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Remicade: A Short Term Fix or a Lifetime Crutch


My name is Chris: I am a 52 year old male, diagnosed with UC at age 29. I am in financial industry, live 20 miles south of Boston, married 26 years with 3 children, ages 17, 15 and 11. 5′ 9″, 180 lbs.

Some more about me:

My kids take up the bulk of my time outside of work. When they are not playing sports, we spend a lot of family time together. I coached lacrosse for 10 years, played in an over 40 league for 5 years and now run our town program. Other interested include skiing, boating, sufing and I am a closet motocross fan, after racing in my youth.. I threaten my wife I will buy a dirt bike soon. These outdoor sports are usually enjoyed with my family. With all this, I love most spending time with my wife and I do love to read, when I have some time, which you can see is rare! I also love progressive rock and most quality music from the 70s…


My current “state” is bleeding and light colored liquid, expelled throughout the day and night at intervals of every two hours, on average. When I make a movement, it is a 1-3 hour ordeal. My entire body constricts to force the solid waste out of my body, leaving me torn to shreads, exhausted and mentally drained. Cramps come on very quickly, which indicate I need to get going to the closest bathroom. After the worst bouts, it seems as if my entire lower digestive tract is hot and swollen. Lastly, about 8 weeks ago I have experienced migranes. Mostly the visual stuff, but they seem to come on and I would get them for a few days, then they went away again. I am getting them again now. Also, I was beginning to get pain in my ankles and hips.

Remicade: Short Term Fix or Lifetime Crutch

I came down with my current flair about one year ago. Who knows why it came. This is my 4th, maybe 5th flair-up in the 20 years of having the disease and it has been the worst. Stress? Well, my job did fall apart a couple of years ago and that may have done it. Diet? Well, I was not an SCD type, but I did eat whole foods primarily (not the grocery chain.) I drank beer/ wine on occasion, don’t smoke, don’t do drugs… a pretty average guy… But I have been trying to earn a living while dealing with this and I am at my whits end.

My dilemma is a few weeks ago my doctor stated I was becoming “Prednizone Dependent.” I shiver at the thought of the drug, so this was a shocker. I should note that around the 2012 Thanksgiving, I was at 15 Mg.s and improving. My doctor said to begin to taper in early January but symptoms quickly escalated. Also, in the late fall I went onto the SCD plan. I was pretty good at it, drank a few glasses of wine a week, but was pretty good, even over the holidays…

In December 2012 I saw some of the moon face symptoms, so the direction from my doctor to begin tapering off the drug was a wish come true. I was terrified of Prednizone… Still am. When I first came down with UC at age 30, my doctor put me onto 60 mg.s of it? I was pretty bad, since I didn’t see a doctor for a year after seeing symptoms. But at that time, my cheeks blew up, I got acne on my face and chest and still have scars from it. I did finally go into remission and didn’t see symptoms again until I was about 35-36. These flairs were always handled without Prednizone.

So with the message from my doctor in January was that I was becoming Prednisone dependent, and he said the next step was Remicade infusions… Sounded like Chemo therapy…

Problem was I lost my job in January (after being with the firm for 18 months… yes finance can be cruel like all jobs these days) so the idea of paying $5,000 per infusion, with healthcare that cound go away if I couldn’t find work… You get the picture. This was a ball of stress and a problem I couldn’t really grasp. The mind does a great job of blocking out the gory details of life, to preserve sanity!

Thanks to iHaveUC and the internet I was able to learn a lot about Remicade. It made me a bit more accepting of the idea but also quite upset that my doctor really didn’t explain much. With no job and a sense that I wanted to so something about things, on my terms, I decided to taper off Prednisone, go back onto the SCD diet and then see how things looked.

Well, I have been off Prednisone for four days after reducing from 15 mgs in increments of 2.5 mgs to 5 mgs over the past 6 weeks.

Do I have a question? Before I go there, let me say that when I first read your story and then the newsletter, at time I cried. Because it was moving to know their wereothers like me. I wanted to hug someone. My wife is great. Being out of work and sick, can really kill a relationship, but she really doesn’t understand. So many of my questions have been answered. Wish I could hug you all for that!

My question is this:

Do I manage my symptoms with diet, etc. and stay away from the Big P and Remicade? Or do I give Remicade a go? I haven’t read any examples of UCers going on Remicade, then going off it for good. That is my fear and one my doctor didn’t discuss. Can Remicade be used to eradicate this current flair, or it required to be a long term treatment?


Up to two months ago, I was on 6 tabs of Asacol HD, alternated between Canasa and Hydrocortizone enemas in a suspension of liquid and 15 mgs of Prednizone. I started SCD last fall, with results that went away with reduced Prednizone and I also started VSL#3 probiotic, which I really don’t see helping much.

written by CA

submitted in the colitis venting area

25 thoughts on “Remicade: A Short Term Fix or a Lifetime Crutch”

  1. Hi. Im also considering Remicade and have the exact same symptoms as you. I pray you find the answers you are looking for and that you can get back to being the husband and father you want to be. I have a friend who has been getting Remicade treatments for the past 6 years and swears it’s changed his life. He’s like a “normal” person again.
    Im out of work because of the severity of my symptoms so Im getting medicare soon…when I do Ill get remicade. In the meantime I feel like my diet is making me feel so much better the past week or 2. Ive been having a smoothie 1st thing in the morning to gently wake up my digestive system. Mango, banana, carrot, 1 tbsp coconut oil and a little spinach. For the rest of the day I keep my meals light, portion wise. I cant eat a bulky meal like I use to. It makes the next morning hell for me. Try smoothies and try your hardest not to get stressed out. I know stress is what brought on my symptoms. Good luck

  2. Hey,

    I’ve been on Remicade for close to 6 months and doing well. I’ve found that probiotics really helped me (Align)before I started the Remicade, you may want to try a different brand. I take methotrexate along with my Remicade so I don’t build antibodies to it. If you do decide on Remicade, ask your dr about pairing it with something so you won’t build antibodies which will cause it to stop working. The decision was easy for me, I was prednisone dependent like you and was faced with Remicade or surgery. It sounds like you haven’t tried all the drug options available from what you posted. Have you tried Entocort, or Imuran, Lialada, sulfazamine? There are quite a few drugs before jumping to biologics…but I’m no dr and perhaps your dr doesn’t think they’ll work??? You have a good question about how long you’d have to be on Remicade and all I can say is its different for everyone. Some people could be on it for years while others fail it right away. I wish you good luck with whatever you decide.

    Melanie :)

    1. I’ve never heard of metho being used to prevent antibodies for remicade, I’ve only heard of it as an aid to remicade to send you into remission and then using just remicade as maintenance (been on remicade 9 years, 4 of them with methotrexate at the beginning). Agreed with my doctor to stop it because combining both of these drugs increases your risks for lymphoma (still pretty rare risk but it does increase it a little). If you can deal with just remicade you should try weening off the metho sometime in the future (you don’t want to rush it though). Methotrexate is a MUCH harsher drug in my opinion than remicade (they use it for chemo!) and its an pregnancy category X because it grossly interferes with folic acid. If you can’t go off because the combo is working great for you, definitely make sure your doctor is giving you folic acid supplements. :)

  3. Prednisone for me has always been a last resort kind of drug, hate the side effects and refuse to go back on. I am on remicade and it seems tl have curbed things for a while. It does help some people and others not so much. Each of us is different so I can’t say for sure it will work for you. While it may help, it is a bit of a crutch. All biologics are, they are not cures. I know it sounds like a downer but there is no cure, but only you can tell what your body needs. A combination of the right meds and diet may put you in the right place but it all depends on your body. Not sure I was all that helpful but just wanted to chime in.

  4. Chris,

    Sounds like you and I have several things in common. I too raced motocross in the early seventies … Roger DeCoster was my hero. I’m 56 years old and have had UC since 1991. I’ve tried just about everything to treat this monster. According to my GI Doc, Remicade should be a last resort next to surgery ( maybe not for everyone ). Apparently Remicade can have side effects that he believes are more severe than other medications used for UC. Some people may disagree … but I was in remission for SEVEN GREAT YEARS when I first used 6MP ( 6-Mercaptopurine also known as Purinethol ). I did not have any side effects from this drug. I’m a firm believer that once you get into remission you should use natural methods to get off the pharmaceuticals, if possible. As you have probably read on this site some people have found relief using … L-glutamine, olive oil, probiotics, SCD diet, evening primrose oil, coconut oil, fish oil high in omega 3 … to name a few.

    Just an opinion. GOOD LUCK in whatever you decide !

  5. Hi CA!

    We sound very similar! I became prednisone dependent because I was on it for 3 years straight, while I give it its credits that it got my UC into a good state, the side effects sucked (I was diagnosed at 13) and I couldn’t get off it without replasping. They also tried 6-mp (had a toxic blood reaction) and methotrexate (which didn’t work on its own). So two years in went on remicade…been on it for 9 years (and received it in 3 diff. countries)! It is my godsend. Got off pred after the first year, and off the methotrexate 4 years later. You don’t hear of cases of people stopping remicade because that can cause complications. As already mentioned, people can develop antibodies to it, reducing its efficacy. Starting and stopping remicade can increase your risk of developing the antibodies which is why most docs don’t recommend doing that. Also you don’t hear of many stories because remicade is sooo new.

    The big thing to remember is that no matter if or what drug you’re on you should still try to manage UC with diet because it will still help the drugs work better/you won’t need as much! Through exercise, a really healthy diet (I don’t do SCD), I dropped from 5 weeks to 8 week intervals.

    Anyways, you shouldn’t be worried about the infusions, I actually find them peaceful because they’re a dedicated 3 hours of relaxing but it is weird though to jump from prednisone to remicade. I’d possibly look into a second opinion and see what other options you have first.

    Good luck!

  6. Hi Chris,

    I’m sorry you’re struggling. I am, too, after four yrs of remission with NO meds. I can relate to your bathroom episodes. Mine do not last as long as yours, but I tend to have 2 episodes in the morning while getting ready for work. I get up 2 hours early, because I must lay down & recover after each episode. As I drive to work in the morning, I’m already drained. Makes for a long day, an exhausting week. (This is something only another uc-er can understand.) But, I do recognize some gradual improvement since I’ve started taking North Coast Fermented L-Glutamine. I also take VSL & wondered whether it was making a difference. When I cut back on them, I found out they are, indeed, helping me. I’ve also started drinking aloe vera juice. I have some energy back & fewer trips to the bathroom. I think there are many weapons for your arsenal here at this site.

    I have three kids, also. Ages 19, 17, 15 (& four step-children!). Hang in there. :)


  7. Hi Chris,

    I am one of those log time UCers who does not believe that medical drugs are the way to treat and manage our condition. Not even in the slightest way…

    I am totally med free, now, and in remission, on only a GOOD probiotic (Ultimate Flora Critical Care by Renew Life) and fermented L-glutamine powder. (I also take vitamin D and a natural anti inflammatory called astaxanthin just for good measure). I will take these things every day, for the rest of my life! They have literally ‘saved’ me from those dangerous drugs (like pred and remicade) and have given me a normal life back. It did not happen over night, but I kept taking them, and now, a year later, feel 100% for the first time in 14 years!!

    I was on asacol for 14 years straight, and not only didn’t it help the UC much, but at the end of taking it, it actually began working against me. Making my UC symptoms even worse! That’s right…worse. The trouble with the UC medication merry-go-round, as I call it, is that ALL of them eventually stop working. Remicade too. Not to mention the short and LONG term side effects. You could wind up with other health problems worse that UC itself. NOT WORTH IT!!


    1. This is very inspirational I am going to buy all the things u mentioned!

      I’m 24. Taking remicade. It sucks!

      I will try ur method!

  8. Hi Chris,
    For the last three months I was in a pretty bad flare myself. In fact, the Dr at Mayo Clinic said my colon was the worse he had ever seen. Yes, it freaked me out when he told me that because this guy was the head of the GI department and who knows how many he had seen. So he had me skip all the “intro” drugs and I went straight to remicade. They say that remicade only works around 60% of the time and eventually stops working but even with those stats I went ahead with it.

    The first infusion lasted about three hours and wasn’t that bad except I had to drag the IV machine to the restroom 3 times to let out some mucus and blood. Quite embarrassing. Two days later, the only difference I noticed was that my constant left side cramp seemed to fade some. However, all my other symptoms remained the same.. night fever, 20+ BBM, cramps etc.

    Two weeks later I had a second infusion. No change other than my bowel movements probably decreased to 15x day? When I told my dr this they decided to add 40mg prednizone to the mix to help speed up the recovery because we believed the remicade was helping some right? They said pred works 80% of the time but one should never be on it longterm. They said the point of remicade was to get people off Pred.

    So after about two days on 40mg pred and second infusion I actually began bleeding more. I am talking 15+ where the toilet bowl was completely red. Needless to say, this worried me to the point where I went to the ER to have my RBC checked. It was borderline low (around 9.5) but not enough for transfusion so they told me. However, they still admitted me for 3 days to try and slow down the bleeding. It didn’t work. During this time they gave me IV pred of 40 mg. I was still bleeding but RBC never went below 9.5. I was “stable”. I told the DR’s I could bleed at home just the same so they let me go home.

    About 1 1/2 later I had my 3 third infusion while still taking the 40mg of pred. However, two days before the third infusion I began to watch my diet and cut out wheat and most processed foods. The bleeding slowed down. Was that the diet or the remicade??

    So here I am about 3 weeks later completely tapered off pred (which I don’t think did a thing for me) and on Remicade but slowly improving. I am still watching my diet and have added juicing to the mix. My bowel movements are down to around 8-10 a day with some semiformed stools. I seem to be heading on the right direction although slowly.

    My point of this comment is that I have no idea what is actually working for me. The remicade has had zero side effects for me so it’s not a big deal for me (other than the price and fear of cancer) so I will continue it for at least two more infusions. My other point is that I really do believe (like Adam always says) that it will get better even though I didn’t believe it possible at the time.

    Anyways, sorry for the long reply but please know that there are a lot of people in your corner!!! We are all in this together.


  9. I’m a 38yr old mother of 3. Diagnosed when I was 23.I have pretty much had mild symptoms since I was diagnosed. I have tried Most of the entry level drugs. I often use prednisone for flare ups,which happen every year or so. I had a very bad flare several months ago that would not pass. The Dr. Finally convinced me to try Remicade. The first infusion immediately and dramatically improved my symptoms. Two weeks later had a 4 week dose. Improved symptoms for two weeks and then symptoms gradually returned. I couldn’t wait for my 3rd dose because I was so sick again. However, the 3rd dose actually made me feel worse. I was put back on Prednisone to get my symptoms under control. Meanwhile, I was tested for food allergies by another Dr. Was told I’m allergic to several foods. I cut out those foods immediately. I eat very basic and all natural. After 4 weeks on my diet, I’m off the Prednisone and only having mild symptoms. I cannot wait until May 15th for the Remicade to get out of my system!!!!! I have a SEVERE rash on my back and arms. I can’t wear short selves. I suffered muscle fatigue and headaches. Dermatologist has tried several meds on my back and arms and nothing works. I look like a total freak show! Let me tell you,that does wonders for your state of mind. I can say I gave Remicade a try, but it did not work for me! Be very cautious when putting this or any drug into your body. Make sure you exhaust all options first!! I just have to wait for it to wear off to get my life back. I wish you the best of luck.

  10. i tried remicade and it worked really well in the beginning. i think that’s the problem though- your body builds up antibodies pretty quickly to these drugs. after 5 infusions, it was like i wasn’t even getting the infusions anymore. just no difference. i would’ve stayed on it if it kept me in remission.

    the infusion was pretty painless and my main side effects were headaches and frozen joints. it was a small price to pay though because my UC was quiet during the time it was working.

  11. Dear CA,

    I am 41, female, diagnosed at age 24. I have never had a remission on my own. I suffered through taking a roomful of asacol that did nothing, years of prednisone, etc. In 1998 my doctor gave me remicade with methotrexate. I got better, but the metho made me vomit everytime so I stopped that. It doesn’t work for everyone but I’ve been on it for over 14 years and it has allowed me to live a (mostly) normal life. I don’t look at it as a crutch; I see it as maintenance. Look into remistart. They will help those who can’t afford it. As for the antibodies, I have had two pregnancies when I stopped remicade txs until I delivered and started treatments again with no problems. Of course, everyone is different. But my kids have been blessed with a mama that is functional because remicade worked for me. Cheers and good luck,

  12. Hello Chris, I am releated to you in many ways. to write a story short.
    I took prednasone: It was horrible, the side effects started to destroy my body so I stopped.
    I had two infusions of Remicade. I did not notice any changes.Again the side effects, I was tired all the time, I could not breat and many more. I stopped.
    I applied cortizone enemas and they make me bleed more. Horrible!
    All these medications did not work for me..:(
    In these moment I just take Asacol 3 or 4 pills 800 mg each and 125 mg of IMURAN this every night. I do not take pills during the day because they send me to the bathroom(just at night). I do not have time for that..
    Plus I am taking this wonderful Homeopatic medication: the name is PODOHYLLUM Compositum from HEEL Labs(you can buy it on the web,I buy it in Amazon. This I take 15 to 20 droops at night and as soon I woke up in the morning in a big glass of water I took another 20 droops. Do this before you brush your teeth or your morning routine. This has been helping me a lot.(you can read about it)No side effects.
    As I mentioned I am starting the diet again together with continued with these medications. My family is wonderful and they always with me but I inderstand how you feel alone, feeling you are the only one with these horrible symptoms and the true is we are sooooo many that we fell the same way… The only thing left is keep trying to get better and we will one day.. I hope you fell better and you undestand my English. Good Luck!
    Marie :)

  13. Hi Chris,

    I was diagnosed in 2007, but in 2010 I started a flare I could not stop, went to hospital twice, blood transfusions…nothing was helping, and I was loosing weight , about 25 kg..I could hardly walk,no energy ..
    So I started Remicade, (Italian national health passes it totally) with all the fear you can imagine …well infusion #3 was the turn point..and in the mean time I had started a vegan diet, no meat, big no to cheese and milk products, VSL#3 twice a day, and even more if the pain was big..
    Side effects of Remicade for me were extremely tiredness and memory loss, which really scared me..I forgot my iPad on the bus…ahahah so in September 2011 I got my last infusion, against my GI’s opinion. That means I was on Remicade for 1 year exactly.
    After that I am medication free, still need to stick on diet otherwise I immediately see mucus coming back. But I feel fine now!!

    So I really hope you can find your personal way out, this site is so inspiring!!!
    Never stop researching and reading about UC

    Best of luck,

    Ciao ciao


  14. I’ve been on Remi for a year now and it’s been a life saver. I live 30 miles north of Boston. I go to Boston for remi treatment and for my GI. They have the Crohn’s and Colitis Center at MGH. I love this place cause they only see patients with our issues. You might want to go for a consult and get a second opinion. There are lots of med options and they specialize in difficult to manage cases. Hope this helps!

    1. Hi P,

      I live in the Boston area as well. And my doc is advising me to go on Remicade starting in August after I finish hepatitis vaccination process. i am also on SCD; l glutamine; D3, Lialda and Prednisone as well as probiotics so I am exploring all the options to see if I can taper off Prednisone with all the other things I am doing without going into a flare up again.

      Let me know if you are willing to talk to me privately and how I can reach you. Would love to get more info about your Remi experience.


    2. Hi Chris:

      Your experience with UC sounds much like mine so I can relate very well. I`m a 60 year old male and have always had a busy active lifestyle such as yours. I was diagnosed with UC 7 years ago and have had many flares and problems with this disease over the years. I commend and envy people who have been able to control this disease without drugs and are able to use more natural methods, treatments and products. I tried controlling my UC without drugs and using natural means and diets and I just haven`t been that fortunate. I was also not the SCD diet type and it didn`t work for me either. My GI doctor and I have tried all the drugs you`ve been on and several others. After the non-steroid drugs didn`t control the UC, my doctor suggested starting Remicade infusions. I did have some side effects from the Remicade, sore joints, nausea, headaches, acne. After one infusion I had a terrible reaction, all my joints swelled up and I could hardly get out of bed get dressed and walk. I went to my doctor and he gave me an injection of Benadryl plus an anti-inflammatory. I was back to normal in a few days. The Remicade did seem to help and my UC improved after about 4 or 5 infusions. Then it just stopped working for me and my doctor advised me to stop the infusions. After stopping the Remicade, I started on Humira and I give myself a 40mg injection every week. I`ve done approximately 30 injections so far and it appears to be helping. I`ve been symptom free for over 6 months and haven`t had a flare since October 2012. I`ve been on and off Prednisone for years and now I`m only taking 5mg per day and hope to be off the Prednisone soon. I don`t like taking Prednisone either but it has always helped control the flares. I`ve had the moon face also when I was on higher doses of Prednisone. My doctor has also determined that I am steroid dependent. I feel very well these days and I never thought I`d ever get to this point. It seems that the Humira is working for me so far and I feel as close to remission as I`ve ever felt in 7 years. I`m also much better at controlling stress in my life which I feel has contributed to this disease. I eat a normal diet and still have an occasional beer or two, or a glass of wine, and I love 60`s and 70`s rock and roll! I know some people have had a good experience with Remicade and it can become a maintenance drug. I was willing to try anything at that point but it just didn`t work for me. If you do decide to start the Remicade infusions I would not spend $5,000. per infusion out of your own pocket. It is cost prohibitive, it may not work for you and it`s just not worth it. Janssen Biotech Inc. has an assistance program called Remistart that is renewable every year and pays the majority of the cost of Remicade. With the Remistart program the patient cost is approximately $200. per infusion and covers 8 infusions per year. I wish you the best whatever you decide to do. I know what you`re going through and like me you`d probably want to try anything. This website has helped me very much over the years. Don`t give up hope getting your UC under control and feeling good again soon.


    3. Hi,

      Here is an update on my remicade treatment. I had my fourth infusion of remicade on May 2nd. For the first 4 days my symptoms seemed to improve. About after a week I started to go downhill. I have more bloody stools and D. 15+ a day. This happened after my second infusion as well. It’s as though the remicade wears off after a week and my colon becomes more upset. I dunno. Has anyone experienced this as well?


    4. I was on Remicade for a year and a half, and it did work quite well for me. only had a flare up when i had to postpone an infusion due to insurance reasons, and it took a little while for me to get back on track. I do not have a link, but a study you can find on google or something says there are no current long term risks to taking Remicade (aside from the blackbox warning)i think the study was done in 2009 i am not sure. anyway i hope this helps, and remicade worked well for me if that is what you choose to do. i only got off to try natural ways

    5. Hey there! So sorry to hear what you’re going through. I suffered with UC for many years. No meds ever worked on me and eventually I had a total colectomy.
      For a short while everything seemed to be fine until I started having symptoms again, which led to more surgeries. At the end of last year I was re-diagnosed with Crohn’s disease. I’ve been taking Imuran and Entocort to help. Unfortunately, these meds have become no use for me because I have now developed fistulizing Crohn’s disease. I’ve had 2 surgeries within 2 months, 2nd one being a week ago. I have made the decision today (after lots of research betwn Infliximab, adalimumab, and cimzia) to go with Infliximab (Remicade). With a current seton in place, this med has a higher chance of closing all my fistulas along with other issues.
      My question to you is why your doctor would choose to go with an TNF-Antagonist med when there are LOTS of other options for you. If I had UC and never had all the issues I did, I would greatly explore before choosing such a “last resort” drug. Once you start this med you cannot stop it. But if for some reason you have to stop it, you can never go back on it. I’ve done my research and I would suggest you do the same. I truly think there has to be a better option for you. That’s just my opinion. Be well.

    6. Hi there!

      Well since this post is more than a yr old, I hope you are no longer dealing with any symptoms and have found a solution. Since I just recently started Remicade, I decided to look into this section to see if there was any help I can offer.

      Ive had UC for 7 years and have tried EVERYTHING. After years of being on Lialda and flaring, my dr said that my body was use to the drug and its affects so it wasnt working for me anymore. As a last resort we switched to Remicade. Ive had 4 treatments and let me just say that THANK GOD this drug exists! I have never felt better!

      Im all for going the natural way and trying to fix the problem with diet and whatnot, but at some point you have to explore all options if diet isnt working for you.

      Remicade has given me the confidence to live without the fear of sudden symptoms. I havent experienced any side effects and I have felt 100% since day 1 of treatment. I would highly recommend it to anyone who has tried it all and is at their witts ends.

      It can be very expensive but there are programs out there that can help. There is a program called Remistart that reimburses up to $150 per treatment. So if you can get your hands on some medical insurance (with obamacare, I think that should be easier now, no? I dont know much about it, so I could be talking nonsense) and you could end up only paying $50 every treatment. For me that means $50 every 8 wks!

      Hopefully this will help but even more so I hope that you miraculously rid yourself of this horrible disease. =)

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