What Is the Next Step AFTER First Round of Prednisone?

Jessica Dayton, Ohio ColitisIntroduction:

Update from being diagnosed with ulcerative colitis in April 2012. My first post was “Distressed in Dayton”
Currently as of now on 15 mg of prednisone, 10mg of buspar, and bentyl.

Current Colitis Symptoms:

Symptoms that I currently have not including side effects to the trials of medications are, bloody stools from time to time, insomnia, still some mood swings, exhaustion, headaches,hair loss, tremors, muscle cramps…. and terrible anxiety!

My Story:

When I was first diagnosed I was on sulfinazine,& bentyl. Those meds did nothing for me and the doc who put me on them….. well, to be nice I feel he lost his head up someones butt! Went and seen a new GI doc at the end of May, 2012 who started me on prednisone 40mg to taper by 5 mg every two weeks ( and kept me on the other meds as well). I had every mild and severe side effects to the meds so got to taper after 9 days from the prednisone. The anxiety and the stress was another big factor in this who process since I was working, going to school and clinicals while tryin to figure all of this UC stuff out. UC has changed my life in more ways than I could of thought.

I feel I have kept my distance from people

since my mood would change so frequent

and didn’t want to offend anyone

from the crazy side effect of the meds.

I have always considered myself to be a strong person but this def has shown me different. I am thankful to have my mom helping me through this process. She has IBS so understands some of what I am going through & has been my rock through this. I am currently down to 15mg of prednisone and even though the mood swings aren’t as extreme as they wore before, I feel sensitive to the slightest things and symptoms are coming back! I have an appointment to see my GI doc on Aug 25th! not sure how that will go. With no insurance at the moment, docs dont seem to want to really help. I am most concerned about not being able to get off the prednisone or being put on something else that is more potent thus probably having worse side effects than the prednisone. I am also concerned about this effecting how I think differently about my outcome in life with this disease….. I’ve worked very hard in my program in college and don’t want it to be thrown away because I couldn’t deal with all the things that come with UC. Does anyone else have these concerns? Anyone feel that they don’t speak to as many friend s since their diagnosis? I need something better than buspar for the anxiety but nothing too strong to where I cant function…. anyone have any suggestions? will I ever get back to the person I was before all of this started?

Where I’d like to be in 1 year:

In a year I would like to have graduated from my program ( 9 months left). Off prednisone, in remission, have anxiety under control so I can move my mom and myself out to either SC or NC to enjoy my new career and let her relax since she has done so much for me. I just want my life before UC back!

Colitis Medications:

Sulfinazine, bentyl, prednisone, buspar, xanax, cymbalta, celexa.

Sulfinazine and bentyl didnt seem to do much of anything for me beside make me feel sick to my stomach… still had 15+ bathroom trips a day and couldnt keep fluids in my body.

Prednisone (at 40mg) I felt was the devil….. the side effects were so intense, but after tappering it seemed to help sypmtoms but still with side effects even now at 15mg just not as bad.

Xanax 0.25mg, seemed to help with the anxiety but doc didnt want to keep me on them since they can be addictive so they worked but he didnt want to keep me on them.

Next option was cymbalta…. 5 days of that + the prednisone I felt like I was on my way to the nut house. It did nothing for the pain, anxiety, caused high B/P and seems to bring back UC flares.

Celexa…. Oh celexa how I hated you even more…. I thought cymbalta was bad but celexa was more intense with an even higher B/P of 178/105 resting. I could watch my pulse on my wrist in three different spots, it gave me major depression, made me want no people interaction and gave me a crazy zombie feeling.

Buspar doesnt seem to touch on the anxiety when it is high. Which when I have anxiety it is through the roof so I still get to experience the burning in my neck and pain in my shoulders as well as the temors and fast heart rate.

written by Jessica

submitted in the colitis venting area

Tags: prednisone





11 Responses to “What Is the Next Step AFTER First Round of Prednisone?”

  1. RichaAugust 23, 2012 at 9:52 am #

    so lucky your mom is there for you!

    Take care

    • Jessica from Ohio
      JessicaAugust 27, 2012 at 12:31 pm #

      It is nice having my mom help me out with all this….. she likes to read so has been looking into some of the herbal supplements that may help me out. She has IBS so she kinda knows some of the stuff that goes on. thanks for your comment richa

  2. BevAugust 23, 2012 at 1:40 pm #

    HI Jessica…

    No, you won’t be the same person as before all of this…you’ll be an even more fab person! It just takes time to adjust. You will…we all have.

    AS for pred…I took it once for pneumonia, and I hated the side effects! I was bitchy, and extremely anxious. It felt like I was sometimes having panic attacks while I was on it. It was no picnic getting off it for me, either. I must be ultra sensitive because I had the worst headache, nausea, and was so tired I could barely stay awake. I was only on it for five days! Never again. I don’t know why docs prescribe it, because your symptoms usually come back after you stop taking it.

    I am in remission now, and the key is finding what will get you there. We are all different in this disease. That’s why it’s such a pain in the ass…no pun…really…lol. I took probiotics, for at least two months before they really worked, and then was able to go off all of my meds! I’m not telling you to go off your meds. Try some natural stuff first. You might feel so good, you actually can go off meds, too! Everyone has to find what thing, or things, work for them. I wish there was one answer!

    Cheers, and hang on. It always gets better!
    Bev:)

    • Jessica from Ohio
      JessicaAugust 27, 2012 at 12:43 pm #

      thanks for the encourging words Bev! Sorry to hear you got put on them when you got pneumonia. I am going to school for respiratory therapy. I have this semester which starts tomorrow (8/28/12) and one more to go before I graduate! I def have gotten an eye opening experience from being on prednisone myself….. seen it in some of my past patients charts & when they were grumpy just thought that was how they were.

      I have started to take some probiotics every morning (started about a week ago) …. also when i seen my GI doc last week asked if it would be ok to take bilberry, garlic, and kava kava. He said it was fine.
      Havent messed with the bilberry and kava kava yet, but I am doing the prednisone, bentyl, buspar, garlic supplement, and probiotics.

      Garlic supplement is a natural herb that helps the immune system, and many other good things! Plus taking it in a pill form, you wont scare off people when you talk to them from garlic breath. Thank you for you support! I will let you know how I do with the supplements.

      I will see if I can get off the prednisone still at 10mg as of now, go to 5mg next week (for two weeks) and if no flare then hopefully no more of those crazy lil white pills! You are right about what you said….. they take care of the symptoms but when you are off them they come back, Im praying that is not my case. WISH ME LUCK!

      • BevAugust 28, 2012 at 2:09 pm #

        Luck!!

        Cheers:)

    • Ramon GonzalezJanuary 21, 2013 at 6:45 pm #

      Can you please let me know the brand of probiotics your taking

      Thank You!
      Ramon Gonzalez

      • Jessica from Ohio
        JessicaJanuary 22, 2013 at 8:25 am #

        sorry it took me so long to resond Ramon, I am on campus right now so dont remember the exact name of the probiotic I take but I will update you when I get home to let you know.

  3. SteveAugust 23, 2012 at 2:45 pm #

    Hi Jessica…Thanks for sharing your story. Sorry if I repeat anything you’ve already heard. I went back and read your first story too. By the way, your first doctor was(probably still is) a totally incompetent ass unfit of calling himself a doctor.

    For once, I don’t know anything about your medications so props to you! ;) I also don’t know if your anxiety was pre-existing or is solely a result of UC/steroids. If it is UC related meaning you get stressed about what might happen, you should be able to handle that naturally much better than with any medication. If it is steroid related, I am surprised a doctor thinks an anti-anxiety medication will curb it. The steroids are messing with your hormones. Medications that curb anxiety/depression can do that as well. In other words, you already have one out of control variable messing with your hormones…why add a second medication that is going to do the same? It might fix it, sure, but it is a long shot and you have no idea what is and is not working. If it was pre-existing, I can assure you we’ve all had stressful times so no worries…and yours seems all because you are so busy…so…my advice?

    I know it may be impossible, but is there a anyway you can put your clinicals on hold? It would certainly help and you could get back to it as soon as you were feeling up to it. If that is not an option, I’d suggest talking to someone. I’ve been where you are in more ways than I can explain so you are welcome to talk to me if you like. Talking to someone will help you lower stresses and help you stay focused, there by helping your UC symptoms(I’ve found when I can focus by body likes me—when my mind is all over/stressed, my body shows me how it feels. Other things…have you looked into other treatments? I know how work and school can get in the way of getting better first hand—so you opt for the prednisone because it works minus side effects—but it would likely help you to get away from the prednisone. Be it diet, probiotics, other supplements, yoga, etc.

    Whatever you do, you’ll find a way to be very close to the person you were before this started—just way more awesome than you already are. You’ll be different in that you have a whole new appreciation for life and will eventually realize you are way tougher than you ever knew…but all the changes will be good ones. If I can be of any help, let me know and keep us updated. Steve

    • Jessica from Ohio
      JessicaAugust 27, 2012 at 1:15 pm #

      Hey Steve,

      Yes I do my research on my medications….. by the time I graduate in may of 2013 I will be a respiratory therapist and have a partial background in GI with all the research I have done.

      As for the anxiety…. it was not pre exsisting. It started after wonderful prednisone came into my life. I didnt want to go to prednisone route, but when I was first diagnosed the sulfazine and bentyl werent cutting it. I was always sick to my stomach, had 10+ bathroom trips and on top of that was peeing like i was a pregnant woman (which Im not), also had no energy, and would get these weird spells of pain wheather it was my back, neck, and sometimes little bit of everything hurt. As for the anxiety though, the lowest dose of the xanax did work! But family doc didnt want to keep me on it since it can become addictive. Buspar has been doing the job, but my summer quarter wasnt as stressful. I will probably have to see him after this quarter starts, I know it will be stressful, and if it is as bad as it was when I was in spring quarter I will need something to knock it back esp if I have to stay on the prednisone.

      Your comment about the first GI doc I seen is spot on! =) that doc was a jack ass….. like to go prob him just for fun, just minus the drugs to knock him out…. then put him on 40mg of prednisone and see how his self rightous ass does on that!

      I cant take a break from school =( so I just will have to work through any issues that may arise for the next 9 months. Sept 20th is when I will be done with my first round of prednisone so we will see if I can go without a flare or its back to the lil white devil pills!

      I started taking probiotics last week and a garlic supplement everyday. I also asked my GI doc about bilberry and kava kava….. he said it was fine to take those as well but i havent as of yet. Want to see how the probiotics and garlic supplements do first. Supplements can also cause side effects so dont want to take too many things at once and not know what is causing what I dont like.

      I know diet is a big factor as well….. lol, I think I have killed half of the chicken population since all this started…. when I was on high mg of prednisone I could cheat and eat what I wanted for the most part, but once the tappering started I had to get myself back into check on the diet. Its hard to be on a diet with my schedule. There are some weeks yeah I have the time to prep my food for the week and then other times I dont and have to eat what is around.

      While still studying for my RT related things for school I also kept myself up to look up things about all the GI stuff. a good site for supplements and herbs for UC is http://www.homemademedicine.com and use the search bar on that site for UC. Pineapple is something else that is supposed to be good for us UC’ers. I will keep you updated on how things go. Thanks for the kind words and advice.

  4. TambyOctober 17, 2012 at 10:10 am #

    Jessica,
    Thank you so much for sharing. So sorry you had the awful side effects from the prednisone. I am currently on 60mg and can not wait to taper off. I am gaining weight like crazy my face and neck do not look like me anymore and can I just add acne!! Small bumps all over my face .. Sad thing is I am a skin care therapist and know there is little to do for my acne considering it is the meds trying to escape from my body :( I am worried about tapering, I am finally having regular movements that are not bloody and free of pain. ( past 2 days ) am afraid that as soon as I start to taper the flare will come back up..
    How was your appointment with the Doc? Hope all went well. I go back next week and am curious to see what he has to say , last visit he said he wanted to refer me to a specialist… I think he is stumped as to why my UC wasn’t responding to the Pred as he thought it would.
    Thanks again for sharing…
    Tamby

    • Jessica from Ohio
      JessicaJanuary 22, 2013 at 8:24 am #

      Hey Tamby,

      so it has been this long to reply back to you. I wasnt getting the emails saying you wrote me back, but it is working now. The doc visit I went to went pretty good, was more like a follow up. I have to go see the GI doc tomorrow Jan 23,2013 due to some issues that UC is giving me.

      I didnt do well with the 40mg of prednisone so Hats off to you for being able to handle the 60mg. I got the moon face and puff up some while no the steroids too. Its just something that comes along with the meds. I hope you are at a lower dose now and hopefully on your way to remission. I had a short lived remission ( about 4-5 weeks) I spoke too soon about it and think I jinxed myself and UC is hating me once again.

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