Next step???

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.

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

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

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

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.

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.

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

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.