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Ulcerative Colitis
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Posted 7/28/2011 6:22 PM (GMT 0)
Does anyone else ever wonder what is keeping their UC at bay? I am taking 6mp right now but it's never worked that well for me because I can't get into the theraputic range without toxicity to my liver. At my current dose, I don't get much benefit according to the lab work and my liver doesn't like it.

Asacol did absolutely nothing to control my last flare up. I was on Asacol when the flare began and I am not sure it's effective for me at all anymore. I tried Colazal and I had increased D. I also tried Lialda without seeing any more benefit than Asacol.

Rectal meds seem helpful but they have never been strong enough to pull me out of a moderate flare up.

I would like to cut down on medications but I am petrified that things will get worse. I am just starting to feel better since this last blip I experienced, I am in no position to change anything right now but I am wondering what I could cut back on when I feel 100% in remission (if I ever feel that way)? I was thinking about decreasing Asacol to 6 pills a day. Is that unrealistic? How about stopping 6mp? I don't feel like I have any proof that it's doing anything for me and I hate to supress my immune system for nothing. I do worry that it may be the key in keeping me from flaring but what if it's not and I am taking it for nothing?

Posted 7/28/2011 6:54 PM (GMT 0)
When you're feeling better you can definitely lower your Asacol. It's a gamble to stop 6MP; your remission might only be due to the 6MP. It's hard to say. Talk with your GI.

Sue
Posted 7/28/2011 7:00 PM (GMT 0)
Where are you on the therapeutic range? If you are on the low end, like I am, you may still be seeing some benefit from the 6mp even if it doesn't seem like it. As you know, I can't metabolize it right either but I know if I stop it, it would actually send me spiraling down. The same can be said for the Asacol. I have some issues with the Colazal so I decided to stop it for a week and see what happens (this was last year). Two weeks later I was hospitalized with my whole colon inflamed. So it's possible that even tho these meds don't seem to be doing much, perhaps they are still keeping the inflammation down to a dull roar.
Posted 7/28/2011 7:00 PM (GMT 0)
I know it's scary to stop taking pills when you're not sure if they are the reason you are in remission. For me it was easier because no pills ever gave me improvement even though various pills were prescribed over the years.

I stopped 6mp on my own advice because of bad side effects (dizziness, fatigue, maybe bruising) and no improvement in UC, my doctor didn't give me any trouble about it after I told her, just prescribed something else. Nothing bad happened and I felt better aside from status quo UC symptoms.

I stayed on Asacol far too long because I was in denial that I wasn't improving, also life was extremely busy and it was easier not to face UC reality. I wanted to be better so pretended I was. Pretty sure I got tinnitus because of Asacol.

I think there are people like me that just do not get any relief from current Rx meds. I still take Balsalazide 750 mg. because there are no side effects. I know for sure it wasn't helping me because I was facing my next doctors appointment and discussing biologicals next. That's why I made one last attempt at diet modification, because I had no med choices left that were acceptable to me.

My meds are affordable even though I pay for them 100% and it's an "ain't broke don't fix it" decision.
But I've had the same discussion you are having with myself. And wonder whether there's a chance I'd be better not taking Balsalazide. Someday soon I might try that, I'll let you know.
Posted 7/28/2011 7:02 PM (GMT 0)
I will be eager to hear answers also. I've been on Asacol since.... 1991...? and I think I've had 2 flares a year ever since. Maybe they've been lesser because of the Asacol - I've not had to be hospitalized since 1986.

3x a day VSL#3DS seems to be helping me a lot....... but I am wondering about trying one of the other 5-ASAs. I told my "new" GI when I started with him 2 years ago that I'd like to try a variety of those before going to the 6-MPs, and he accepted that.

I have to say, I'm doing better right now than I have in more than a year, despite having to take large doses (4, 500 mg tablets) prior to each dental visit, 2 visits so far, once a week - because of my hip replacement.
Posted 7/28/2011 8:02 PM (GMT 0)
Thanks for the advice. I guess if it aint broke, don't fix it. I will try reducing Asacol in a few weeks if I stay stable and see if it casues me any symptoms. I am just sick of all the co-pays for meds and taking things not knowing whether they are effective. If I add up all my co-pays, it must come to $150. That's a lot of money!

Sherry, I am not even in the range. My levels are below the theraputic range. Are you in the range but on the low end or not even inside?
Posted 7/28/2011 8:25 PM (GMT 0)
I'm just a smidgeon over the low end of therapeutic. If you are not even on the low end, maybe you should discuss this with your doctor. Because like you said, why be on an immune suppressor if you are not getting ANY benefit.
Posted 7/28/2011 8:57 PM (GMT 0)
I wish I could draw what the charts look like for you, lol. It looks like a line well under the theraputic range on one side and a line going up higher on the liver panel side. It's pretty sad. I had the initial blood work to see whether I could metabolize 6mp/imuran and it showed good results. Funny how it gets into my body and these are the levels I am able to achieve.
Posted 7/28/2011 11:14 PM (GMT 0)
Like I said on the other thread, I feel like we have a lot of similar issues, so here we are again :) I've actually been wondering the same thing myself about Asacol HD. It didn't really do anything to stop my initial flare and when I went onto the 6MP, my doctor had me continue to take it anyway (I never really asked if there was a point to continuing it even though it didn't help before). My new dr raised my 6MP dose (I was subtherapeutic at 50 mg) so that I could get off the pred and that was going fine until today. I just did another test to look at my metabolite levels now that my dose is 75 mg/day, so next week I should find out whether that's helped.

I'm with you, if a med isn't helping me, I see no reason to take it, especially when it makes up the majority of the pills that I take on a given day. I don't have a lot of faith in the Asacol HD and my plan was to talk to my dr about getting off it, but with the unpredictable nature of my disease, I don't know how good of an idea it is to change anything right now.
Posted 7/28/2011 11:55 PM (GMT 0)
amanda, I totally understand your situation. My GI is really supportive of me stopping meds if they aren't helping but I think even she has some worries about me changing anything right now, it was so difficult to get my flare up stabilized, it would be my worst nightmare to cause another flare but which of these drugs is keeping my condition stable? I think I am going to ask my GI about decreasing Asacol. I hate taking 8 pills a day if they aren't helping. Did you ever see any results from Asacol? I did during my first big flare up.

I used to be on 75mg or 6mp but I was below the theraputic level. After that, I started taking allopurinol and my levels went way up but my blood counts dropped too low and I had stop 6mp for about a month. Then I went back on 25mg 6mp with allopurinol and they dropped again and I had to stop allopurinol and now I am back on 50mg.
Posted 7/29/2011 12:07 AM (GMT 0)
It sounds like it's not time for you to do a change up of meds. I think you have to feel confident before you jettison anything.
Posted 7/29/2011 12:18 AM (GMT 0)
fecal transplantation

I can't say it enough. It is a miracle treatment for me. I'm still in remission as a result of FT.
Posted 7/29/2011 2:18 AM (GMT 0)
I'm throwing this out there, but would it be possible for you change your 5ASA while still on 6mp? See which 5ASA works better for you. It could lower the risk of flaring.
Posted 7/29/2011 3:16 AM (GMT 0)
My GI Maria Abreau told me if I reduced/stopped the 5asas the uc would return in time. Earlier this year my uc was very quiet and went from 8 Pentasa per day to 6 and within three months I started bleeding...she was right, although I wish she wasn't. The same holds true for my 5asa rectal meds; if I don't use them at least 3xs a week I bleed a bit.
My thoughts are if you're doing well where you are at and can stay well for extended periods, then why fix something that's not broken? I completely understand it would be great to take less meds.
Posted 7/29/2011 3:38 AM (GMT 0)
I think it would be a DREAM to be able to take less meds! :) My husband refers to my medicine cabinet as breakfast, lunch and dinner. lol

I am hoping and crossing my fingers for you NSG that you continue to hold the good pattern.
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