A Possible Alternative To Prednisone

Intro:

I have had UC for 10 years, diagnosed in my first trimester of pregnancy. I’ve had successes and failures with many 5-ASA’s and biologics as well as some decent remission times.

Some more about Alice B:

I’m a former pharma rep who did a 180 and now work on documentary films.

Prednisone Alternative Possibilities:

I wanted to share some medication info with anyone who is having prednisone, Remicade and or Asocol HD failures.

I’m having a bit of success after failures on Prednisone, Remicade, Asacol HD, and 6mp. I think they call it steroid refractory UC.

This past week of trying new meds was my last ditch effort before surgery. Just to clarify, there was a point when Remicade did the job well and prednisone would’ve knicked some symptoms but I took a two year break from Remicade. A step which several GI doc’s are opposed to.

Anyhow,
My doc was openly out of ideas for treating my idiopathic responses to meds. I’d been tested for cdiff (negative).

I used to be in the pharma industry and brought up the possibility of my liver being in the way of metabolizing the prednisone and others.

He put me on a different steroid- Uceris ( my insurance didn’t cover it so it was replaced with Budesonide 3mg/24 hours at 3 times per day, also Cipro 2x per day and Metronidazol 3x per day.

More importantly he told me to stay away from the Asacol HD.
He has been seeing patients seemingly becoming “immune” to it.

Bottom line is after a week and a half my severity and symptoms are much better.

UC’ers should remind their docs about Ucerus aka Budesonide when prednisone fails because it doesn’t activate until it reaches the illeum and skips the liver enzyme. Another great bonus is it doesn’t come with many of the same side effects.

There are several studies I have found online about refractory ulcerative colitis based in the UK. I live in the US and not much has been done here on the subject of alternative steroids.

I hope this can be of some help to my fellow prednisone-failing UC’ers.

written by Alice B

submitted in the colitis venting area




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21 Responses to A Possible Alternative To Prednisone

  1. Adam
    Adam April 12, 2014 at 5:51 pm #

    Hey Alice,

    thx for sharing, and since so so many UC’ers get on a prednisone round so often, this might be pretty useful to a bunch of people to at least thing about.

    and for those of you who are not finding relief from those nastly little pred pills even though they worked in the past, maybe your docs might be interested or need some info on this stuff.

    good to know, and thanks for your thoughts Alice:)

  2. Cheyenne April 12, 2014 at 6:33 pm #

    My doctor gave me uceris becuase I was scared of the Pred side effects. It sadly did nothing for me and I had to take Pred after all.

  3. Lorena April 15, 2014 at 3:02 pm #

    Hi, like Cheyenne, I had not luck with Uceris either. I’m now on Lialda, Pred 40mg, 6MP, and canasa. Think this is the worst flare I’ve ever had. On pred for 5 days, see no improvement…..getting a bit frustrated. How long did it take you to see effects of Pred? right away? I’m still going with lots of mucus and blood. It’s scary!

  4. Paulette April 15, 2014 at 9:25 pm #

    Funny how these meds work differently for each of us. I have been on Uceris for almost 6 weeks. That in combination with mesalamine enemas and Apriso.
    The minute I started taking Uceris I felt better and stopped bleeding.
    I also have psoriasis and the Uceris cleared it up. Hoping and praying this will all hold together for a time!

    • mary burns May 8, 2014 at 3:08 pm #

      Thank you for this information. I’m experiencing the worse flare of my life and feeling very discouraged today. I also have full body psoriasis for almost a year following a short period of using Humira. I have been giving a lot of consideration to pursuing surgery but now will inquire about Uceris.

      • Paulette May 8, 2014 at 8:46 pm #

        mary
        I hope Uceris can work for you. It’s a cortisteroid that goes right to your colon. Look up the info from the pharmaceutical company.
        Psoriasis is coming back, but I will take that any day,… if I can only stay in remission because of this drug.

  5. Amy April 16, 2014 at 9:38 am #

    Budesonide hasn’t done anything for me either…but my dr said it does work for some people so it is definitely worth a try!!… have not experience any of the yucky side effects that are usually associated with prednisone. I would never take prednisone again in my life because of the awful mental side effects! Another thing that my doctor had not given me before until recently, that seems to work well, are steroidal enemas…they work better for me than Rowasa enemas. and don’t have the side effects that oral steroids do. :)

  6. Kyle
    Kyle April 17, 2014 at 9:43 am #

    I was put on Uceris this past Fall and due to my second round with C.Diff it literally kicked the Crap out of me :) Doctor told me that Uceris is not a route he wants me to take. So far the only successful med has been Prednisone. I am currently following the SCD and that is it. I don’t know if you have thought of it as an option but it sure beats having to deal with the side effects that meds can bring on.

    In flare type scenerios doctor wants to put me back on Prednisone but I am hoping to combat things SCD style! Best of luck to you and hope that things continue to improve for you!

    Kyle

    • Paulette April 17, 2014 at 4:00 pm #

      First the doctor gave me Pred but then I told him I I heard too many scary things about it.
      So he prescribed the Uceris. Said it was safer with less side effects. The drug is working. I hate wondering what’s going to happen to next! This blood sucking disease!
      I do get headaches and what I call “hot face ” in the morning, and then between 7 and 8 at night! Can’t figure that one out.
      Started a diet Breaking the Viscious cycle. It’s on you tube with success! I’ll try anything to get off of meds if that’s even possible!

  7. Lorena April 17, 2014 at 10:48 am #

    I’m trying the diet as well. Going on a week, but I don’t see improvement. How long does it usually take? Going to see my dr. in a week. He will probably put me on something stronger…never tried remicade or humira…but if I have to, I hope is temporary…..I did some research and noticed that I started with this flare up after two rounds of antibiotics in December….When I had my last big flare up back in 2008 I had also been on antibiotics right before due to a bronchitits. I’m starting to believe that bacteria in the flora has lots to do with it. I was recently tested for bacteria infection & paresites, but came negative.

  8. Kyle
    Kyle April 17, 2014 at 1:49 pm #

    It took a long time to get sick, it takes time to get healthy. The diet is not an insta-fix, I am still dealing with little things, but it beats what they are wanting to do next, i.e. surgery. I was on Remicade and Humira and had allergic reactions to both. Probiotics are a big deal, make sure if you are on the SCD you are taking SCD legal probiotics.

    In the end you have to make the best call for you. For me, I was out of options, all medications had stopped working and/or my body decided that I was done. They say give the diet 30 days before you throw it out, I say that at least 90 days, and make sure you stay true to it. It is very easy to cheat and even easier to eat something that you thought was legal, you have to make sure you read up on all legal/illegal ingredients. Google is an amazing tool when it comes to checking for SCD legal items, and pinterest is a great resource for recipes. Go Slow though, I am only beginning to introduce raw foods and I have been on it for 6 months.

    SCDlifestyle is a great resource, as is pecanbread. Pay attention to the food phase list. I am open to any questions if you have them, I am no expert but I am willing to help. Support is huge, anyway I can assist let me know.

    Blessings,

    Kyle

  9. Loren April 17, 2014 at 3:36 pm #

    Thanks Kyle. I hope the diet helps you. Does it keep you in remission?
    I’ve only been on the diet for about a week. I feel so weak because since I cut all carbs, sugars, etc. I’ve been loossing weight –and fast.

    I’m planning on making the yogurt this weekend froms scratch, I was wondering about the “legal” probiotics, but I don’t see it anywhere in the book, nor in the website. I need guidance on that. I went to Sprouts but couldn’t find any that didn’t contact milk. Can you recommend one? I found Culturelle….no gluten, no additives, no milk.

    Thanks for your responses.

    • Kyle
      Kyle April 20, 2014 at 6:45 pm #

      Starting the diet is super challenging because you are so limited and you are right, you are not getting the normal amount of carbs your body is used to, if you can make it the diet does open up but it takes time, I have been on it for 6 months and am just now starting to introduce raw foods. Make sure you don’t overdue the adding of foods, I know it’s challenging but your gut needs time to heal. I usually go 2-4 days before introducing new foods.

      I use this probiotic, http://www.giprohealth.com/scdophilus10.aspx , it is made specifically for SCD, I started with the 3 billion and have worked my way up to the 10 billion and now am taking 2 ten billion pills a day but it took time for me to get here, it’s all about repopulating the gut with good bacteria but don’t push it.

      As far as “remission” goes, I am learning that is a tricky word in the medical profession because most doctors say if you are not experiencing “symptoms” you are not in remission. I am dealing with some scar tissue pain right now and am working to heal that naturally but just like anything it takes time, but as far as Crohn’s symtoms, BM’s are very normal, energy level is normal, still am experiencing cramping but believe that is more from scar tissue than crohn’s.

      let me know if you have any other questions. I am here to support and help.

      Blessings,

      Kyle

      • Grant May 8, 2014 at 10:49 am #

        Hi Kyle,

        Good to hear about your scd diet success. I’m also 6 months in and doing good. Finally off all meds and symptom free! Feel like I’ve had no help whatsoever from the medical world and I’m currently changing doctor as he seems a tad pissed off with me for stopping my meds. What I wanted to ask was if you would at all be interested in starting a group on Google+ or Facebook where we can share information? I still have a million questions about the diet, supplements etc. and wouldn’t mind sharing ideas and thoughts with other people who are currently on the diet or are looking to start.

        All the best.

  10. Roberta April 18, 2014 at 8:55 am #

    Found this article to be very interesting. I have never heard of “Uceris”. Several years ago I was put on Entocort and then told by my insurance that I would have to take its generic, which was Budesonide. It has worked pretty well for me .
    I am taking 3mg, one a day. The diarrhea stopped except for 1 – 2 times a month and lasted 1 -2 days. Before that diarrhea was 3-4 times a week. About every 6 weeks I would throw up , have diarrhea along with that and then start to get better. I have been fortunate not to have all the bad symptoms that many suffer from such as bad cramps and bleeding. Except a week ago, for the first time, while I didn’t have diarrhea, I was surprised to see in the toilet that my stool was covered with what looked like bloody mucous. Nothing since then. That is the first of any kind of incident for 7 weeks. I told my doctor I would like to get off budesonide and started taking it every other day. Now I take it every 2 days. With that , I also take the 2 teaspoons of organic apple cider vinegar in 8 oz of water first thing in the am. Then I take 1/2 teaspoon of powdered L-Glutamine in water. After I eat, I take a good (refrigerated) probiotic along with the budesonide. Don’t know if I am taking these in the right order or time of day but so far (except for the bloody stool) it seems to be working. Budesonide is the only drug I take for uc.
    While budesonide was working, (at least I’m blaming it on the budesonide) it seemed to be making my hair fall out as well as growing hair on my face. Nowhere else, just my face. Bad news if you’re a women. When I asked my doctor about the hair growth he answered “yes” it could do that.
    Thanks for this wonderful helpful website.- it lead me to try L-Glutamine which I feel sure made a difference.

  11. Paulette April 18, 2014 at 9:06 am #

    7th week of Uceris
    Doing well other than side effects which include the shakes, periods of being wired up like too much coffee, and eing sleepy and tired.
    I will take those side effects rather than 10 to 12 BM’S a day, diarehea, blood, cramps ad fever!
    This is a temporary drug, changed my diet to Breaking The Viscious Cycle, a MUST READ book for we have UC.!

    • Amanda C
      Amanda May 28, 2014 at 12:44 pm #

      FANTASTIC book. Everyone should read it.

  12. Phil May 8, 2014 at 12:55 pm #

    If Remicade worked — why the 2 year break & why didn’t you go back to it ?
    I have been on it 2 years & it’s as if I never had UC.

    • Alice B June 7, 2014 at 1:51 pm #

      Phil, great question and one that brings forth a reminder to listen to other GI’s in your practice.

      I’ve been with this great practice for years, first seeing Dr L. then due to his packed schedule they moved me to Dr G. who is great but newer with less anecdotal experience I learned.

      I was started on Remicade by my first GI, Dr. L, with a full understanding that it should be a life-long med. I agreed after weighing the risks and was doing fine. During that time I was moved to Dr. G. I was still in remission with an occasional minor flare. After doing many infusions he went over my list of meds and said “Eh, we can stop the infusions because youve been under control for a long while.”
      I immediately mentioned that Dr. L. said it was a lifetime commitment to which Dr. G. replied that the percentage of people needing it again and having a “reaction” was very low.

      Ugh! I should’ve gone with my gut which was saying ‘don’t stop Remicade’ but I’m just a lowly patient and who am I to question the specialist… Ugh again.

      So when my UC came back hard, not responding to anything even prednisone and even 3 new infusions of Remicade Dr. G. was openly stumped, called me an enigma and put me back in with Dr. L. who’s first question to me was “Why did you stop Remicade?” Sigh.

      Because the latest three rounds of Remicade failed Dr. L. ordered a new blood test that measures the amount of Remicade in your blood and checks if you have antibodied to it.

      Im so mad the other Dr. didn’t think of this test before I sat through the failed infusions.

      So there’s your answer. It wasnt because of my non compliance.

      Now Ive started Humira as of May 1st. It seems to be working just a little so far but the shots suck, hurt and having to do it myself without freaking out is beyond a hassle.

      I wish I never stopped Remicade.

      Alice

  13. anton May 8, 2014 at 9:24 pm #

    I have only been on salazopyrin. Take fresh fruit & vegatable juice (one’s with low sugar), eat fruits daily, probiotics. So far so good.

  14. Paulette May 28, 2014 at 2:58 pm #

    Read this fascinating research on probiotics and how they react with UC.
    At bottom of page you will see a slider that takes you to the next pages…just push it forward.. All I can say is WOW!

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