When to go on Pred?

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Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/3/2008 6:53 AM (GMT -6)   
I have been flaring for about 2 1/2 months now.
My doctor does not want to put me on pred again.  I have been having 1 flare a year for hte past 3 years.
He just switched my meds but he did not put me on pred this time.
I am going about 5-8 times a day to the bathroom. bloody mucus sometimes.  Mostly diareaa but sometimes normal.
 
YOu can read below what meds I am taking. I have been on them since October.
 
When should I start to insist I need Pred? This is the first time I have been on a flare without any meds. I did lost 13 pounds in the past 2 months but holding steady the past 2 weeks.
 
 
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/3/2008 8:04 AM (GMT -6)   
I think your GI is wise to hold off the prednisone. It should only be used for a severe flare and after the 5ASAs and rectal meds have been given a chance to work. Your flare sounds moderate and pred just isn't the right choice of drugs for a moderate flare. Pred is a drug that comes with a lot of side effects that can be long term so it's best to not resort to it. You might ask him/her about adding an immunosuppressant like 6mp or Imuran.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/3/2008 11:31 AM (GMT -6)   
He wants to add 6mp. But I really don't want to take it b/c of the side effects. Also he wanted me to start on 100mg of it which from what I read the side effects can be worse than pred at that level of 6mp. The only side effects that I have gotten from pred. was acne, increase hunger, and the swollen face.
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 12/3/2008 12:02 PM (GMT -6)   
Sure prednisone has alot of side effects but as long as your course is 3 months or shorter you don't have to worry to much. Here is my rational at least based on my history with the disease. No amount of 5ASA is going to put an end to a flare, only prednisone. Now, the longer I wait to go on prednisone the worse the flare gets which in turn means I will need a higher dose or longer course of prednisone to calm it down. So ask yourself this, do you really want to be put on immunosuppressors long term where the chance of serious illness is more likely to occur, i.e cancer, when a short course of pred can stop the flare? I personally am way more afraid of going on an immunosuppressor for long periods of time than taking short courses of prednisone once a year when a flare hits.
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/3/2008 3:59 PM (GMT -6)   
When I was on 6mp in the late 1990s there was not much known about the drug or the side effects. I took it anyway because I was desperate to gain remission. It has since been proven to be a very benign drug at the dosages we take it at. However, that is not true with prednisone. Prednisone, even at low doses for short periods of time, can have life long detrimental side effects with bone loss and damage to joints. I took prednsione in varying dosages for 2.5 years. It was a drug that helped me maintain my health while I waited for the 6mp to kick in (it never did). I took the prednisone because again, I was desperate. I came out of the pred years (it's been over 7 years since my last dose) with no long term damage but I know that was just probably luck with a bit of preventative measure thrown in.

I do think GIs that don't prescribe pred for moderate flares should be commended.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


crazytrain411
Regular Member


Date Joined Nov 2008
Total Posts : 109
   Posted 12/4/2008 11:07 AM (GMT -6)   
Mrsarcasm what is your diet like, have you made any links as to when the flares start? Are you still taking the vsl3 ds? Seems like it has no effect for you, sorry to hear you have such trouble.
Waiting to see if I'm cured - no symptoms since probiotics started

Probiotics 16 strains (vsl#3 + Natural Factors ultimate multi probiotic + Trophic Acidophilus Plus) - 475 billion per day. Pre-biotics 1x a day. No sugar.
L-glutamine, elm powder, vit b & folic acid, 5 g vitamin C, vit D, vit E, Calcium+Magnesium


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 12/4/2008 12:57 PM (GMT -6)   
My experience agrees with kickboxer's. If the flare is not severe, and it sounds like yours isn't, a short course of pred at a moderate dose and tapering quickly could be just what you need. As I said in the other pred thread, side effects are less likely when taken this way and any mild effects you experience will be reversible.

I also worried more about being on a powerful immunosuppresant long-term. One of my docs, back in the beginning when I was flaring terribly, put me on 6mp against my better judgment. After three months, there was no noticeable improvement in my condition, yet my hair was falling out and my nails were growing odd horizontal ridges. I got off it and have maintained long-term remission without going that route.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/4/2008 6:41 PM (GMT -6)   
i have been vsl #3 for 3 weeks. During that time I had a sinus infection where I took anti biotics.

It looks like the colazal just started to work. I only went to the bathroom 3 times yesterday and today 4 (so far). Not normal stuff but frequency and urge is way down.
I noticed this happended when I intorduced OMega 3 into my diet and 2 teaspoons of Honey a day. It also happened to be 8 weeks since I started taking colazal.

Its been odd of the switch in the amount of time me going to the bathroom.
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


crazytrain411
Regular Member


Date Joined Nov 2008
Total Posts : 109
   Posted 12/4/2008 9:52 PM (GMT -6)   
Mrsarcasm, just wanted to tell you vsl#3 or any other probiotic might be ineffective when you take anti-biotic, and it might take much longer than 3 weeks for them to work.
Waiting to see if I'm cured - no symptoms since probiotics started

Probiotics 16 strains (vsl#3 + Natural Factors ultimate multi probiotic + Trophic Acidophilus Plus) - 475 billion per day. Pre-biotics 1x a day. No sugar.
L-glutamine, elm powder, vit b & folic acid, 5 g vitamin C, vit D, vit E, Calcium+Magnesium


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 12/4/2008 10:21 PM (GMT -6)   
Crazytrain -

Not all probiotics are ineffective when taking antibiotics. If there is a doubt, check their website, or if they don't have one, read the info that comes with it. VSL#3 recommend that you wait a few hours after taking your antibiotics before taking the VSL. Another probiotic I've taken, Florastor (which is a yeast), is not affected by antibiotics at all, so it is recommended to take at the same time.
Brandon
 
36 y.o. male
Diagnosed w/ UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone (2.5mg/day, back up to 7.5mg), flaxseed oil, L-glutamine, magnesium, and vit B-12.
 
Tried the spinach/sunflower diet.  Saw some relief in symptoms after 1 month, but symptoms returned with the taper off prednisone.
Next up - experimental and trial drugs.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 12/5/2008 4:57 PM (GMT -6)   
     Have you tried Rowasa or Cort enemas?  I would try the probiotics too.  My GI doctor put me on probiotics, as did my nutritionist.
     Prednisone helps me kick start remission but it also left me with osteoporosis.
 
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/5/2008 5:38 PM (GMT -6)   
I am on Rowasa and vsl#3 DS. I had issues keeping the rowasa in up until this week.
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 12/5/2008 5:42 PM (GMT -6)   
     The enemas were difficult for me to keep in too.  That is why one of the GI doctors in the hospital suggested Canasa suppositories.  They helped somewhat but the ememas are able to treat the UC further into the rectal area which is where my UC is located.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 12/6/2008 1:59 AM (GMT -6)   
kickboxer said...
Sure prednisone has alot of side effects but as long as your course is 3 months or shorter you don't have to worry to much. Here is my rational at least based on my history with the disease. No amount of 5ASA is going to put an end to a flare, only prednisone. Now, the longer I wait to go on prednisone the worse the flare gets which in turn means I will need a higher dose or longer course of prednisone to calm it down. So ask yourself this, do you really want to be put on immunosuppressors long term where the chance of serious illness is more likely to occur, i.e cancer, when a short course of pred can stop the flare? I personally am way more afraid of going on an immunosuppressor for long periods of time than taking short courses of prednisone once a year when a flare hits.

gee...i've never been on pred and am hardcore 5ASA, oral and rectal for almost 20 years.  Using the enemas for 4 months straight nightly once before being able to taper during one flare was trying, but persistence paid off.  It does, however take the commitment and the eventual learning of how to taper and increase when needed.
 
q
 
 
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 12/6/2008 2:03 AM (GMT -6)   
Mrsarcasm....where in the colon is your UC..limited or throughout?

I have at least one flare a year...although mine are considerably minor compared to the first 4 years.

Since your flare started and you were on the Rowasa, has it improved at all? Were you put on the Colazal and the Rowasa at the same time?

Why were you switched from Asacol?

Are you bleeding at all?

Has your doctor taken stool samples to rule out any gastro bugs?

I suggest you continue the Rowasa unless your symptoms are not improving at all.

Some patients seem to have diarrhea from the Colazal...but I wouldn't think it would be 8 times daily.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/6/2008 6:58 AM (GMT -6)   
Quincy....

UC is in my left side (moderate) & Middle (mild)

My flares usually start when I miss taking rowasa. Except this time that was not the case

Asacol just stopped working even after I was put on the max dose.
I used to find asacol pills in the toliet.

Colazal breaks up faster and so far so good.

I was bleeding. So far 4 days with no blood.

I have not done stool samples. I do have a script to do it. But its a little hard to do during hte week.

The diarea is mixed. Mostly in the AM and as the day goes on it gets mixed. BUt the frequency has gotten better over the past week. Its about the 2 month period that I have been on the colazal
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily

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