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DO YOU KNOW WHY PRED IS PRESCRIBED?

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Ulcerative Colitis
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Posted 2/25/2012 7:48 PM (GMT -5)
I am wondering why doctors prescribe pred? I had a scope in Jan and it showed moderate to severe uc throughout my whole colon.  I have been on remicade since July of 2009 and my last scope in Jan of 2011 only showed mild inflammation on the right side of my colon.  My symptoms on remicade have been the same since I started it.  I have about 4-6 bowel movements a day with urgency.  I never really had blood or tons of mucus.  I am wondering if I am just in a flare and once I go on pred it goes away and then when I taper it stays away or is the remicade not working and I need  a new med.  I ask because isn't it normal for people to flare every now and then or are you not suppose to flare when you are on these drugs?  My theroy is if I only flare like every two and a half years and go on pred for a month or two and then can continue on the remicade and then not flare for another couple of years why not stay on it then.  Or is it that I will get worse because the remicade isn't worrying.  Also, I mean why put me on pred if as soon as I go off of it I will flare.  What is the point of being put on it if I just flare right after I go off of it.  It isn't like you can stay on pred for ever.  Why not just switch my med right away then.  Sorry for the long post with tons of questions.  I will ask the PA this when I go on Tuesday but I was just wondering if any of you have any answers.
Posted 2/26/2012 2:34 AM (GMT -5)
Typically pred kicks in right away or at least fairly quickly for most patients and aids with symptoms...it's generally used as a "booster" med until your maintenance med(s) kick in and/or as a short term relief from symptoms for severe disease activity. Together with maintenance meds it can often (for some) help patients gain a quicker remission.
Posted 2/26/2012 9:35 AM (GMT -5)
If you ask me it's because it's basic text book directions.

I've heard people having better results and less problems with taking Cortef (Hydrocortisone oral) but when I asked about it at Mayo they said there was a "dosing issue". In other words they don't trust the patient to take it in a timely manner throughout the day. Same reason why elemental diet aren't prescribed much in the US...the doctors don't think the patient are disciplined enough to stick with it.

Best approach to this is to suggest new treatments to the doctor and try to prove your dedication. I was on a liquid diet for 6 weeks....that impressed my GI. He trust his patience's judgement. You have to as this condition is very individual!
Posted 2/26/2012 10:40 AM (GMT -5)
     Hi Wimom....it's because the more often you take prednisone, the more your body needs it.  At least I found that in my case. 

     When first diagnosed, in 1998, the doctor placed me on prednisone (40 mgm with a 5 mgm taper per week) along with Asacol as my maintenance med and Rowasa enemas.  I was able to wean off the prednisone as prescribed and the Rowasa.  I enjoyed a two year remission.  I was never told to stop the Asacol OR to continue it.  I felt so well, that I stopped the Asacol after a year.  In 2000, I had my second flare, placed on Colazal as maintenance and this time TOLD to continue, prednisone with the same taper and Rowasa.  Flare lasted two months once again.  Flared in 2002, doc placed me on 6MP along with prednisone, rectal meds again.  Flared in 2003, higher and longer doses of prednisone needed. 

     You know my story after that.  Seems like I just needed more and more prednisone each time until I became dependent upon it for remission even if on Remicade.  Prednisone was killing me.  I have osteoporosis forever.  While on it, I had uncontrollable high blood pressure (on three different meds for it) and type 2 diabetes.

 

Posted 2/26/2012 11:10 AM (GMT -5)
Interesting story Christine1946. That's why I was scared to go on Pred....and I've been on it since June 2011! Just as I was getting results I get rear ended in a car accident and my symptoms came back! It's just been one thing on top of another for me. I worry that I won't be able to get off Pred now.

From my understanding this isn't the case with Hydrocortisone. I know someone who was treated with Hydrocortisone for 20 years then switched to LDN and is doing fine. Still has problem now and then but he uses Entocort as his rescue drug. As far a I know he never mentioned any side effect from the Hydrocortisone. He said it's less dangerous than Pred. He has a medical degree too. His treatment of Hydrocortisone stopped because the doctor passed away...Dr. William Mck Jefferies. Dr. Mck Jefferies was known for his research on using steroids for all sort of illnesses and wrote some books too. Seems like when he passed away all his work disappeared too. It's now hard to find a doctor who knows his protocol.
Posted 2/26/2012 11:44 AM (GMT -5)
Usually Remicade is prescribed when steroids don't work. Therefore, there shouldn't be a need or benefit of using both together??? In otherwords, either one or the other will work for you...but not both. Or, am I missing something with my logic?
Posted 2/26/2012 4:29 PM (GMT -5)
I have been on remicade since July 2009, I was on 20mg of pred during that time(while the remicade kicked in) until Nov 2009.  I have not been on pred since because my symptoms have always been the same 4-6 bowel movements a day.  With urgency when I have to go.  I can function like this.  My scope last year showed just mild inflammation on my right side(I had severe uc thoughout my whole colon) so, the remicade cleared it up.  My last scope in Jan showed moderate to severe uc thoughout my whole colon.  My symptoms were still the same as before I was havng alittle more urgency and maybe going D alittle more than usually but not much.  So, obviously the remicade isn't healing my colon anymore and my doctor told me that they will not leave me on it if my symptoms are fine but my colon is inflammed.  She said you can't leave my colon all inflammed because of the cancer risk.  But my thing was why put me on the pred because if the remicade isn't working won't my colon just get bad again as soon as I go off the pred?  I know my remicade levels are fne so it just isn't working she said.  She said at my scope that we need to talk about other med options and I don't have many left(really??? lol). I see the PA on Tuesday but not the doctor until April.  Is it possble that the pred will heal my colon and the remicade will work again because I was just in a flare?  It just seems silly to put me on a med for a couple of months and then take me off and I get bad again.  why not find one that works?
Posted 2/26/2012 5:36 PM (GMT -5)
     I hate to tell you this Wimom, but I would consult with a colorectal surgeon.  Your options are just about running out.

     My ulcerations were only confined to the rectum and stayed that way for the entire twelve years I suffered.  I have no idea why I only had luck with the prednisone but you know what it does to your system.  I was scared stiff that my Adrenal glands had shut down completely like my close friend who suffered with Crohn's for 20 yrs.  She developed Addison's Disease and passed away in 2005 at age 58.  She died from sepsis.

     You're right, if you are just responding to the prednisone, like I did while on Remicade, the Remicade isn't doing a darn thing!  We all hope that the next med will put us into remission.  That is why I gave Humira a shot after Remicade failed.  However, the infusion nurse told me that if Remicade failed, it is more than likely Humira will fail too sad .  Oh well, surgery is a scary thought and NO ONE was more scared than I.  I was in complete denial that I needed the surgery.  Suebear, from this forum, jerked me into reality.  She said my GI doctor was not my advocate.  He sure as hell wasn't.  All he wanted was for me to try more and more meds.

     I am thoroughly convinced, had I not had surgery, I would not be here today.

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