How Long is ok to wait?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

badguts2009
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/7/2009 12:58 PM (GMT -6)   
So I have never been officially diagnosed with UC, but Family history and past experience tells me that that is what I am dealing with. I have been flaring for about 2 weeks now (random blood, 5-10 BM a day). I went to my General Practice doc and got on Lialda (asacol would not dissolve in me in the past) and Prednisone 40 down to 10. Lialda 2.4 mg for about a week, 2 days at 40mg pred, 2 days at 30mg, currently 1 day at 20 mg.

The treatment does not seem to be doing anything for me. seemed to work for 2 days, but now everything is back to being "crappy" :-)

My question is I have an appointment with a GI doc in 13 days.... Is that too long to wait? Is there anything I can do to make it through the next 2 weeks? I'm down to eating bananas, toast, crackers, jello, soup and even that doesn't seem to be helping.

I'm going crazy here!

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/7/2009 1:14 PM (GMT -6)   
Call the GIs office and ask to be worked in earlier if there's a cancellation.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/7/2009 1:16 PM (GMT -6)   
From your post, you've mentioned doing prednisone as: 40mg for 2 days, 30mg for 1 day, 20mg for 1 day.

I feel that that is a very fast taper and you should re-confirm with your doctor that you're doing this right. Prednisone is an extremely strong drug, and from what I have learned, once you're on it, you shouldn't taper off it too fast. Also, if a doctor should advice to you take pred then they should be more responsible in monitoring your symptoms and how you taper off it.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 7/7/2009 1:17 PM (GMT -6)   
Definitely give the office a call...for patients who are in a mode such as you are...you may be able to get in or squeezed in.

Have you had a c-scope to determine the extent of your inflammation....does it include the rectum?

Welcome to the forum.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


badguts2009
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/7/2009 1:23 PM (GMT -6)   
my taper is 40 for 2 days, 30 for 2 days, 20 for 2 days, 10 for 2 days.

I am on day 5 (so 40, 40, 30,30, 20 today)

I had a c-Scope in 2005 and they said it was Iscemic (sp?) colitus, which as I understand is kind of a 1 time deal. they put me on a low fiber diet for a couple weeks and it cleared up. This is the first time since then that I have had such a long spell of D, usually a day or two and some imodium and I am good to go, but this time it is lasting weeks.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/7/2009 1:26 PM (GMT -6)   
Yeah, that's a prednisone regimen for poison ivy or something, not for something like UC. You ought to expect to stay on one dosage level for a week or more, and not taper at all until you see improvement.
Try to get in sooner if you can! Good luck
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/7/2009 1:31 PM (GMT -6)   
And that might probably explain why you felt better for only 2 days (when you were on 40mg/30mg).
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


badguts2009
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/7/2009 1:32 PM (GMT -6)   
awesome... :-S got to love gen practice docs!

I just called and got put on the cancellation list. hopefully something will open up soon!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 7/7/2009 7:38 PM (GMT 0)   
I'm actually impressed....and you should be thankful, that the doc only put you on a quick taper.

Ischemic colitis...hmm, it may have come with UC or something else. I don't believe it's a one-time deal, however..will have to do the research on it.

Have you had multiple stool tests, blood tests, etc done to help determine if anything else is going on?

Please get a better diagnosis before accepting to go on pred again......my thoughts on it..and this is only me...that it can set one up for other med failure regarding 5ASA....

You need a diagnosis, do the homework and make a list of questions regarding gettig a proper decision as to what's going on.

Keep us posted.
quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/7/2009 2:05 PM (GMT -6)   
Quincy, I normally agree with your very thoughtful advice, but this pred taper is not good. If it was impressive then badguts2009 would not be wondering what to do next, and he wouldn't feel good for only 2 days, and then get back to having symptoms.

I feel that prednisone is a drug best avoided, but if you're advised to take such a powerful drug then the doctor must offer better guidance, with tapering instructions that would differ depending on how your symptoms change, and not on a fixed tapering schedule that does not take into account how your symptoms have changed.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/7/2009 3:42 PM (GMT -6)   
right.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/7/2009 3:55 PM (GMT -6)   
It sounds like he got a Solumed pack which would probably be the first thing a GP scripts even though it's probably ineffective to remit uc.  I can't speak for Quincy, but I would have to agree that getting a better diagnosis and, perhaps, getting the uc under control with the right combination of ASAs is a better tact for remitting the uc and, possibly, avoiding the pred altogether.
 
In my mind, the worse thing the GP could do now is script for a long taper of pred.
 
-- Sorry, changed GI to GP.  All these letters.

Post Edited (seconder) : 7/7/2009 3:55:17 PM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/7/2009 4:06 PM (GMT -6)   
In an HMO world the GP should have directly phoned the GI and gotten advice as to prescriptions. It's too bad you were left with your GP to figure out your medication. I agree with calling the GI and asking for a cancellation. If that doesn't work and your symptoms get worse in the next 13 days be sure to call the GIs office and explain your deterioration.

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


badguts2009
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/7/2009 9:18 PM (GMT -6)   
Thanks for all your input.  I called and got put on the cancellation list with my GI doc, so hopefully something will open up. 
 
I also called my GP and asked about the prednisone to see if she felt it would be better to take the 40mg longer.  of course they called back when I was away from my phone, so I'll have to return their call tomorrow. 
 
Feeling better tonight, so hopefully this thing will pass!  Thanks for all you suggestions, I appreciate it.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 10:04 PM (GMT -6)
There are a total of 3,004,492 posts in 329,146 threads.
View Active Threads


Who's Online
This forum has 161740 registered members. Please welcome our newest member, Liz in Colorado.
189 Guest(s), 7 Registered Member(s) are currently online.  Details
DBwithUC, swimmer2, MG0351, Serenity Now, ASAdvocate, Indigo69, AZ Guy