Anyone ever just quit meds cold turkey?

Im beginning to give up on the meds since alls they seem to do is make me sicker.  Has anyone ever gotten so fed up that you just quit the meds and got better?

uc x 20yrs

OK I WILL.IM GONNA TRY THE COLOZAL AND IF THAT DONT WORK ILL TRY PENTASA. I PRAY SOMETHING WORKDS EVENTUALLY. THANKS FOR YOUR INPUT.

I've quit meds cold turkey a couple of times.

First, I did it when I was in a serious flare. BUT, the difference was I started seeing a master acupuncturist when I quit the meds. My acupuncturist was able to get me into remission within 2 weeks and keep me feeling great for 10 months. It was amazing. But when it stopped working, I went back on the medication.

Second, I just went off meds cold turkey because I figured they weren't doing anything and I was feeling ok. I got about 3 decent months before another flare. My doctor and I figure that without the meds, I can coast for about 3 months. Now, with 6MP, I can stay in remission (or with just very minor flares) for a lot longer.

There are generally no problems with quitting 5ASA drugs or 6MP cold turkey. No tapering involved. But I think you would want to substitute something else in their place. Like, say, taking a medical leave from work and trying a week of complete rest, good food, and exercise.

BUT -- If I had a serious flare with bloody D, I wouldn't let that go without some kind of treatment.

Butterfly, it sounded like your new doctor was willing to work with you to find a treatment that works. Do you think that together you might be able to find a med combo that works? Don't be too discouraged. I swear it took me nearly 10 years to find what works for me. With this board, you're getting the benefit of everyone's experience, so it shouldn't take you anywhere near as long! :)

If you must stop then tapering definitely would be in order.  It would be nice if the right meds could be found for you. 

My husband is obviously in a different category since he is finally getting into a remission and the drugs he is on must be what works for him.

From what I have read and been told when you are in a really bad flare and can finally get out of it, it is easier to manage a remission than to try to get a bad flare under control. 

As time goes on I am sure it is very tempting to want to stop meds when it seems like you're feeling quite normal.  Maybe some of his meds can be reduced but I would be very nervous to see him try to eliminate them having seen him go to hell and back.  Never want to see him that sick and in that much pain again.

Good Luck with trying the other meds.  Hope something finally makes a noticeable difference for you.

butterfly1 said...
Sorry guys im just frustrated. Thanks for caring. Im afraid to take pred because of past side affects. I know i have to do something though cause im getting worse. My md actually took me off work for this whole month.I have to go back Dec 1st and im not getting any better.Monday im going to get the colazal samples and try them. I have mesamalmine enemas but i havent used them because they really messed up my stomache last time. I just pray that someday we have a cure and or meds that help us instead of add to our symptoms.

uc x 20yrs

Take entocort instead then or do every 3rd day dosing with pred to avoid the sides. You could be either a slow or fast drug metabolizer. Ask your doc to check how fast you metabolize drugs via a test. You might just need a much lower dose.

What is your diet like? What kinds of supplements are you taking? What other meds are you on?

The scd diet is a joke. It is incomplete, rely's on 1950's era research and is way way way too restrictive unnecessarily.

Stay away from red meat. Eat chicken, fish, turkey.
I have great success with using a crock pot and eating softened stewed food. That way I can still get some vegies in that won't irritate me cause they are raw and hard to digest.

Stay away from spices like salt, white and black pepper and the kind that can over power the taste of foods because they are so strong like chives, parsely (most of the spices they put in italian food lets put it that way). Avoid yeasty things and breads. Avoid yeast extracts in foods. Most processed foods have yeast extract and MSG in them so be careful to avoid them. For now until you have your system under control avoid immune stimulating foods like oat bran and mushrooms.

Olive oil is your friend.

Shop at your local organic health food store.

Read your food labels like your life depends on it.

Drink rice milk instead of cow milk. They sell it at most grocery stores and also at walmart.

Rice and corn will become your grain mainstays. Cut out gluten containing foods for now . Most grocery stores have a section with gluten free foods. yes I know you aren't gluten intolerant. Yet you'll find the prepackaged gluten free food snacks a nice convenience that are free of ingredients that can be irritating and not just gluten.

Don't eat ice cream. Avoid foods with carageenan.

Don't drink fruit juices or drink tons of caffeine containing drinks.


You'll have to find a way of increasing resistant starches into your diet like beans, hi maize corn starch, inulin, tapioca. Yes go slow if the gas pains hurt too much. But it's important to get this into your diet. Get fiber into your diet or else you'll keep suffering needlessly. Bulk your stool and slow it down. WHITE rice and slow things down. So will potatoes. Eat potatoes cold they will have resistant starches in them. But go slowly intoducing these foods into yoru diet. Make psyllium a routinely taken supplement along with calcium and vitamin D. Fiber choice makes a great product that has vitamins and calcium and inulin all rolled into one.

Don't just quit your meds cold turkey. That's just asking for a flare. Switch meds if you have to but cold turkey will shock your system. If you are inolerant to the 5-asa type meds then there are alternatives.

If you are sensitive to meds that could mean you are a slow metabolizer of drugs or you are intolerant to salicilates. As far as pred goes it's pretty harsh and I won't take it again. I'll opt for entocort or every 3rd day dosing of pred to avoid the sides. Hang in there. It just takes awhile once you have all your ducks lined up. I could rail against the SC diet all day long.

Tell us what you are taking and what you are eating and what supplements you're on.

I'm also not a believed in the SCD diet. I know it works for some people but I tried it for a couple weeks once and nearly lost my mind. I'm convinced that my particular UC condition is not diet-related. Maybe that's not the case for others. I don't know.

The suggestion above for entocort is good! I second that. Or Cortifoam, which I find a lot easier to use. I think the amount of steroids absorbed into your system is way less than Pred, so chances are you wouldn't have the same side effect reactions. You could always try a half dose. I swear that the Cortifoam is my miracle drug. Also Tylenol w/Codeine because the Codeine has that great side effect of constipation. For me, it just makes me normal again. Of course you can't be at risk for addiction or else you'll wind up with a nice little codeine addiction!

The worries you have about work, family responsibilities, life are real and we all have been there. If there is any way at all you can try to assume that this is all going to work out, it could help relieve the extra stress that worrying causes. It's a vicious cycle: we're sick, we worry, and then the worrying seem to make the sickness worse. Imagine that it is some months from now and you have found a drug that works and you feel better. If you assume that will DEFINITELY happen at some point, maybe you can look at this time as just the experimental time you have to go through to get to that point? Sometimes that helps me cope.

Yes, tell us what you are eating. Have you tried the non-dairy Ensure drinks? At least you can try to get some protein and vitamins that way.

I was diagnosed with UC earlier this year.  I was on 60mg prednisone & asacol. Then did a rapid taper with dr.'s orders off of the pred.  He switched me off of asacol to Lialda.  I had a flare with days of the first taper off of the pred. so went back to 40 mg and then started a really slow taper after a month of 40mg.  Within 2 weeks of being off of the pred. early this fall, I started to have another flare.  Dr. put me back on 10 mg and 4 tablets of Lialda.  I wasn't getting any relief and was going down hill rather quickly.  He didn't want to put me back on a high dose of steroid since it didn't work well the first 2 times.  He told me that I would have to start taking azathioprine now.  I have not liked ONE thing that I have read about that drug.  I started to take matters into my own hands.  Started drinking 6 oz. a day of mangosteen juice, taking probiotics, changing my diet.  And with that I started seeing improvements in a matter of a couple of days.  Within  10 days, I had no pain, no blood, no loose stools.  My GI dr. asked what I was taking that I was same as symptom free.  I told him about the juice and he had never heard of it and just laughed it off.  Well that didn't sit well with me.  I went ahead and started taking the azathioprine, but am not going to take the 200 mg that he wants me too.  I am now thinking about quitting it cold turkey myself, but want to find out if anyone else has ever done that with that drug.  I have only been taking 100 mg. for 2 weeks so think that if I quit it now, I won't be bothered much from it.  I fully believe that there are more natural and safer ways for those of us with UC to control our disease.  I am going to continue research and try new things and will share any good things that seem to work for me with all of you.  I feel so grateful that I have found a place where everyone else knows what I am dealing with.  So my first suggestion is to try mangosteen juice....I highly recommend that for a start.  I can help anyone who has never heard of it, get some.  Am researching a baking soda treatment and aloe vera treatment and will share what I find with that. 

If you want bacon. Go to the Whole Foods Market. I buy the Wellshire Classic Turkey bacon. No nitrates or nitrites. not preserved, all natural turkey raised without antibiotics. It is minimally processed. Kinda expensive $4.99 for 12 oz. But it is really good. I also use the crock pot for chicken thighs weekly. I add baby carrots to my chicken.

snookiebow

There are a few different ways you could get some juice. 

*I signed on with Xango (a worldwide distributor of mangosteen juice) so that I could purchase it myself.  Xango is a network marketing company.  It claims to be top of the line.  That is the brand that I take.  I have also seem it on ebay.

*I have found a website or two that sells the juice (other brands).

*And I have seen cheaper bottles of the juice at Sam's Club.

I know that there are tons of people out there that are not interested in a person's health and just trying to make a buck, but I really have been convinced that there really is something to this juice.  I can get anyone signed on with Xango if they want or help search the web for other brands.   Hope you give it a try and have good results.  I take between 3-6 oz. a day now.  When I was having a bad flare, I took at least 6 oz (2 in the morning, 2 at noon, & 2 at night). 

Best of LUCK!!!

Have you ever given the juice an honest try?

I'm not one of those trying to make a buck!  I just know that the only thing I changed was adding 6 oz. of that juice to my daily intake and I started to see results.  I also have a sister-in-law that started taking it for some intestinal issues and she improved while taking it.  She thought she would stop taking it and only went down hill again.  I wouldn't tell anyone to go completely off of meds without checking with dr. or researching alternatives that they might want to try.

I'm just a gal from small town Iowa who was convinced of something that even I was REALLY LEARY of.

I'm not a fan of Mangosteen juice; and yes I've tried it as I too was looking for any kind of relief. Many people in my office bought it for different ailments, and it didn't help one bit. Please don't go off meds; try and work with your doc to find something that works for you.

Alot of IBDers tend to have troubles with corn, I don't thank goodness as I absoutely love corn, but I thought I'd mention many IBDers do have issues with corn so it's also important to go by how you react to certain things.

:)