  But so far, I haven't noticed any benefit whatsoever. 

That's my story in a nutshell   Again, I appreciate your responses.  I just wrote this entire post while walking on the treadmill at my local fitness centre!!!

 By the way, if this long post helps anyone in anyway, then I suppose it was worth it.

  

 

 

 

 

 

Hi folks.  Just an update.  Infusion #1 - 2 weeks ago.  Never noticed any side effects or a change in symptoms.  Infusion #2 - today.  The only difference after today's treatment has been basically non-stop trips to the toilet for bladder and  bowel movements.  It seems like today has been at the high end in both.  I would say at least 12 bowel movements since i left the hospital at around noon today.  My bladder also got the better of me as I have made seemingly endless trips as well.

So, I know, be patient.  Next infusion (#3) is on August 2.  Hope to see some benefit prior.

Bloke / David - I wish you all the best.

 

 

What kind of improvements should I expect to see with my Remicade infusions?  This is only a preliminary observation after just under a week since my second infusion.   I have no idea whether or not this is related to the Remicade but I have been experiencing a bit of an unusual feeling of binding that seems different from normal.  My bowel movements have decreased slightly over the past couple of days with this feeling.  Before, it seemed easier to quickly empty my bowels but over the past day or two, it's that binding feeling.  

Just trying to figure out if this is the start of some improvements. 

One more question for those of you who may have experienced it or know... Can Remicade caused sleeplessness?  It seems I have been having a tough time getting a full night's sleep lately.  It may be due to other reasons or stressors  I have been dealing with.  It's no fun waking up at 5am after going to sleep at midnight, 1am or later and feeling tired and lacking sleep all day.  I remember those Prednisone days well from back in the 90s before my surgery.  Benadryl helps but makes me drowsy and it can be hard to break that cycle I find when using it as a sleep aid.  Sometimes when I wake up at 4 or 5am and can't sleep, I will take one or 2 Benadryl.  But it can't take an hour or more for the drowsiness to really kick in.  Them I eventually fall asleep and wake up at 10 or 11 am and feel drowsy.  It ends up eating up a lot of my time.  Then becomes an ongoing cycle again and again.  

Never had a problem with sleeplessness from Remicade.  I always get a Benedryl with my infusion that that knocks me out.  My husband has always averaged about 5 hours of sleep per night - he started taking 1/2 dose of melatonin (per our daughter who is a Registered Dietitian) and is sleeping much better.  I've been on Remicade for 6 years, and didn't have any side effects for a long time.

 

I had sleeping issues before and after Remicade, with no real change in the magnitude of them. I come from a family of insomniacs.

As far as a firming of the bowel movements I haven’t noticed that. I don’t think you will see improvements for around 2-3 months. 

You sound stressed out and looking for cause and effect reactions with Remicade. I would suggest you just relax, chill out and wait. For the sleep issues, NyQuil or the cheaper Walmart equivalent works well, you can also get a prescription for Xanax which should help.

What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis?

The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this.

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