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Posted 10/12/2012 9:07 PM (GMT -5)
This is the third week I've been on Entocort ((mg. pd) and Asacol (800HD 6 pd.) Unfortunately they don't seem to be working as this continuing flare up isn't getting any better. Going to GI next week to request another med. I suspect he will prescribe something else but I don't want pred. Any suggestions as to what I could mention in the way of meds and see if it meets with his OK? At this point I'm not all that concerned with long term effects because I want to feel good today. I'll worry about later years when they are here. confused
Posted 10/12/2012 9:38 PM (GMT -5)
Not to discredit your feelings on prednisone, but I was in your same boat and pred will help if you have never used it, very quickly The side effects are a concern but using it once isn't that risky so far in my experience and I have been on and off of it for three years(not the best). I get your apprehension but one time use might be what you need to get in remission. Just a thought, others might not agree
Posted 10/13/2012 12:29 AM (GMT -5)
You could try an immunosupressant but I think a quick course of prednisone may be the option he offers. I have heard that many don't respond that quickly (or at all) to entocort - prednisone is the preferred steroid treatment for UC. It is unfortunate because entocort is so much better as far as side effects go. If you need faster relief, a biologic is probably going to give you faster relief but it's not guaranteed it will help you quickly or at all. There are no guarantees. Are you using rectal meds? YOu may consider Rowasa or steroid enemas.
Posted 10/13/2012 6:35 AM (GMT -5)
valleyguy,

Welcome to the forum.

Prednisone never helped me, and neither did any of the other meds.

However, I was able to achieve remission through a combination of: diet modification, adding certain supplements like L-glutamine amino acid, slippery elm powder, and lots of probiotics, as well as LDN, low dose naltrexone.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

 

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 10/13/2012 7:42 AM (GMT -5)
Other than the 5 asa's all of the meds can have short term and long term consequences. After the 5 asa's most doctors go to pred and then Imuran. My doctor has never even mentioned pred and told me the next step he would do would be Imuran. MY condition is not bad enough to warrant the side effects of any of these meds.
Posted 10/13/2012 1:26 PM (GMT -5)
valleyguy....so, what's your take on rectal meds? would you consider them?

q
Posted 10/13/2012 10:55 PM (GMT -5)
Endocort needs a bit longer to work per my experience..I think it was 3 months.
Posted 10/14/2012 2:45 PM (GMT -5)
I certainly would consider rectal meds but it is my understanding they must be retained in the system for a period of time. Last year I took mesalamine enemas but to derive any benefit it must have been kept in the system for 6-8 hours. Anything less would be pointless. Unfortunately when one is in the midst of a flareup, visits to the bathroom could average once every two hours so it appears under these circumstances rectal meds may well be useless. That is unless anyone is aware of meds that do not require such a long period of retention. If hours are needed for maximum benefit, wouldn't this be best fpr someone in remission & used for maintenance purposes?

Just asking because I'm not all that familiar with that type of treatment.
Posted 10/14/2012 10:22 PM (GMT -5)
how many days of intentional bowel rest have you tried ?
Posted 10/15/2012 2:19 AM (GMT -5)
gee, don't know who gave you that false info valleyguy...hopefully it wasn't your GI.

How long were you on the enemas and how long did you hold them?

q
Posted 10/15/2012 7:36 AM (GMT -5)
No, you don't at all have to retain them for 6-8 hours to get any benefit. You'll of course get more beneift the longer you retain it, but even an hour gives some benefit. When I started them, I was having 15+ BMs a day, with at least 2-3 overnight. So no, there's no way I was holding them for 6-8 hours. And they made a HUGE difference right away.

They are great for maintaining remission, but they're also great for treating flares.
Posted 10/15/2012 11:04 AM (GMT -5)
good point fruit - yup, anything close to 2 hrs is beneficial -
Posted 10/17/2012 1:34 PM (GMT -5)
Well, I saw my GI today and he suggested I continue with Entecort, although name brand rather than generic. Not sure the difference but he wants to try it for a week. Otherwise, and have some here stated here, I will go on pred. for a period of time starting with 40mg for one week and subsequently reducing dosage. Although I wanted to avoid this there does come a time when you realize the benefits may well supersede the side effects if in fact side effects do appear. This flare is starting to affect me other than physically so any avenue I can use will be used. When these flares reach a point one almost looks forward to the pred. for relief. To be continued..........
Posted 10/18/2012 2:13 AM (GMT -5)
and what about the rectal meds..?

q
Posted 10/18/2012 11:35 AM (GMT -5)
I did ask about rectal meds and was told the position of the uc was such that rectal meds would not reach. In other words it was too high for rectal meds to afford any relief.
Posted 10/18/2012 12:14 PM (GMT -5)
And that's just NOT TRUE.  No, rectal meds won't reach the whole colon so therefore won't treat the whole colon.  But they will reach, and do an EXCELLENT JOB OF TREATING the recum and lower portion of the colon, which is what the oral meds don't do a good job of treating. I was diagnosed with pancolits, and my GI started me on mesalamine enemas after I'd been on Asacol for about 10 days, with very minimal improvement.  As soon as I started the enemas, I had a HUGE improvement.

I don't know why so many GIs say this.  It's all about using BOTH oral and rectal meds TOGETHER.  It would absolutely be stupid to only use rectal meds to treat pancolitis. 

Here's a good research study showing the effectiveness of using oral and rectal meds with panolitis:

www.ncbi.nlm.nih.gov/pmc/articles/PMC1774619/pdf/gut05400960.pdf

And here's a thread I started a while back that explains it a bit:

https://www.healingwell.com/community/default.aspx?f=38&m=2398194

Posted 10/18/2012 8:47 PM (GMT -5)
I do have a supply of mesalamine enemas so perhaps I can try them for a short time. Along with my current oral meds I don't foresee anything detrimental in using them for a short time and study the results. Also what exactly is intentional bowel rest?
Posted 10/19/2012 8:11 AM (GMT -5)
If you have them, then yes, I'd use them.
Posted 10/19/2012 12:51 PM (GMT -5)
I'm puzzled....you said before your doc never mentioned mesalamine enemas. ANd you have them? what's with that?

q
Posted 10/19/2012 1:39 PM (GMT -5)
Simple explanation. Last year my previous dr. gave me a supply through prescription and shortly thereafter was told to discontinue as remission seemed at hand. When a flare-up began sometime later I changed drs.

My new dr. has not yet approved rectal meds so my thoughts were to give them a "test run" because I've been impressed with many of the results I've read from this group and monitor the results.
I've also discontinued Entocort today and starting pred. At this point any possible side effects are secondary to a possible remission. Let's hope.
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