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wean/cold turkey off Lialda/5-ASA - would love to hear from you!

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Ulcerative Colitis
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Posted 9/17/2012 10:08 PM (GMT 0)
Would love to hear from others who have attempted/successfully stopped taking 5-ASA(mesalamine, Mesalazine, lialda, asacol, pentasa, apriso, salofalk), was it from your own decision, or with another professional/Dr. Did you wean or go cold turkey? How did it go, are you still off of drugs or back on? Did you experience discomfort? Would love to hear your story! I've been working on myself a lot and have been feeling better and better

not to be disrespectful, but if you haven't done this yourself, firsthand, I am requesting this conversation stay on track with what those have first hand, self, experience vs. what we've heard from others we "should" or "shouldn't" be doing.

thanks everyone for respecting my request, healingwell is a great resource for all of us
Posted 9/17/2012 10:31 PM (GMT 0)
so are you wanting to do this, or just curious ?

and if you are doing well, why do anything different ?

yes, i have done - and at the time i thought i was in a good place to try it - no dr, just me = fail ! the drugs were doing their job, go figure -

it took me a long time to get here - made some mistakes, doing well now -

imo, uc is like a headache - not one cause, not one fix - take a drug, symptom goes away - stop the drug without addressing the cause, problem returns -

have you figured out the source for you, cuz i can guarantee it's probably not the same as mine - i belive that ucers are like snowflakes - every single one is different - same diagnosis, infinitesimal number of causes and fixes -

my only recommendation is be as sure as you can be before you move forward and have a plan if it takes a wrong turn -
Posted 9/18/2012 1:26 AM (GMT 0)
While I was on prednisone, I stopped all 5ASAs for a while and I had no problems. I think I would probably experience UC symptoms if I tried to do it now while I am not on prednisone. I would love to try (I am sick of taking so many pills) but I only take 25mg of 6mp and I take 2 Lialda a day, I've managed to reduce the dose, in the past i've taken 3600 and 4800mg. Maybe some time I will try for 1200mg.

Why do you want to stop?
Posted 9/18/2012 1:30 AM (GMT 0)

notsosicklygirl said...


Why do you want to stop?

I'm betting on the fact that she doesn't want to be a... what they call it, "Med-Lifer" .
Posted 9/18/2012 3:26 AM (GMT 0)
I've gone off asacol twice, once weaning down and once cold turkey from a low dose (3 pills a day). I was doing really well both times. The first time was by choice, got to feeling like things were going well and maybe I could do well without it. Second time I ran out of pills and had to wait a few weeks because of insurance issues.
Neither time was with my doc's approval.

Both times I flared within a few weeks of stopping the asacol.

I was not on pred either time. Don't remember what supplements or diet stuff I was doing the first time, but I was not on nicotine back then.

The second time was just a couple months ago and I was still using everything in my signature. I'm just now adding mesalamine enemas and still waiting to get out of this (relatively mild) flare.
Posted 9/18/2012 4:41 AM (GMT 0)
@notsosicklygirl - thanks for responding. I'd prefer to be off of meds 100% if possible! Avoid potential side affects, interactions. etc.

@soystud - thank you. yes I am doing well, but it's still with Lialda(though today my body didn't 'ache' until 3pm asking for the drug). I'm focusing on the cause, for me it was poor diet growing up and the way I have handled what I perceived as stressful situations/interactions/relationships in the past. no longer the case. Each day is better than the last. I feel I'll have to wean slowly , my body has been use to mesalmine since 2001, so rather than guess I'd love to hear from others who have paved the forest clearing. I'll be having a conversation with a naturopath and GI shortly but want to educate myself on other first hand experiences first

@hekela - thank you. How did you do your weaning, how gradual? Sorry to hear you flared without the asacol. What is c-scope, colonoscopy? My favorite part about your signature is the part where you are happily married. congrats
Posted 9/18/2012 4:45 AM (GMT 0)
I stopped in the past (Azulfidine en-tabs, Asacol, or Dipentum) because of side effects, but my UC always flared anew, and I topped out of Rowasa after 14 yrs of successful intermittent use. So I would agree with Soystud-- if a med regimen works for you, be very cautious about abandoning it no matter how well you may feel at the moment. UC can return with a vengeance so that the previously helpful med no longer works to subdue the new flare. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/18/2012 9:42 AM (GMT 0)
Honestly I don't remember how gradually, it was years ago.
If I had to guess I'd say reducing by one pill every couple of weeks.

Yes, c-scope is colonoscopy.

And happily married for almost 16 years! We got hitched young ;)

I wish I didn't have to agree with everyone cautioning you not to go off the meds if they're working, but I do have to agree.

I hate taking pills, I rarely ever took anything for a headache or any other pills. Now I won't quit unless they are ineffective or we get our cure someday. It sucks and I hate it but my body has let me know that I'm going to be really sick without the meds and other stuff I do.
Posted 9/18/2012 11:39 AM (GMT 0)
beachlife,

I was on mesalamines for several weeks, and then developed an intolerance to them, so I stopped cold turkey. Funny thing is that when I was first taking them, they did nothing for me. And then one day that changed - it went from doing nothing to making my symptoms way worse: terrible stomach pains, cramping, liquid D. So I stopped it cold turkey.

And at that point, I had already been on mostly SCD diet, but then I started playing around with alot of other factors: supplements, probiotics, slippery elm powder, l-glutamine amino acid powder, adding more protein shakes, tweeking my diet to more protein and then finally Paleo, and finally the piece de resistance for me was: LDN, low dose naltrexone.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

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 think it's great that you are looking for a way off the meds, and I can only assume you are doing it because you are handling things by making changes to start feeling better, and see it's making a difference?

 

Let me know how we can help you.

 

Posted 9/18/2012 2:06 PM (GMT 0)
Hi Beachlife,
Thanks for the post! I am in your shoes...I am slowly coming out of a flare and want to reduce my meds. I called my doc a few weeks ago and asked her about tapering off Lialda (currently on 4 pills a day). She suggested trying 2 pill for a few weeks and then to get back to her. She also told me to discontinue the cort enemas but to remain on the canasa. She advised me to take the canasa at least every other night. Regarding the canasa, I know she's right. I started this nasty flare b/c I went off it completely. I am accepting that canasa will be part of my life forever. I have proctitis limited to the first 6 inches, so the reatals really help.
Regarding the lialda, I was went to 2 a day and within a few days, blood returned. Then, last week I had a gynecological surgical procedure that required ibuprofen. I told my doc I couldn't take it b/c of the proctitis, but she said I had to. So, I did....so, I increased the lialda to 3 a day, so that's where I'm at. Hoping to go down to 2 next week. My dad also has proctitis and he only takes 1 lialda a day. That's my goal...1 a day with a canasa every other. I don't think I'll do better than that. I've learned my lesson about going off cold turkey. Again, as the mantra in this forum goes, we are all different. You're smart to gather information....in fact, I didn't even think to taper off the lialda until I got on this forum. Hope this helps...good luck!!
~Cita
Posted 9/18/2012 6:01 PM (GMT 0)
Never been on lialda but re-flared upon ceasing asacol, pretty quickly. Now back on (for almost a year), and slowly improving after having gotten much worse.
Posted 9/18/2012 6:15 PM (GMT 0)
I was on Lialda a few years ago and stopped it abruptly BUT I got switched to Sulfasalazine, a cheaper, old school drug. Best thing that happened to me because my hair started growing back and the aching joints went away. I now have proctitis and doc switched me back to Lialda 3 months ago ... I am switching myself back again along with keeping the enemas ... I don't think it is a good idea to go cold turkey on any UC medication.
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