To Prednisone, or Not to Prednisone, That is the Question

Introduction:

Hi, I am a 34 year old mom of 2 boys who ages 8 and 6. I live in Amsterdam, but am originally from the UK.

Some more about me:

We’ve been living in Amsterdam for 10 years! I love living here, it’s more like a village compared to London, and a great place for kids to grow. I love biking around the city and being outdoors with my family. The city is full of great cafe’s that I love hanging out at with my friends, meeting them for lunches and coffees :) I have the liberty to do that as I am a full time SAHM.

Symptoms:

Bloody D,
cramps,
loss of appetite.
light headedness at times.

To Prednisone or Not to Prednisone

Well I was diagnosed with UC in 2010, a few months after my father died, it was indeed a trying time for me, and I guess something had to give… and it was my colon! FYI My father died of colon cancer.

Well on a brighter note, I was given pentasa and all was well… until november 2012, right around thanks-giving AND we were having friends flying in from the US to celebrate thank-giving with us here in the Netherlands. Well with beclomethasone enemas and diet changes I managed to get to remission by early January.

Unfortunately, I am back in a flare for over month, I think it was triggered by a flu/bug that I caught, well then we moved houses so I didnt really pay attention to it and yes stress levels were high. Anyhoo, my symptoms REALLY deteriorated 8 days ago, with severe cramping, bloody chronic d, I’ve lost about 10kg and have been in bed since. My doctor has prescribed me prednisone, which I have here sitting on my side table… but I have not taken it… it is to start at 40mg and ment to be a 12 week course. I had been trying the beclomethasone enemas for about a month along with my pentasa 2g, 2x a day, but no joy.

I really didn’t want to take the pred, have been trying the natural route, recommend by Bev :) taking the 50billion probiotic, l-glutamine before lunch and astaxanthine after. I’ve also been eating pretty limited, and have gone gluten free since the ‘bad’ flare, so about a week. I’m currently eating yogurt with blueberries in the morning, chicken broth for lunch and some salmon/chicken with spinach and rice for dinner. My d is still bad. My appetite is at zero at the moment, and I just feel comfortable when I’m lying down as then I dont feel any pressure on the colon or urgency. At this moment I am feeling like dropping all the meds and trying a FT at home, I’m getting desperate.

I’d appreciate any advice, should I just take the prednisone so I can start functioning properly??

Medications:

Pentasa 2g granules, 2x a day
Beclomethasone enema

Probiotic
l-glutamine
astaxanthine

written by Esme

submitted in the colitis venting area

33 Responses to “To Prednisone, or Not to Prednisone, That is the Question”

  1. RMay 18, 2013 at 9:30 am #

    Hi,

    This is my first comment on this site after reading it for a month or 2 now.

    I also live in The Netherlands, and was diagnosed with UC this January. Not knowing to much about the disease, and trying to figure it all out, my UC got real bad at the end of February, I got atmitted in the hospital with extremely low blood values, and very high inflammation values. I know for a fact in these 14 days I was hospitalized, I would have literally died, without the help of some antibiotics i don’t know the name of. And also the help of Prednisone.

    Prednisone is not a fun drug, but with me the side effects were minimal, I had more engery with it, and felt much better overall.
    My inflammation values dropped within a month from 26x as high as it should be, back to normal levels again.

    Right now I am 3 months furhter, and I am feeling superb. Yesterday was my last day of Prednisone, and I am in full remission again. Right now I only take Pentasa to maintain the UC.

    I also read alot of stuff about the natural route, and I do believe that when you don’t have a inflammation of the UC, it is maintained better with a good diet, than when you just eat whatever is available.
    but when your doctor prescribes you prednisone, I assume he (or she) did it for a very good reason. To get you in remission again.

    I think it is great that people experiment the natural way, and when that works for them it is absolutely great, but I think it is better to experiment with that in remission, than in a full flare up you are experiencing right now.

    Not listening to your doctor is a bad idea, especially during a flair up in my opinion.

    • RMay 18, 2013 at 9:45 am #

      Reply to myself. The term that I would have litteraly died is a bit exaggerated. But that was what it felt like at the moment in hospital. (I think people can relate that this is what it feels like during a big flare up)

    • JackieMay 18, 2013 at 4:00 pm #

      Hi there. Our stories are very similar. I am a 36 yr old mom of 3 ages 6, 4 and 2. I was also diagnosed about 2 1/2 yrs ago after the death of my dad who also died of colon cancer. I’ve been on pentasa since then but have only been able to stay in remission for 6 months at best between flares. Prednisone is the only thing that gets me into remission. This is currently my 4th flare and I swore I would never use prednisone again after the 3rd but here I am. This current flare has caused me an extreme amount of pain with my bowel spasms. I had never experienced pain like that with my colitis and can not afford to be bed ridden with 3 small kids so there it …prednisone. I’m also starting imuran and am currently on 100 mgs working up to 150. Again, I’m not happy to be taking this drug but feel like I have no choice.
      I’ve been reading on this website a lot since being diagnosed. It is literally my only support/ information fountain for this disease. I have a wonderful husband and family but no one to talk who is going through the same things. I have never actually commented though so this is a first! Everyone needs to make their own decisions regarding treatment and what’s best for them and their family. I just wanted to share a bit of my story with you since we have experienced some of the same things. I wish you all the best and hope you feel better really soon. I also like to remember that things could always be worse and I am lucky to be surrounded by wonderful blessings every day (my beautiful family).

  2. TimMay 18, 2013 at 12:29 pm #

    I’m a firm believer that the quality of life is important …. so I would use the prednisone for the shortest duration possible. Get into remission then eliminate that poison. Begin using natural supplements like proboitics, l – glutamine, evening primrose oil, evoo, just to name a few. Research other possibilities via the internet regarding UC , including this site. Take it from a veteran UC ‘er … since 1991. GOOD LUCK!

  3. Caroline
    CarolineMay 18, 2013 at 1:04 pm #

    Hi Esme,

    Sorry to hear of your flare – they are no fun! I am coming out of my first one – I was just diagnosed in January. I, too, lean heavily towards wanting to treat things more naturally and am scared of many of the medications that are prescribed for UC. Prior to my colonoscopy where I was formally diagnosed, I had tried treating it with probiotics, L-glutamine, vitamin D, and the Paleo diet. These things did make a difference for me and made me realize that I was onto something, but it wasn’t enough to get me out of the flare. My doctor prescribed Prednisone (40mg stepping down over 2 months) and reluctantly, I took it. It was like magic – within a couple of weeks, the diarrhea reduced from 20-25 times a day to 3-4, with the bleeding eventually leaving. Within a month, things were solid. I did have some numbness and tingling in my legs from the prednisone, and my feet and ankles became weak – however, all of that improved quickly once I stopped taking it.

    In the meantime, I am taking Apriso as a maintenance drug with the understanding that if all goes well I will wean off of it after a year. I believe that for my case, the Paleo diet, a great probiotic, and supplements are key to my health and in maintaining remission. I am hopeful that I won’t end up in a flare again and am confident about the future. However, I needed that Prednisone to jump start things for me – I wouldn’t change a thing!

    Best of luck and I hope you feel better soon!
    Caroline

  4. bevMay 18, 2013 at 2:35 pm #

    Hi,

    So, you were fine you think up until the flu bug? Were you on any antibiotics for that at all? Or, did you take any advil and or cough / flu medicines?

    I am so happy to hear that you have been on the same stuff that I’m on…were you in remission without any other meds, until you had this flare?

    Bev

  5. LorraineMay 18, 2013 at 2:35 pm #

    Hi Esme

    Sorry to hear you are not well. First of all, blueberries gave me diarrhea, so be careful.
    I was on prednisone for 14 months straight, in hospital 3times during that time to received blood each time.
    In hospital I was on 60 mg and came home to 45mg. of prednisone. The minute the doctor tried to lower the dosage below 45 mg, I began to bleed. No other meds worked. I was sick. So I pretty much stayed at 45 mg the entire time I was sick. I then had my colon removed Ya!! I’ve never had a flare up, I just got Colitis, stayed sick for a year and then had the surgery. So I can’t speak to the effects of short term use, as I was on it for so long.
    We all know prednisone is poison, but it can help you to get well. I don’t think there is anything wrong in taking prednisone short term, but make dam sure you are not on it too long. I wish you good health and get well soon.
    Lorraine

  6. bevMay 18, 2013 at 2:39 pm #

    Oops, I see that you are still taking meds…I hate to say it, but sometimes the meds can actually start making things worse, and working the opposite of how they are supposed to, right out of the blue! Strange but true. I was on asacol just before I went all natural, and it was making my D worse, making me nauseated, making me have no appetite, giving me worsening cramping, etc…

    It was like my body simply started rejecting the drug that I had been on for 14 years!! It happened right out of the blue.

  7. EsmeMay 18, 2013 at 2:45 pm #

    Hi guys, wanted to reply as soon as this went live, I am in hospital… Things got really bad, I started taking prednisone 13
    Days ago, but it didn’t work as it should do, sorry about typing, have a drip in my arm. I’ve been here for 5 days and desperately hoping to improve soon, my diagnosis went from mild proctitus to severe pancolitis. Doc has taken me through all drug options and surgery if they don’t work out :( I am really scared. Feeling so nauseous too, they have me on a feeding tube and I can barely keep anything down. Bleeding is still really bad, just blood coming out really… Things can really deteriorate quickly…

    • PeterNZMay 19, 2013 at 2:33 am #

      I was there too Esme.
      A drug called “cyclosporine” sorted me out (and I tried just about every other drug they had first). Can you ask if it is possible to have this? In my case I had to have a special sign-off to be able to get it.
      Hang in there baby,
      Peter

    • bevMay 19, 2013 at 5:18 pm #

      How are you today Esme? Are you feeling any better yet? I know it’s only been a day…but are you taking the cyclosporine? Are you less nauseated? That’s the worst…I swear I was nauseated for 14 years straight…no wonder I was skin and bones.

      Yes, things can deteriorate very fast sometimes.

      Please keep us posted. This could happen to ANY of us.

      Bev

  8. PeterNZMay 18, 2013 at 3:46 pm #

    I’d be dead without pred

    • bevMay 19, 2013 at 7:23 am #

      That could be a song…od the name of a rock band…

      Dead without pred…lol

      Sometimes pred is a necessary evil…

  9. SharonMay 18, 2013 at 5:18 pm #

    I have had UC for well over 20 years. I have used prednisone several times for very short terms. For me the results were dramatic and I quickly achieved remission. My side effects were increased appetite, trouble sleeping (took Ambien as needed), and minor shakes. All went away when I stopped the pred. My energy level went way up too. One caution is to absolutely wean off slowly. Your body naturally produces steroids but can stop production when you are taking synthetics for a long time. About 3 years ago, I was in the hospital taking 125mg of pred for 5 days by iv. I had taken 40 mg for about 5 days then went to 60mg at home before being hospitalized. When I eventually got down to 10mg of pred, I ended up having pred withdrawal. My pupils were very dialated, my hands shook, I couldn’t read, I felt high as a kite, I felt completely ADD even though I have never had that. I walked into my GIs office and told him I couldn’t wait to get off the pred because it was making me crazy. He took my wrist and checked my pulse and told me I actually needed to go back up on the pred and come down slower.

    It is a crazy drug but I would absolutely take it again if I needed to because it really stops my flares completely. I agree with the other comments that natural is great when it works but when it doesn’t sometimes the drugs are the best option.

  10. shelly in maineMay 18, 2013 at 5:26 pm #

    Oh Esme,
    Hang in there. Keep reading about the meds and surgery stories. It will actually help you understand what to expect and look for for side effects etc and help alleviate some of your fears.
    Wishing you all the best.
    You have a whole UC community here for you!
    :-) Shely

    • shelly in maineMay 18, 2013 at 5:28 pm #

      Oops damn tablet…typo my name:-) :-) Shelly. Best and well wishes.

  11. EsmeMay 19, 2013 at 4:52 am #

    Hi Peter,

    Yes if the pred doesn’t kick in the doctor has said my final option is cyclosporine used in cases where the patient is not responding to the regular drie therapy. I also had a surgeon visit on behalf of gi; to explain that if I don’t respond to the cyclo and things deteriorate they must be ready for all outcomes. I’m glad you mentioned the cyclo, makes me feel a little better to hear you had good rsults with it.

    My feeding tube came out last night, I sneezed and it got mislogded, so they took of out, I have been SO nauseous with that thing, I have a bit of respite today. Doc said if I can drink 6 nutri shakes its ok… I’m trying.

    Thank you so much everbody for your support, I wish I could write more coherently, but I am typing on my phone with the iv in my arm….

    Esme

    • Tom from Northampton
      TomMay 19, 2013 at 3:11 pm #

      Esme

      I too have received IV ciclosporine. IV steroids werent working.

      Worked wonders for me, worked within two or three days and was out of hospital 6 days after that.

      That was september last year. I have had a colectomy 2 weeks ago though as the next drug after ciclosporine, mercaptopurine stopped working for me. Im feeling great now though . Good luck either way and if you have any questions about Ciclosporine or surgery I am more than happy to help. Was on Oral ciclosporine for 3 months following hospital aswel.

      Good luck

      Tom

      • bevMay 19, 2013 at 5:15 pm #

        That’s great, Tom…that you are feeling great now.

        That is what life should be…

        Bev
        :)

    • AdamMay 19, 2013 at 8:00 pm #

      Esme,

      Hang in there! Been reading your story unfolding and keeping fingers and toes crossed that you get some relief soon, and you are going to. What have always found incredible about UC is how things can often go from really good to really bad very quickly, and at the same time its also most certainly possible for things to go back the positive direction once again very fast.

      No matter what, you’re going to get through this. I wish you and your fam the best in the coming days.

      Best regards,

      -Adam

  12. Jen From UK
    JenMay 19, 2013 at 8:37 am #

    Sounds like you’re having a really rough time Esme, hang in there fingers crossed something works for you soon! Very best wishes x

  13. Kelley CMay 19, 2013 at 8:14 pm #

    Hi,

    I am 36 and was just diagnosed three months ago. Since then I have spent a ton of time on google and on this website and what i have learned is everyone is different. Two weeks after my diagnosis I got so sick that I have since been told by my dr. and the office staff that I scared the crap out of them. Apparently losing a ton of weight and looking like the walking dead isn’t a good look for me. Anyway, he put me on prednisone but it was set up to where I started tapering after two weeks. It is 100% what has put me on remission and as I taper the prednisone I feel better and have less side effects. However, my dr told me last visit that the goal is to not use prednisone regularly because of the long term side effects. My ultimate goal is to be free of all meds but I say take it of you need it. Hope you’re feeling better very soon!!!

  14. Wendy
    WendyMay 19, 2013 at 8:25 pm #

    I hope you’re feeling better soon. Prednisone worked the first flare I had, but the second one I was too far gone for it to have an affect for a while. I had IV Solu-medrol for five days and then I had to take prednisone for about six months. I eventually got off all meds and only take natural stuff. I hope you can pull out of it. All the best. I do take prednisone if I must, but I try everything to stay away from it. Evil poison that stuff, but it can work when needed. And I don’t take it if I don’t absolutely have to and I try to find every possible way out of it.

    • MarcusMay 20, 2013 at 8:44 pm #

      Hi. What other types of natural stuff have you tried?? I have done Chinese herbs/acupuncture for pain/stress and cramping..I am coming down off my Prednisone dose and never want to have to take it again!! You are right! EVIL DRUG!!

      • Wendy
        WendyMay 22, 2013 at 12:13 pm #

        I take L-glutamine and probiotic as per Bev (this has been my first week taking it ever and it seems to be working), astaxanthine (inflammation reducer), chlorella, spirunilla, and Melaluca daily vitamin. I try to take vitamin D and I also take iron but the latter two I haven’t found a good brand so I tend to skip those. I was in a very bad flare and now after adding L-glutamine and probiotic I am much better, but not yet good. I got into the flare by stopping everything and eating whatever I want… crazy I know, but I can’t stand being restricted. I’ll have to learn to live with it though. I hope you can find something natural without using drugs, but if you must have drugs, use them of course. I just can’t stand them.

      • Wendy
        WendyMay 23, 2013 at 10:50 am #

        Oh, I didn’t mention, I’ve had a lot of people tell me to try acupuncture. None of them had UC, they just told me it might help. I may try it some day… the thought of needles though all over me doesn’t seem attractive.

  15. KenMay 20, 2013 at 1:08 pm #

    Esme,

    I was in the same situation back in November of last year. Asacol was doing nothing for me, and I had been in a flare for several months. I couldn’t take the bleeding and emergency runs for the bathroom any longer. I decided to get on Prednisone, and find relief.

    Then I found this site, and decided to give supplements a chance. December 1st I started a Probiotic, L Glutamine, EVOO, a multivitamin, and flax oil. I felt improvements the first week, and every week there after. There were setback days during the first couple weeks in which I questioned the effectiveness. But I stuck with it, and after a month I was a new person. Two months in I dropped the Asacol. Six months in I feel great, and eat whatever I want.

    My biggest reason for avoiding Prednisone wasn’t the side effects. It was that it only works so many times, and then it stops working as well. Then on to the next drug, which loses effectiveness over time. I just want to go as long as I can with out it, so if I ever do need it down the road, I can keep the meds at a minimum.

    Everyone is different, but for me, the Glutamine seems to be the most influential on my symptoms. When I have a day that I felt a little out of sorts, I take an extra bit, and feel better the next day. I take 10 grams every day, and up it to 15 when I want some help.

    However you decide to fight this disease, I wish you luck. We all need it!

    • bevMay 20, 2013 at 1:19 pm #

      Ditto Ken!!

      Every time a little ‘something’ seems to be stirring in my colon…I just up the L-glut a bit for a day or two and voila!! I’m good again.

      Love your post. Again, like I have said over and over again…you do have to give ‘natural’ time to work. Natural is not like the medical drugs…no fast results or quick fixes…maybe that’s why they seem to KEEP WORKING, where the meds definitely always seem to STOP working.

      :)

      • MarcusMay 20, 2013 at 8:41 pm #

        Hello,, Where can I find some of this L-glut and how is it taken??

        • KenMay 22, 2013 at 8:17 am #

          Marcus,

          I get mine in the health section at the Kroger grocery store. I buy a tub of it in powder form. I mix it with a glass of water.

  16. MarcusMay 20, 2013 at 8:40 pm #

    I am coming off a three month titrating dose of PREDNISONE> Although it seems to have helped things “cool down” with the bleeding, it has almost made me go completely crazy!! I was unable to sleep for more than 3-4 hours at time at first..I was so jittery that I could barely write my name..I felt so anxious and irritable…got my MD to prescribe me Clonazepam/XANAX to calm my butt down! They help and things are getting better as far as that goes now that I am on 15MG..You do not want to allow your flare ups to get too bad bc as you know they will be twice as difficult to “cool down.””

  17. AmandaMay 22, 2013 at 8:30 pm #

    Currently I am taking prednisone enamas. Doctor says it will get it more to the source and should reduce side effects. I certainly notice the side effects though (at first I couldn’t sleep more than 4 hours a night, increased appetite, weight gain… Especially in my face) unfortunately that’s just the way it has to be for me. I am thankful the prednisone is helping and making me a functioning person but I still hate being on it. I have had uc now for over a year straight and lost almost 20lbs in that time (I was only 125lbs before so I really couldn’t afford it) . Feeling weak all the time was worse than the prednisone. Up to you, but I personally don’t know what I would do without it.

  18. SudarshanMay 23, 2013 at 5:26 am #

    Hi Esme,

    About 2 months ago, I lost 12Kgs in a matter of two weeks and had to run to the bathroom 15-18 times a day due to severe Colitis. Prednisone really helped me get back to normal and I finished a 1 month course (I started with 50mg a day, down to 20mg now). I have gained 5 Kgs since and feel like I got my life back in control. The benefits of taking Prednisone in your situation outweighs the side-effects in my opinion.

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