I Refuse to Take Prednisone

Intro:

Hi, Cynthia Here :)
this will be my second post on the site, been living with UC for the past 7 years. Getting mentally ready for second colonoscopy

What Does Cynthia Like to Do….

Go to the movies

Symptoms:

  • blood in stool
  • sometimes mucus
  • discomfort on joints mostly knees

Prednisone (I refuse to take it)

Well I diagnosed with UC (proctitis) on 2007 only symptom blood in stool, that’s it.
Never gain/lost weight, only use the bath once or twice, 3 times if I’m under lots of stress.
Sometimes I think maybe it’s not Ulcerative Colitis, but then a few more symptoms appear and I think yup is UC lol

Been going through an annoying flare up since may 2013, only blood in stool, sometimes mucus. Every now and then I get a small cramp near my belly button goes away in seconds.

As far bloating goes I dont have it often, it depends on what I eat.

At work I’m standing and/or lifting heavy things so joint discomfort (mostly knees) is becoming a problem.

(August 2013) Doc prescribed cortifoam and no more red meats to treat flare up but this time the foam didn’t help at all.

I tried probiotics, looking for a way to stop the flare up.
First one was trubiotics, it did help with the bloating/gas.

Then I tried phillips colon health, didn’t see much difference.
Lastly “Align” my best bet, but I only saw more blood (I did finish the whole box though, wasn’t going to let my 30 bucks go to waste, lol)

Had a docs appt on Jan 7th, told him whats going on.  Now I’m scheduled for another colonoscopy on Feb. 3rd, 2014.
I’ve been wanting to get one for a while now (didn’t have insurance, so cost was a big issue ), but finally I’m going to get it, not looking foward to the prep, none of us are I’m sure omg!! It’s big-o a gallon, yuck.

I’m pretty sure my meds will change.
I might get predisone but I refuse to take it because I’m sure the side effects will be really bad on me. :(

My question is:

HOW has prednisone affected your life????

——

Medications / Supplements

Sulfazalazine 500mg 3 tablets 3 times a day
Folic Acid 1mg

First “bad” mostly annoying flare up in 2011
used (2) Cortifoam- hydrocortisone acetate 10%

used (4) cortifoam again on 8-2013
didn’t help this time

written by Cynthia PM

submitted in the colitis venting area





13 Responses to “I Refuse to Take Prednisone”

  1. Tim B
    Tim B.January 28, 2014 at 7:18 am #

    My doctor put me on Budesonide to help get out of a flare and it is safe enough to be prescribed as a maintenance drug as well in low doses. It does not have any of the nasty side effects of prednisone. It is a little expensive, but after doing some research well worth it in my opinion. Good luck.

    P.S. I have my second colonoscopy this week.

    • Cynthia PM
      CynthiaFebruary 1, 2014 at 7:04 pm #

      Hi tim, thanks for you input, I will keep Budesonide in mind as an alternative.
      hope everything is well with you.

  2. Amanda H.January 28, 2014 at 12:29 pm #

    Hi Cynthia! I agree with you 100%! I also refuse to take prednisone even after my doctor has insisted I do so in the past. When I was in that situation I simply found a new doctor that was willing to work with me in other ways. And you know what?!? I went into remission and I am so much happier! I have watched a close friend of mine nearly waste away on prednisone. He experienced severe bloating and weight gain, severe mood swings, and extreme fatigue. A price too high to pay for temporary relief of symptoms. I feel the only time where I would allow myself to go on prednisone would be if my only other option were surgery. And luckily, since finding this new doctor I am no where near that place. I was able to find someone to work with me on my diet and I’m now on a SCD/Paleo type protocol…..something that’s really saved my life.

    I honestly do not understand how prednisone is even approved by the FDA. I think your feelings and fears around the drug are very valid. I also strongly believe that us with IBD need to trust our gut (pun intended) tells us even more than advice we receive from our doctors at times.

    I wish you the best of luck with everything! -Amanda

    • Cynthia PM
      CynthiaFebruary 1, 2014 at 7:14 pm #

      Hi Amanda, Thanks for your reply. If it comes down to it and if he doesnt recommend anything besides prednisone. I will do the same you did ask for a second opinion.
      Well i just need to get the 2nd colonoscoy done first. just depends how bad
      “my sewer pipes” are working lol
      this time around I’m not afraid of the procedure, I’m afraid of the results.
      hope everthing continues to be well with you

  3. Dori RJanuary 28, 2014 at 2:34 pm #

    My Dr gave me Buedesonide for 3 weeks, but doesn’t want to keep me on steroids..I have been dealing with UC since 1992. Years of remissions, and this flair has been going on since Nov 2013. Colonoscopy moved up from March 2014 to Feb 4th .

    • Cynthia PM
      CynthiaFebruary 1, 2014 at 7:17 pm #

      Hi Dori, you will be having your colonoscopy a day after me. good luck to us. :) hopefully you will go into remission soon.

  4. Isaac XuerebJanuary 28, 2014 at 3:04 pm #

    Prednisone managed to get me out of bad flares within a couple of days, and in my case didn’t have many bad side effects (I just had bigger appetite and some insomnia…but I was going through a University exam period at the time, so the stress may have factored in as well!).

    Not everyone is affected in the same way by the same meds, but if your doctor prescribed them, I think you should try see how it goes. It takes some time to find what works best for you! I suggest taking some Calcium supplements with Prednisone to help a bit your bones.

    Good luck! :)

    • Cynthia PM
      CynthiaFebruary 1, 2014 at 7:24 pm #

      Hi Isaac, you are totally right not everyone goes through the same thing with the meds, some work some dont, but so far what i have read predinisone is a nasty one. I’m sure I will one of the ‘lucky ones” who gets all the bad mood swings, weight gain etc. I can have pretty bad temper sometimes (im sure we all do) but I don’t need to add to it lol.
      but well I need the colonoscopy results first then I’ll see what works best. Im just freaking out a lil bit.
      thanks for your reply.

  5. Jake S
    Jake S.March 3, 2014 at 12:47 pm #

    Hi Cynthia,

    I absolutely HATE pred; I get every side effect for it that there is…but I’m stuck on it now (60mg) until I get surgery in a few days…just hang in there, pred is nasty but it will def. save your life in a tight situation.

    I refused it for years until there was no other choice.

    • Cynthia PM
      CynthiaMarch 4, 2014 at 6:46 pm #

      Hi Jake, thanks for your comment. Yeah before I saw your comment I thought, monday I’ll ask my doc for pred or something that will work fast, don’t want to deal with all the bleeding anymore. I Just get worried and that causes more problems.
      good luck with your surgery :) thanks again.

  6. Marq Rich
    Marq RichardsonMarch 17, 2014 at 7:25 am #

    let me get straight to the point… surgery is the only cure… im so glad i got the j-pouch.. its been 2 years since i had the pouch and i only had 1 case of pouchitis. i think we all had or have the same symptoms but if you want them to stop and you dnt want to take no more meds i suggest the surgery.. i got back to a normal life, not worrying about wheres the nearest rest room… i go 3 times a day now.. morn, noon, and night… i dnt even wake in the middle of the night that often….i disagree with all these home remedies and probiotics crap…the bottom line is flares trigger when they want, whether your on meds or not.. ppl need to understand that these remedies are not the results of their remission… i believe remission happens on its own… every med or remicade that i took , i still had flares while on these medications… it came and went as it pleased… with this disease you can loose your job ect… cant plan events… you know what i mean.. bottom line is im perfectly back normal… med free…symptom free….. no worries….im going to make this a general message for now on and post on other ppl pages as well…any questions or comments reply to this post or if you want to talk on a personal level you can give me a call any time on mon-tue………… wed,thur,fri,sat,sun b4 330pm 347-351-7694

    • bevMarch 17, 2014 at 8:16 am #

      I can totally see your point. I am of the belief also that flares trigger when they want, despite what we do to try and stay in remission. I think it’s one of those things where we are all in a sort of denial…not wanting to admit the truth…..HOWEVER, and that’s a BIG HOWEVER…natural beats the hell out of meds. The meds are dangerous and they can hurt you and destroy your life even further. Probiotics, olive oil, aloe vera, diet, etc won’t harm you.

      My bottom line is…I will try and ‘control’ UC with the natural stuff BUT I would choose surgery before I took any more of those awful meds for it!!

      False sense of security…that’s what we all live with…surgery IS THE ONLY TREU ‘CURE’.

  7. bevMarch 17, 2014 at 8:18 am #

    Surgery is the only TRUE…cure

    Sorry for the typo right when I was ending my tirade :)

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