Anyone ever just quit meds cold turkey?

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butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/16/2007 10:03 PM (GMT -7)   
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

Snowmom
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/17/2007 12:07 AM (GMT -7)   
I gave up my meds about 6 years ago when I got pregnant. I seemed to be fine. After my child was born I went back on them, out of habit I guess. 15 months ago I decided to stop again because of money problems. I have been doing fine but find that I flare up mildly if I eat red meat or deep fried foods. So, I stopped eating them and now I feel great at least 90 percent of the time. I have what I would consider a mild case of colitis. If yours is more severe I don't know that it would be the right move. Have you talked to your doctor about lowering or changing your meds? I know that I had severe reactions to asacol but, seemed ok on pentasa. Keep us informed on what you do.

butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/17/2007 12:59 AM (GMT -7)   
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.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/17/2007 5:57 AM (GMT -7)   
I quit Colazal cold turkey and I went into a major flare 3 months later. My only advice if you are considering quitting meds is to taper them.
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100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

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julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/17/2007 7:31 AM (GMT -7)   
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! :)
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/17/2007 10:01 AM (GMT -7)   
The only drug I tolerated after my first years of UC attack (Imuran etc weren't used yet for IBD then) was pred, and I was constantly one step forward-one back, 2 forward- 1 back, etc with that and it took me 2-1/2 years to taper off them then. Anyhow, I got into a 9 year remission on no meds at all. However, that said, I am envious of all those who seem to do well on the relatively safe 5ASA drugs, which I am allergic to. I wouldn't go cold turkey on pred, but I don't believe there are any restrictions against going cold turkey on immunosupps. or 5ASAs if they happen to make one worse.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 17.5 15 12.5 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 11/17/2007 12:45 PM (GMT -7)   

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.


61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 15 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enemas AM & PM, folic acid 1mg, Fosamax 1x month


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/17/2007 12:49 PM (GMT -7)   
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

Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/17/2007 3:50 PM (GMT -7)   
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?

butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/17/2007 4:01 PM (GMT -7)   
Horus
Im not taking anything right now and i know thats not good. Im feeling really sick. I got my referal today for ucla. Monday im supposed to go get samples of colazal. Im really sensitive to meds. Im scared as to what to take. Im scared of so many things in life right now. Mainly how im gonna take care of my 9 yr old son. He just went to go get his baseball awards and trophy and im to sick to take him so my oldest son took him for me. How am i gonna go back to work with all this pain and diarrhea? Whats gonna work and help me? I feel so desperate. No matter what i eat it goes right through me. Ive tried the scd by Gotchal. I feel like im going crazy.

Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/17/2007 4:41 PM (GMT -7)   
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.

butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/17/2007 4:52 PM (GMT -7)   
Today i had potatoes, eggs and bacon for breakfast. For lunch i had egg salad sandwhich and chips. Ice tea to drink. Im not taking any supplements nor am i taking any meds for my uc.Tried to take paxil for depression and felt worse. Take tylenol to try to ease the pain. Ambien for sleep and ativan for anxiety.

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/17/2007 5:05 PM (GMT -7)   
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.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/17/2007 5:22 PM (GMT -7)   
Well the potatoes aren't so horribly bad if you had eaten them cold. I avoid eggs because I just don't like the taste but if the are cooked then the immune antigens in eggs are neutralized. Bacon is a HUGE no no. It is full of everything that is bad for you. Not only is it full of nitros that are implicated in colon cancer but the fat in the bacon is also a big time oxidizer which will aggravate your colon. I see you had some yeasty bread there and some gluten from the wheat no doubt. You can get yeast free gluten free bread you know. Chips? Horrible if they are fried. Plus they are high in salt and too much salt will aggravate your colon. Ice tea has caffeine in it and also is immune stimulating and for you that could be the wrong side of the immune system it's working on. Maybe if you try a caffeine free type. Most likely you sugared your ice tea up too. Bad. SSRI's (anti depressants) have been shown to induce bleeding in the colon. No wonder you are not getting better.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16573796&ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12663523&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

How about mixing in some healthier food choices like olive oil, walnuts, almonds, white meats, rice, corn, no deep fried foods, and a very careful selection of meds that won't aggravate your condition?

Post Edited (Horus) : 11/17/2007 5:27:22 PM (GMT-7)


JenniD
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/17/2007 6:49 PM (GMT -7)   
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. 

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/17/2007 8:50 PM (GMT -7)   

Well, since we're all sharing...myself, I wouldn't call rice and corn exactly "healthy". All grains are commonly contaminated with mycotoxins (fungal poisons) and all corn is universally contaminated with fungus, according to JAMA 2002. The fungus...cancer-causing aflatoxin, the world's most potent carcinogen. Reported daily intake of aflatoxin is 0.15 mg-0.5 mg per day in American diet. Aflatoxin is lethal in single doses of only 10-20 mg. Vomitoxin is a frequent contaminant of wheat and corn, and can cause nausea, headaches and abdominal cramps. Mycotoxins can also contaminate foods such as peanuts, potatoes, mushrooms, and alcohol. What's a girl to eat (and drink) these days :/

I think anyone changing their diet has to give it more than a few weeks to know whether or not if it will be beneficial to them. Some may need to stay on the course for many months, depending of course, on the "diet". Your body didn't get sick overnight. I agree that some are pointless, but if they have actually helped others, I am inclined to think I would give it a fair try. There was no one more amazed than me when I found that just by changing my diet would help me get well again. Everyone is different. What works for one, may not work for all, but when a lot of people claim to have gotten better by eliminating the same foods (often processed sugars/ grains and/or dairy), there must be something to it. I think many have food intolerances and don't recognize it.


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 11/17/2007 9:09 PM (GMT -7)   
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
UC First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA,  vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Occasional  Vitamin E enema &  Rowasa enema
AloeVera juice


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/17/2007 9:21 PM (GMT -7)   
Wow guys thanks for all the info. Im going to take this advice seriously and give changing my diet a try. I confused as to what to do about the meds but im gonna talk to my gi Monday. Where would i get the mangosteen juice?

JenniD
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/18/2007 5:57 AM (GMT -7)   
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!!!

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/18/2007 9:09 AM (GMT -7)   
Butterfly 1:

Mangosteen juice is just juice. It may be healthful, and it may have converts, but it's really more or less a marketing scheme to get some people rich
while others pay through the nose for something that is really just juice, nothing more.

Please do not go off your meds. I feel like you are very unsure of what to do and subject to claims of cures that have no merit. Google
Mangosteen juice and read about it, educate yourself about what it is and what the good and bad is about it, and then make up your
mind whether you want to ADD it to your present regimen. Please do not go off any of your meds.

Just my 51-year-old advice.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


JenniD
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/18/2007 9:22 AM (GMT -7)   

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.


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 11/18/2007 11:30 AM (GMT -7)   
my husband swears by the juice, but I tried it and all the seeds and pulp had me hurting really bad, I swear I could feel them going threw my entire colon, well it seemed that way.so I started straining it, I tried it for a good while but it just caused my D to get worse. But everyone is different with the things that they can and cant eat are drink doesnt hurt to try.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/18/2007 11:34 AM (GMT -7)   
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.
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/18/2007 11:53 AM (GMT -7)   
Actually, yes, I have a brother and sis-in-law that were briefly selling the stuff. It was incredibly expensive and didn't do a thing
(that I could detect) for any of us.

If it makes you feel better or even has a good effect on your colitis, I'd never try to talk you out of taking it. I don't believe it can hurt you.

Good luck!

Your neighbor to the north,
Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/18/2007 12:46 PM (GMT -7)   
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.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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