Thinking of stopping all medication

Just finished a pred cycle, and now thinking of stopping all my meds... I feel as if the medication has made me worse, but I'm probably wrong.

What do you guys think of tapering of medication 100%? has anyone done it?

Info:
21, Male

Meds:
- Mezavant (Mesalamine) 4.8G Daily
- Imuran 150MG Daily

Thanks

Funny my GI told me my Meds are for bleeding and urgency, if I don't have those symtoms (which I don't) stop Meds. :/ it's a worry! He said the worst of the worst cases are on this forum and most of his patient can go med free or significantly reduce them. I'm still wary because of this forum but I know my self I've been med free heaps of times before and my symtoms gradually returned and were easily controlled with starting Meds again.. Now I'm scared to tempt fate..

ya, i've been fortunate - in 10 years i've only been on pred twice - this last flare, which hit the end of january, was a good one but i was able to get past it without meds -

how long have you been on the imuran ?

Some studies on the subject.

Abstract: Ulcerative colitis is a chronic condition that requires long-term treatment. The first-line therapy remains 5-ASA, which is available in a variety of different formulations and dosing schedules. Multiple studies have demonstrated that adherence rates to prescribed 5-ASA products is below what would have been expected with significant consequences for important outcomes. Worse disease outcomes, higher medical costs, and even potentially higher rates of colorectal cancer have been associated with nonadherence. Nonadherence is multifactorial, fluid in nature over time, and dependent on disease activity level. Interventions to improve adherence rates have to be individualized. With the advent of simpler dosing regimens it was assumed that adherence rates would improve, but this has not necessarily been the case. Despite our current knowledge about nonadherence, it remains difficult to manage in the long term.

http://www.dovepress.com/optimizing-use-of-5-asa-in-the-treatment-of-ulcerative-colitis-focus-o-peer-reviewed-article-PROM-recommendation1

1,693 UC patients met study inclusion criteria: 72% were nonadherent to 5-ASA treatment (n = 1,217) and 28% were adherent (n = 476) in the 12-month study period. Compared with nonadherent patients, adherent patients had 31% fewer hospitalizations (P = 0.0025) and 34% fewer emergency department admissions (P = 0.0016). Adherent patients had 25% more pharmacy prescriptions overall (P <0.0001) and 71% more UC-related pharmacy prescriptions (P <0.0001) than did nonadherent patients. Total all-cause health care utilization was 1.13 times higher for adherent patients than for nonadherent patients (P = 0.0002). After adjusting for covariates, total all-cause costs were 29% higher for nonadherent patients than for adherent patients (mean [95% confidence interval]: $13,465 [$13,094, $13,835] vs $17,339 [$17,033, $17,645]).

http://www.biomedcentral.com/1471-230X/12/132


The primary benefit of long-term adherence to 5-ASA/mesalamine therapy in ulcerative colitis is a decreased chance of relapse. Kane and colleagues[21] followed a cohort of 99 patients with ulcerative colitis for 24 months. The medication adherence rates were calculated from validated pharmacy records. Patients who were not adherent (defined as refilling less than 80% of their prescribed medication) were more than 5 times more likely to have a recurrence of disease (hazard ratio: 5.5; 95% CI: 2.3-13). By the end of the follow-up period, 89% of adherent patients maintained remission compared with only 39% of nonadherent patients (Figure).

http://www.medscape.org/viewarticle/563408

Maybe you are intolerant to the mesalamine. If you wanting to see if you are then you could stop those but continue the Imuran. Thats what I would try. I also would not EVER go med free. Stinks to be only 21 with this disease but would stink more if you got so inflamed that nothing helped and you needed your colon removed.

"He said the worst of the worst cases are on this forum and most of his patient can go med free or significantly reduce them. "


said by petah, not sami -

I stated what my GI said, clearly, being symtom free and still using my Meds indicates my trust is not solely in my GI. The only time I intend to tempt fate is if I'm able to do FT.

Sami, if your symptoms at the start were simply bloody stool and fatigue, and your maintenance medication was oral mesalamine after your first round of pred, that was an error on your DR's part. Perhaps you are intolerant of mesalamine, I can't say. But perhaps also what happened is the oral mesalamines did nothing to prevent a return of the proctitis. Oral mesalamines do not treat the rectum. Your GI should have put you on a medication that prevented a return of the inflammation in your RECTUM. That would have been rectal mesalamines, not oral.

I would suggest that you get rectal mesalamine now. Do you know the extent of the inflammation your bowel? If it extends above the sigmoid colon you will need oral meds. If it is limited to the rectum and sigmoid colon you should use mesalamine enemas. If it is limited just to the rectum you can try mesalamine suppositories.

No, it is not normal for a young person to take medicine everyday. But, sorry to say, you have a chronic condition that requires continuous attention. It's not the end of the world. Maintain your remission and enjoy your life!

good advice jp !

i'm 56 but only been at it 10 yrs - seriously seems likes months sometimes -

I was on basically all forms of the 5-ASAs: Canasa, Balsalzide, Asacol, Rowasa ... *none* of them helped, and I think some actually made symptoms worse. With my GI's blessing, I went off all meds. I recording my symptoms really carefully every day, and was even able to make graphs of how I was doing. I could show these to my GI to demonstrate that the meds weren't helping.

He didn't think my symptoms (some bleeding, urgency, cramping ... you know the drill) were bad enough to warrant drugs with potentially severe side-effects, like prednisone. So, I have done what I can with diet; have tried a number of things there. SCD has seemed to help me, and I make my own yogurt and take salmon-oil supplements. I'm in a fragile remission state at the moment.

Ultimately, what is the best decision for any individual is just that -- individual. I don't think that meds are the right answer for everyone. But they are obviously the right answer for some people! Not for me, in the end, at least not unless I get worse and am not able to sufficiently control with diet and stress-reduction.

And, of course, self-education about medications is extremely important. Both for going on, and for coming off. (As well as having an open dialogue with your doctor. If they're not willing to really talk with you about the meds, find a different doctor.)

Sami, take a look at the UC resources page, you'll find a post on LDN .

Sami, yes as far as proving intolerance to 5asa , you could start taking it again and my guess is that you'll see a pretty quick reoccurence of the same symptoms worsening , ie stomach cramps, more severe diarrhea, bleeding , etc.

You might also consider suppositories or enemas (Rowasa / Canasa). I did not do well on orals, they also made my symptoms worse. This is not uncommon.

However, I didn't find that any of the mesalamine drugs (see http://en.wikipedia.org/wiki/Mesalazine for a nice list) did me any good. They help some folks but not everyone.