Help tapering off meds

[Jessica]

So, I should know how to do this by now. Maybe I'm just nervous. Okay, here goes.

Recently, I've come across some luck and was somehow able to come off my 3 year roll of 9mg of Entocort. Now I'm trying to wean off my 3600mg of Asacol that I've been on since Day 1.

I've been able to lower my dose to five pills a day versus the previous nine. But for some reason I'm starting to have a problem going down to four (two pills twice a day).

Its the beginning to my end of a good few months. I can feel it. Just the twitching and dull aches are getting to be regular. Not to mention I hate that the bms are starting to bring back horrible memories.

I need advice. Not just about foods or how not to internalize stress again. But mostly how not to give up on hope.

Thanks <3

 

[Jennifer]

Why are you stopping the Asacol? Its not a med that requires a taper. I stopped cold turkey with no mention of a taper from my GI and I felt perfectly fine. The symptoms you're feeling could be a flare that needs treatment from meds rather than tapering completely. What other medication/s does your GI want you on instead?

 

[chrisnsteph1022]

Why are you weaning off a maintenance drug? Did your doctor recommend this?

 

[Jessica]

Yes and no. My doc helped me with the Entocort and down to 6 pills from the 9 of Asacol. I'm ready to be off all medication. I'm just done with it.

@crabby - When I first started Asacol I stopped cold turkey a week after starting it and had problems. Guess I'm just trying to be careful by tapering.

I've been really stressed lately, and I think that might be what's having an effect on my tummy. Just diagnosed with Grave's & thyroiditis. Still trying to get levels back to normal and maybe get off these Beta Blockers too.

 

[Jennifer]

I really don't think its stopping cold turkey on Asacol that made you have problems (especially since it too a week to have problems). I suspect its the lack of treatment in general that your body is reacting to. Its not like Prednisone where you have to wean off of it. What does your GI say about you stopping all meds? You do understand that lack of treatment puts you at risk of many complications?

 

[Jessica]

I had been on steroids since diagnosis back in May '08 or whatnot.

I know I'm still learning about this disease, as it's forever changing me and my reactions...

But please don't tell me that people expect me to stay on some medication all my life even when I am well enough to stop taking them without a flare...

 

[Jennifer]

I've been in remission for over 12 years and have been taking medication ever since my diagnosis and surgery. It's a chronic illness with no known cure so its your choice if you want to stop maintenance meds but you do have a greater risk of developing problems more often. You could take meds only while in a flare and go off once in remission but I prefer to stay out of flares completely and to reduce my risk of more surgery, more hard core meds with nasty side effects, colon cancer etc. None of my GI docs have ever suggested to go off medication completely and all have said that until there is a cure, I will have to take meds for the rest of my life. I'm used to it and fine with that but its your choice.

 

[Jessica]

Grr...

Obviously I have a lot of research to do. Do you know of any studies that show people taking maintenance meds have less flares or complications?

 

[chrisnsteph1022]

I had a med-free remission for 6 years. But it always comes back. I struggle with the idea of taking meds every day forever, too. I hate that I take so many pills every day and probably always will. Sometimes I want to quit them all and take my chances. But then I think about needing surgery or being hospitalized and change my mind.

 

[Jessica]

See, I was taking upwards of 18 pills a day (off the top of my head). I hate the idea of medication, especially if it means that it rules my life. My biggest dream is doing away with my pill boxes.

 

[Jennifer]

Grr...

Obviously I have a lot of research to do. Do you know of any studies that show people taking maintenance meds have less flares or complications?

Yes there are but they are mainly specific to a particular drug so there are a lot of studies out there. I found these for you though and there are studies attached to them.

"Once a flare-up has settled, without treatment, on average there is about a 1 in 2 chance that another flare-up will develop within a year." http://www.patient.co.uk/health/Crohn's-Disease.htm

"When given mesalamine after surgery, patients had only a 31.5 percent chance of relapse (compared to the 50 percent referenced above)." http://ibdcrohns.about.com/od/surgeryprocedures/a/crohnssurgery.htm

I'm sorry I didn't find much more but if you do a search with a specific drug in mind then you'll find studies for that particular drug. In the end it all depends on the person and the severity of the disease so its best to keep in contact with your GI and figure out what works best for you.

 

[lola99]

I hate taking all this medication too. I was diagnosed in February and I was also taking upwards of 18 pills a day. But soon I'll be down to taking two different types. Right now I take Asacol,entocort and immuran. I'll get to get off the entocort once i've been on the immuran for awhile. I think I've stressed out just as much about having crohns as i have about taking all these medications. But until there is a cure or a proven alternative treatment i'll take my risks. I wish it was different for us all.

 

[KaLa]

Hi Jessica. I know just how you feel. I have UC, and have basically been medicine-free for about 15-20 yrs. I do use mesalamine enemas when I flare to stop the bleeding. Recently, I had a flare that I thought had stopped, but it came back again - so back on the meds. I do acupuncture, which helps, but doesn't stop all of my symptoms. I see my doctor again on Wed. and am so scared that he will want to put me on pills instead of the enemas. I am really sensitive to all medications, and am afraid of the side-effects. On the other side, I would like to be "normal" again and not worry about my UC all of the time. It is so hard when your body doesn't cooperate!!! I hope that you stay in remission! I think that the not giving up hope is the hardest thing, especially frustrating when you don't have control over the health of your body. I try to look at all of the positive things - even small ones - flowers, nature, my dogs, my kids (even when they are arguing) - and stay focused outside of my body, instead of dwelling on the state of my bowels (even though they demand it at times).

 

[scottmyster]

Hi jessica, i have had crohn's and been in remission 15 years and was taking asacol and dicetel and having come off of them 5 years ago i just recently had a flare up. and now on preds for awhile . so, i don't know if it's a good idea about coming of asacol if it keeps you stable but thats my opinion but that's up to you and your doctor. i hope things work out for you. best wishes

 

[Jessica]

@crabby - I'll have to read those. Thanks for looking them up for me. I'll be sure to talk to my doc about his opinion.
@lola - I agree. The medication stress is almost as bad as the Crohn's. I wish it was different too.
@kala - I've wanted to look into acupuncure. I think I may be between 30-60 mins from the closest place that does it though. Does it really help as much as I've read?
@scott - Congrats on the long remission! Best wishes for a speedy recovery.

I'll do some more research and let you know what I've come up with. I still hate the idea of medication, and will probably try to come off of them as best as possible. I just hate the idea of trying to have a family while still being on all of these meds. I know some of them don't pass to the baby, but I don't know if I want to risk it. Plus these side effects can be rediculous. Between those and the side effects from my Grave's meds... I think I might just take the risk of not being on meds while I'm in remission.

Thanks all! <3

 

[Timmytoogood]

Hi, My doc says the main reason he thinks I have Crohn's is that when I started taking Pentasa my symptoms disappeared. I have been in remission for two years. My doc said if I wanted to taper off the Pentasa I should try. 6 months ago I cut my Pentasa back from 2 grams to one with no ill effects. When I tried to cut back to a 1/2 gram I started getting mild diarrhea and gut aches.

I am wondering if these symptoms are a sign of mesalamine (the active ingredient in Pentasa) withdrawal or if it means my Crohns is coming back. My doc says he hasn't heard anything about the symptoms of mesalamine withdrawals. I know when I tried quitting Prilosec the withdrawal symptoms were horrible heartburn. I am trying to decide if I should just quit cold turkey and see if the symptoms go away.

Has anyone here quit mesalamine? If so what happened?

 

[Jessica]

@Timmytoogood

The only Crohn's medication I'm left on is Asacol (mesalamine). I used to take 9 pills a day (3600mg), but now I'm down to 4 (1600mg). My doc and I agreed to take it down to 2 pills (800mg) a day, and leave it at that for remission purposes.

When I do feel comfortable enough to lower my dose, I only lower it by one pill (400mg). and I wait at least a month or two before I do it again. If symptoms return when I lower it, I give them a week to clear up on their own. Then I might try Imodium to help, or just take that extra pill I just cut out and try again another time.

If it's because of mesalamine withdrawal, I couldn't tell you. Not sure if I've heard of that either. I've been on 9 pills (3600mg) of this stuff for almost 3.5 years. I've only been cutting back for the past 6 months or less.

Hope that helps :heart:

 

[lifesover]

See, I was taking upwards of 18 pills a day (off the top of my head). I hate the idea of medication, especially if it means that it rules my life. My biggest dream is doing away with my pill boxes.

Only 18 a day and your complaining? I have had to take over 30 a day at times.18 is breakfast lol

 

[Emily]

Hey Jessica, I was reaing this and just wanted to input that for many people, remission without maintenance meds will almost definitely lead for a bad blockage/flare/hospitalization. I quit ALL meds when I was 10 years old because they made me feel like an abnormal little girl. I was so happy to take nothing. Of course, 9 years later I had a severe blockages that needed surgery. For people with Crohn's it looks like we have to be on some form of medication forever, and quitting will only lead to something bad.
Like Stephanie said, it feels great to be in remission off meds, but in the long run, it's probably not worth it.

Good luck to you!:hug:

 

[Jessica]

@lifesover - 30?! Wow. :ywow: You're definitely stronger than I am. Not sure if I could do that. :worthy:

@emr52 - Yea, I've been working on realizing / coming to grips with the fact I'll probably be on Asacol at least for the rest of my life. Better than the alternative, I guess. Until then, I will keep researching. :study:

:heart: