Need advise on next steps

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Trixy's Got Butt Trouble
Regular Member


Date Joined Jun 2007
Total Posts : 356
   Posted 12/3/2007 10:26 AM (GMT -7)   
Long story short....GI said next time I'm in a flare, he'll have to put me on Prednisone and start 6MP.  Well, I'm in a flare since 11/2/07 - pretty minor flare, but still.  It won't go away, have been doing 2 Rowasa a day, started again today with bright red blood. I'm still having liquid poo with some pieces and mucus, but only going 3-5 times a day.  I have very little cramps if any on some days.  I know the Prednisone will knock it out ASAP, but don't want to tell GI b/c I don't want to start 6MP.  I want to try to conceive next year.
 
I need to be armed with info when I call my GI b/c I do not want this flare over Christmas when we travel.  I already take 12 Asacol a day. 
 
Can I propose to my GI the following and do you think this will help get me in remission:
 
Stick with my 12 Asacol a Day....
Switch from Rowasa to a steriod enema (do they still make one?  What is the name?)
Once I'm in the clear, switch back to nightly Rowasa
 
I want to avoid taking Prednisone and 6MP.  Thanks for any tips....
Best Wishes,
Trixy (39)
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day;
1 Rowasa at night during flare/1 a week during remission;
Nexium; Probiotic; Multi-Vitamin; Flax Seed Oil
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status:  11/2/07 Ending 5 month remission w/mini-flare :-(


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/3/2007 11:16 AM (GMT -7)   
Hi Trixy,

The only question I can really help answer is w/the steriod e's. I am taking a generic they are just called hydrocortisone e's and I think that those helped me more than the prednisone, it took a couple of weeks before I really got good results from them.

Sorry you are having so much trouble right now, I wish you the best!
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 12/3/2007 11:34 AM (GMT -7)   
The steroid enemas are Cortenema (hydrocortisone) or Entocort (budesonide), which is supposed to have less of a systemic effect.  You could also ask for a script for Cortifoam (10% steroid rectal foam), which is known to speed healing in the rectum. It's very convenient to travel with; comes in a small neat package. Good luck & sorry to hear that the flare is still plaguing you. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 12/3/2007 11:55 AM (GMT -7)   
Actually, I had a doctor tell me that 6MP was not dangerous for pregnant women. But I'm with you on this -- why take a serious med if you're trying to get pregnant. It seems like it's not a great idea even if the studies say it's ok.

When did your doctor say the thing about Pred and 6MP? Had you been having a lot of flares? Your signature says that you were 5 months flare-free before this. I'm not sure that there's evidence that the asacol isn't working entirely. Personally, I'd be happy with a drug that can keep me feeling decent for 2/3 of the year. But heck, maybe I aim too low.

Even with the 6MP, you might have flares. (As I do) So that isn't a guaranteed flare-free life anyway. That's why I was thinking that if you can already keep things mostly under control with what you're taking now, that seems ok.

The steroid enemas and steroid foam would be far preferable to Prednisone. I would definitely try that before Pred.

In fact, if you find that the steroid enemas work, you could always have some around. Then, at the first sign of flare you could use them to keep the flare from getting worse. That was supposed to be my plan but somehow I didn't quite get it right this time. You could talk to your doctor about it, but my guess is that you could use them periodically without major problems. I don't know about the pregnancy issue though.

Good luck. I'm curious to hear what your doctor says. Let us know.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/3/2007 12:09 PM (GMT -7)   
Have you ever tried any ASA meds besides Asacol? Some folks have problems with Asacol, but do better on one of the other forms. It may be worth experimenting, if you haven't.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 12/3/2007 12:48 PM (GMT -7)   
A good point from Princesa.

For example, I tried every available 5ASA drug before my doctor gave me the 6MP talk. By then I was definitely happy to try it knowing that I'd exhausted other options.

If you haven't tried Colazal or any of the other 5ASA drugs, I would inquire about those with your doctor. There are reasons why one ASA drug might work when another wouldn't -- depending on where your inflammation is and where the drug is released in the system.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Trixy's Got Butt Trouble
Regular Member


Date Joined Jun 2007
Total Posts : 356
   Posted 12/3/2007 12:57 PM (GMT -7)   
Thanks for the replies and suggestions. I now have something to discuss with my GI. To answer your questions....

Julee70 - Doc told me this last year when he put me on Pred and again when I went and saw him in August for a check-up. I have had to take Prednisone every year for the last 4 years consitently. Each course was 6 or 8 weeks long and he doesn't want to keep having me go on it even if I am on it only once a year. [shrug]. The last time I had to go on Pred was last year this time for 8 weeks. I got a mini flare back in May, but was able to clear it up quickly. I know the only reason why it cleared up so quickly was b/c I had to take a 3 day course of Prednisone for some inflammation I had on my leg from a bug bite (it was bad). I continued with my Rowasa for another month or so and stayed in remission until Nov. 2.

Princesa - I went for a 2nd opinion years back and he switched me to Colozal. That was the first time I had to get hospitalized for my UC. Went back to my original GI and he switched me back Asacol and all was well.

How do you know when the Asacol is not working anymore?
Best Wishes,
Trixy (39)
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day;
1 Rowasa at night during flare/1 a week during remission;
Nexium; Probiotic; Multi-Vitamin; Flax Seed Oil
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status:  11/2/07 Ending 5 month remission w/mini-flare :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 12/3/2007 2:01 PM (GMT -7)   
Seems you might be taking too much 5ASA? I think the switch to another 5ASA such as Pentasa or Colazal might be worth trying.

You can do a steroid enema in the morning (foam would be better to retain) and maybe the Rowasa at night to see if one less will lessen your symtpoms.

How long ago were you on the ASacol and the Rowasa nightly/twice daily?

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/3/2007 4:19 PM (GMT -7)   
Trixy's Got Butt Trouble said...

How do you know when the Asacol is not working anymore?

I just know that it never seemed to help me. After reading an article about the benefits of the older drug, azulfadine, and the experiences of other folks who'd felt worse while on Asacol, I switched over and began to improve. From what you say, Asacol didn't cause problems for you - increased D, etc. - and you've tried one other form and had problems, so maybe a switch isn't what you need.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

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