Alternatives to Humira / Remicade Colitis Treatment

Introduction:

Hello. My name is Dan K. and I am 54. I was diagnosed with UC after I had the standard colonoscopy when I turned 50. I am currently struggling to make a decision on a next treatment drug.

My Remicade / Humira Dilema:

Since being diagnosed, I have tried several drug treatments. I have found that I am allergic to most of the standard treatment drugs such as azathioprine and mesalamine (Asacol / Lialda). The azathioprine made me dizzy and sick with flu-like symptoms. Mesalamine brought on the symptoms of colitis even worse than when it first started with me.

Therefore, for almost four years, I have been on an entocort / prednisone treatment. Generally, I am on the entocort as it is slightly better than the prednisone per my doctor. However, as I try to taper off on the dosage from 9 mg to 3 mg, I usually end up having a flare up and then have to go back to the 9 mg plus 20 mg of prednisone to calm the flare-up. I then gradually reduce the prednisone to zero and try to stay on the entocort.

My gastrointestinal doctor is really pushing me to either go to humira or remicade, as he says I can’t stay on the steriod treatment much longer. I am really struggling with this decision when I read this site and other information about these drugs and their side effects. I don’t see or read about any other options from what I am currently doing versus going to humira or remicade.

Does anyone know of any other options that I could seek out? Humira and remicade options make me very nervous.

I don’t currently have a lot of the steriod side effects of puffiness / weight gain, etc.. I am physically active with running / weight lifting / etc.. I have had two bone scans as well and I don’t seem to have any bone density issues with the steriod treatment. I regularily take calcium supplements as well as other vitamins to be sure I have enough supplements.

Thank you for any help and assistance!

Dan

submitted in the colitis venting area

 

Alternative Treatment Pages:

Using Diet and Kinesiology To treat Colitis Successfully

Vitamin E Enemas as A UC Treatment

A Bunch of other Alternative Medicine Ideas/Posts for Colitis

11 Responses to Alternatives to Humira / Remicade Colitis Treatment

  1. Lara
    Lara December 28, 2011 at 9:17 am #

    I have no experience Humira. I’m currently on Remicade. I can tell you that this has been absolutely
    life-changing for me. I haven’t had a flare since starting it (thank God!). The only things I’ve really noticed as far as side effects are: it makes me really cold & I usually require a lot more sleep before & after I get my infusion.

    Make sure you have good insurance because it’s really expensive (up to $20,000 per year). It seems most insurances file it under Major-Medical. It is a long-term treatment, so be ready for that. My GI doctor told me that I’ll be on it for at least 1 year.

    I know of no alternatives to these treatments. But I swear that Remicade has literally saved my life.

  2. Trina
    Trina December 28, 2011 at 5:10 pm #

    The long term effect of the Pred is worse than any of the other drugs. I’ve been on 2 rounds of Pred this year for 1 month at at time. And my dr won’t put me on it again. It’s really bad for your bones. Have you tried to alter your diet? I highly reccomend probiotics! I’m currently on Asacol. And if I go into another flare me doc wants to treat me with 6mp. And I refuse to go that route. You may want to change your diet as well. Low carb and gluten free seem to really help for me. And also I would stay away from the dairy products and fried foods. As well as high fiber foods.

  3. Garry December 28, 2011 at 8:25 pm #

    I was in your shoes a few years back. Tried Remicade for about a year. Saw some improvement at first, but wasn’t satisfied with the results or keen about the idea of staying on the drug indefinitely. I was 47, had suffered with uc for 4+ years and the only alternative the docs had to offer was surgical removal. In 2009, i tried radical dietary change and a heathy dose of rest and relaxation per David Klein’s book, “self healing chrohns and colitis.”. That worked much better than any drug my GI had to offer. I reintroduced animal proteins in my diet and ultimately moved to a diet very similar to the scd. I also started seeing an applied kinesiologist and following supplement protocols as she recommends.
    While I have had a couple of flares since, my symptoms are much improved and controllable thru getting strict about diet, eliminating caffeine and alcohol, and reducing bad stress. This disease is so idiosyncratic; and there are so many confounding factors that may be influencing the course of the disease. But I firmly believe I am healthier amd happier than I as when I was deep into the medical interventions. I went two years without the pharmaceutical meds and only recent went back on Asacol, reluctantly, after my colonoscopy, taken during a flare, showed active chronic uc involving my entire colon. A couple weeks later, the flare was over and normal blood-free stools returned. Who knows whether it was the Asacol or the strict low carb, no sugar diet that did the trick. But I will stick with the Asacol for now. I have no plans to go back on the stronger meds. And I intend to keep my colon until my GI sez the risk of colon cancer is too great.

  4. The Bird December 29, 2011 at 5:19 am #

    Long-term use of prednisone is linked to osteoporosis, is dangerous to your eyes and overall health. Your doctor is right to try to get you off Prednison, as it has been linked to many health problems and earlier death. I do not mean to scare you at all but this is coming straight out of my doctor’s mouth. Have you looked into 6MP? I know it’s not ideal to be on these medications but the dangers and side-effects of Prednisone are much worse than 6MP or the other biologicals that you mentioned.

    Lastly, have you tried the SCD diet? :) I have and had some improvement, mainly the night sweats are gone and fewer trips to the bathroom but it does not keep me from having flare-ups.

    Good luck!

    I believe one day, with God’s help, I’ll find a way. Hang in there!

  5. Dan K December 29, 2011 at 1:42 pm #

    Thank you everyone for your replies.

    From reading your feedback and other information on this site as well as others, I decided to try the SCD diet and the vitamin E enemas as a first step to get off of entocort & prednisone before I go to Remicade, Humira, or 6MP.

    I do have periods of “near” remission when I’ve gotten to 3mg of entocort but then they only last a few weeks before I seem to flare up.

    I’m hopeful the SCD diet and vitamin E will work for me and I want to at least try it before trying the other drugs.

    Again, many thanks!

    Dan K

  6. Danielle March 7, 2012 at 10:49 am #

    I am 27 years old and was diagnosed with uc when I was 19. I played the same medication game. I started on remicade 4 years ago and have had one small stress induced flare up since. I strongly recommend getting off the steroid ASAP! I was on prednisone for 1 year and I have done major damage to my spine and joints. You don’t feel it while you are on the medication its when you come off. It can also cause uc/crohns arthritis without it showing up on xrays. The arthritis is almost as bad as the colitis. The tired feeling the week of and after your dose of remicade goes away after about a year of being on it. I went from being told that I wouldn’t even have children, work or go to college to being a nurse, a mother of a wonderful 18 month old, and the wife of a wonderful husband that stood by my side through the many hospital stays. My advise as a nurse with alternative treatments is to be careful, they can have some really BAD side effects and cause liver problems. I have seen it for myself. But Remicade saved my life. It is expensive, I have wonderful insurance and benefits for being a hospital employee which is where I get the treatment but I would definately talk to your insurance company to find out the cheapest version. I am currently wanting to change from Remicade to Humira so I can do my treatment at home. There is good and bad with everything, you just have to find out what is right for you. But I live a normal life as far as uc goes, mine is in remission and has been since my first treatment of Remicade. I was able to get off steroids in a week after the first one and have been able to eat what I want! No more bathroom stops every few minutes and aweful stomach cramps that make you break out into a cold sweat. It is scary, I was terrified when I started. A good support system is necessary and have someone go with you your first time. The steroids will hurt your body much more in the long run if they haven’t already done the damage.

    • Tammy January 17, 2013 at 2:31 pm #

      Danielle—I would love to hear an update from you. I have been doing Remicade for 7 years and just yesterday, my GI suggested I switch to Humira. Like you I feel Remicade was a life savor for me. I have not had a single flare since I started it, and at the time it was a last ditch effort for me before removing my colon. I’m really torn as to what to do as I’m afraid of “rocking the boat” and creating issues where I haven’t had them for so long. On the flip side, I would love not having to visit the hospital for that infusion that always eats up 4 hours that day. I have very good insurance that pays all but about $25.00-$35.00 of each infusion so money doesn’t really factor in for me. Actually, giving myself the shot would be a few dollars more expensive, but not enough to be a factor in the decision. Thanks in advance for any input you can give me!

      • Anthony March 14, 2013 at 1:42 pm #

        iam on humira shots now ….my wife is an RN..she gives me the shots ….you feel the med enter into your leg and for me it is very intense –you feel the med going in ……i know i could never give this shot myself because i have to really hold on to the couch or i would hit the finnnnn ceiling …it helped me a little but i still have symptoms when i do eat ….

  7. Laura January 6, 2013 at 11:16 pm #

    I know this is an older post, but I recently started remicade. I haven’t noticed any change of my Crohn’s (I know this is a UC page) I’ve had fatugue and nausea daily since the first infusion and haven’t even felt like doing my work outs to something simple as cooking dinner. I know it is my first infusion, and I hope it fades. The side effects scare the crap out of me, but the doc I trust, ensures me the benefits are higher than the risks. As far as prednisone goes, I will NEVER take it again! I was on 40 mg for months and I gained weight (Almost 40 lbs of just prednisone weight) and had some crazy joint pain. I didn’t feel much better while on it. I had weird hair growing on my face, the “moon face” and the buffalo hump. I was over it. I hope the remicade works for me (for at least a while, as does any med I’ve ever taken) and Humira is the next step for me. Good luck to you all and I am glad there are so many like me! I am also going to look into the SCD! I have to have WEEKLY B12 injections, and maybe I can slow that by helping out with this diet.

  8. Jay February 13, 2013 at 7:47 pm #

    I Have been dealing with UC for to long.. I just graduated and am working harder then ever with work and school. I want to be successful, I just was lucky enough to get a job out of 400 applicants. This is a job that will really help me get some where. I just now thought about my remicaide appointments that are every eight weeks.. I don’t know how my new boss will like that or if he will still want me for the job. Further more, I don’t know how this will effect future jobs! I guess what I am getting at is there anyone that has had remicaide work for them, but could not go to the appointment times that where offered? If so what treatment worked in its stead????

    • Angela February 14, 2013 at 6:25 am #

      Hi Jay,

      Don’t worry! First off your boss (or the person hiring you) is not legally allowed to ask you about your health and it cannot affect their decision to hire you (otherwise you can file discrimination charges). So my advice…don’t tell them until after you get the job! Secondly, UC patients are protected under the ADA Act (Americans with Disabilities Act) which means that your employer has to provide reasonable time off for doctors appointments, hospitalizations, etc. So you’ll be fine, don’t worry!

      I’ve been on remicade for 8 years (through high school, undergrad, grad school (currently) and many jobs and internships in between) and have never had a problem. I just tell them that I need the day off for doctors appointments and they don’t ask questions, they say ok and I bring them a “work excuse” from my doctor or infusion clinic. I’m at a 5 week interval and sometimes I couldn’t make an appointment due to a big project or exam etc. I just move it to an earlier day in the week or a week earlier (don’t do later) and then go 5 weeks from that date.

      Don’t let this stress you, because you’ll only make your UC worse. Everything will work out!

      Angela

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No matter what, colitis flares don't last forever, don't forget it:)