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Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 2/28/2009 9:37 AM (GMT -6)   
I was just curious how long other GI's try asacol and rowasa before moving on to other options.  I started rowasa and asacol on 2/13/09.  GI is already talking prednisone, which I will probably refuse.  How long is an honest time frame to try the current treatment.  It seems like it should be longer than just 6 weeks (go back on the 18th). 
 
Also, is there anyone here that has refused prednisone?  I was on it for 10 days at the beginning of the year and it was horrid.  I don't think I could function on a daily basis if I was on this drug for an extended period of time.  And if I was I would probably be divorced at the end.  Is there any other options besides prednisone??
Diagnosed Friday, February 13, 2009
Asacol 2 tabs 3X daily
Rowasa Nightly


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/28/2009 11:01 AM (GMT -6)   
Well I didn't exactly refuse pred but it more or less my GI that refused it. Not that I would of brought the option of me being on pred to him! He is very reserved with his steroid prescriptions and only uses it as a last resort when nothing else is working. But even then he didn't prescribe it to me but the steroid enemas instead.

As for how long, well that depends - if you are slowly improving then it can take a while to get the symptoms under control. So basically I would say 2-3 months (possibly longer) on rectal meds (Rowasa or Canasa) with improvement. But with no improvement at all, then about a month or less. Usually if the 5-ASA rectal meds don't do the trick, the doctor may try rectal steroid enemas/suppositories/foam in addition to the oral 5-ASA medication.

When I was on Rowasa and I had improvement (meaning no symptoms), the doc would wean me off Rowasa around the 6-8 week mark.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/28/2009 11:02 AM (GMT -6)   
Forgot to mention too that some GI's use the rectal 5-ASA meds as a maintenance medication too in addition to the oral.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/28/2009 12:18 PM (GMT -6)   

Yes, what red said!  I would give about anything if I could have stayed on the mesalamines and enemas, etc.  I cannot tolerate them - made me sicker every day after about a week.  I really had to move on to prednisone - something I said I would never do.  Now starting 6 MP today - these are much "tougher" medications but I really did not have any choice.  I was starting to see improvement on Colazal and Lialda after a week but kept getting sicker - flulike symptoms and nearly had to stay in bed so had to quit them all.  Give them as long as you can especially if you are seeing even small improvements.  It is worth it!  I had a colonoscopy in June, 2008 and again in November, 2008 showing improvement but had to quit the mesalamines and was using only hyrdocortisone enemas and last month a sigmoid showed the UC moving up the left side again.  So - prednisone and 6 MP now!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/28/2009 7:09 PM (GMT -6)   
     Prednisone is my miracle drug.  When in a flare it is the only drug that helps me achieve remission.  I'm on Colazal and 6MP for maintenance.  Going for my 3 month visit to the GI doctor on March 18th.  I have to tell him I cut the 6MP down to 50 mgm alternate days with 25 mgm.  75 mgm was way too high.  My white count was down to 2.4.  Maybe I will ask him if I can stop the meds altogether and see if just the probiotic will do the trick.
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.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/28/2009 7:33 PM (GMT -6)   

Christine - I feel that way about prednisone right now also.  I think at 68 I have to do what keeps me going from day to day. Have traveling to do, places to go, things to do!

 I have been flaring since diagnosis last June!  YIKES!  Finally - four days of prednisone and no blood.  A few other signs of UC but rarely.  I feel good - etc. etc. Rarely have urgency, and have not taken Imodium or Pepto for three weeks.  Today started the 6 MP.  Feel a little "out of sorts" but no pain, nothing bad YET!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/1/2009 1:30 AM (GMT -6)   
Yes. I didn't see my GI for my third flare, because I knew he would prescribe Prednisone. I gradually improved by eating only anti-inflammatory foods and putting probiotics mixed with warm water up my butt after having diarrhea. And then there is fecal transplantation. I would have done fecal transplantation again if the probiotics and diet hadn't helped.

I don't think I will ever take Prednisone again. Prednisone is a temporary fix for a long-term condition. Prednisone does not strengthen the colon. In fact, it does the opposite. It ages the body.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/1/2009 10:23 AM (GMT -6)   

For now planning on continuing what is working.  I have not changed my diet much - mostly to treat my IBS.  I feel great so far.  Only second day on 6MP.  Prednisone was my LAST choice but I ran out of other choices of medication.  I have been on 20 mg. for over a week and no symptoms have returned.  You have to remember I am 68 - some 20 to 30 years older than most of you.  I plan to have a lot of life left but long term effects don't bother me.  I already have bad arthritis in my knees and need replacement.  I also have a corneal disease so deal with bad vision at times. 

AND - my husband has Stage 4 lung cancer and went through tough treatmenst - radiation and chemo - and has been in remission for 9 months.  Two years ago givin about 9 to 12 months to live WITHOUT treatment.  He KNOWS it was worth it and chemo was rough on him and his body but he feels pretty good at 73 and I would not be surprised if he lives beyond 83.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16710
   Posted 3/2/2009 9:31 AM (GMT -6)   
You could see about increasing your Asacol dosage. I take 3 400mg pills 3x a day. I have seen people who take 4 pills 3x a day. I use rectal suppositories but some people do better with enemas and such. You should give yourself some time and try different things. I think it requires a bit of trial and error. I hope you find a combination that helps you.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 3/2/2009 10:49 AM (GMT -6)   
My GI never took me off asacol. We were never sure if it was helping me any but I think he was keeping me on it for the occasion of getting into remission and using it as maintenance (which I am now)

I will NEVER take pred again. I was 16 the first time I took it and I felt awful on it and it didn't work. I'm too young to have to deal with it and my GI agreed we'll never go that route again.

There are many other options and you should discuss it with your GI. It is for sure trial and error.
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"Life is what happens when you are busy making other plans"
John Lennon


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/2/2009 11:46 AM (GMT -6)   

Sam- I agree about prednisone for you now but NEVER AGAIN I am not sure of.  Since I am 62 and said "never prednisone" I am on it and feeling great.  I HOPE strongly that you don't have to consider it even but you have to keep an open mind about trying anything - unless you are severely allergic and know it.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 3/2/2009 12:12 PM (GMT -6)   
I'm just not putting my body through it again. Period. Its just a personal decision. I tried it before and it did nothing for me but make me feel awful. I kept an open mind about it the first time and it did exactly what I expect it to do.
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"Life is what happens when you are busy making other plans"
John Lennon


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/2/2009 12:18 PM (GMT -6)   

Absolutely, Sam - if it did nothing - I would not try it either.  That is the way the mesalamines - enemas, Lialda, Colazal, etc. did for me and I said "NEVER AGAIN". Hey - you are very young and have a long life to protect ahead of you.  Do what you feel it best for you and your body - no one knows it like you do!!  Maybe when you are my age they will have "cured" UC without surgery, etc. I sure hope so!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30972
   Posted 3/3/2009 5:48 PM (GMT -6)   
Oh my...your doc should give you at least 3 - 6 months with oral and rectal 5ASA...and if you're not improving at all and getting worse, then maybe consider something else.....

You could up the asacol to 4 twice daily....

You have some control, but you're not even in the rectal med realm for a month yet.

When I saw another doctor in place of mine during the first year...he said that if I was his patient, he wouldn't waste the time with the 5ASA meds and would have put me on pred first thing. I said to him that I was relieved he wasn't my doctor.

When I mentioned that to my doctor when he got back, he just smiled and chuckled. Many doctors don't get the concept of patience and do think the hurry up tact is best for the patient.

I can only speak from 20 years of experience with hardcore 5ASA meds....you do need patience. I was in tears a lot the first year, sick of patience, but my doc reassured me because I was "improving". I did try to get off the meds the first 2 years with tapering off as the goal...no go. After he gave me the freedom to use the enemas earlier (than waiting to see him), I improved even more.

5ASA is a perfect match for me....some cannot take them at all (kops and others).
There were times I did ask my doc if steroid enemas should be considered and he just said that I'm still improving...so that's where it stays.

If it's any consolation, I'm still not perfect from my flare at Christmas and am going back to nightly enemas as of tonight. Lots has been going on with me emotionally, and I tapered way too fast...today isn't a good day, so I'm just going back to square one. I'm also in a BPPV (positional vertigo) attack adding to my p-o'd state of mind.


hang tough....it's still worth it if you give it a fair chance and don't get too desperate. You could suggest the steroid enemas ... foam ...maybe to try in the morning, in conjunction with the Rowasa.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/3/2009 6:03 PM (GMT -6)   

Once again quincy is so right.  She knews I can't take mesalamines (BAD side effects) and I tried them until I could not get out of bed.  IF I could have taken them with even slight improvement I would still be on them.  In fact the two I gave up quickly immediately put me in worse bleeding, etc. right away when I stopped so I know they were "working".

My stupid body works in reverse a lot - what bothers others is fine with me, etc.  I can see prednisone in my future forever - because my choices are so limited.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 3/3/2009 6:31 PM (GMT -6)   
6 is maintenance for me. when I flare I always have to bump up to at least 9 asacol a day. But it has been 6 years and works luckily, because I cant take pred. I also use canassa suppositories when flaring.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

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