Q - Ditched your meds? How long till flared?

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:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 4/10/2008 10:07 PM (GMT -6)   
help!
I recently moved and in the whole packing/unpacking headache, i misplace my meds and kept pushing off searching thru tons of packed boxes for it...and also avoiding taking them......
I realized its been 3 weeks....gulp.
when i called the pharmacy for a re-fill, they said i was outta refills and needed an Rx. My dr. will only give one with a check-up appointment, which makes sense. havent been there in 8 months. the appt is next week.
 
i know its normal to procrastinate taking them and ditching 'em sometimes...has this happened to you?
how long was it till you flared?
 
sad  
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 4/11/2008 6:46 AM (GMT -6)   
I went off Colazal cold turkey once (I believe it was a January)...bad flare started in early March. I ended up on Imuran. That was 2 years ago.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/11/2008 7:03 AM (GMT -6)   
I once didn't take my Asacol for about 6 months. I did pretty good, I still had symptoms but not that severe. Until one day my body said "Hey wait a minute! Where is that Asacol?? Let's show her that we need that stuff!" And entered one of my most severe flares to date, I became anemic and it took a lot longer to get the flare under control. I was MISERABLE!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 4/11/2008 8:14 AM (GMT -6)   
I went off my meds for almost 10 years.....Didn't have many problems at all during that time. Occasional D, like maybe once a month and that was it. Then I went into my worst flare that I ever had since being dx'd. That flare lasted over 2 years. I don't think I'll try that again, I was too nervous that this time I wouldn't go back into remission.. It was great to not take any meds all that time, but I'm afraid that maybe next time I won't be able to get back into remission, so I won't risk it. I'll suck it up and take my 6 sulfasalazine and other junk each day.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 4/11/2008 12:15 PM (GMT -6)   

ahhhhh.....i see everyone reacts diffrently to being off meds. Im sure its a shock to the body and things like that....

i know the time between flares varies from person to person. I hop all stays well, till i get the meds next week, or tackle the mountain of boxes to find those glossy red pills.

 

a side question here - is it a proven fact that if going off a med, then flaring, its 1. harder to bring flar into remission and 2. the body doesnt respond to the meds in the same way as it used to?



Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 4/11/2008 2:41 PM (GMT -6)   
In response to part 2 of your question, I think maintenance and controlling flares are separate issues. As seen on this board, people have their own ways of controlling and dealing with flairs. In the past, during a flare, only large doses of prednisone worked for me, but I was able to come off steroids and colozal by drinking the antiinflammatory drink/prebiotic Haldi. And in turn, I think it helped to allow my colon to heal, and now I maintain myself with one a day. In the past, 3 weeks for me was a long time being off meds, and I wish you the best of luck in staying in remission.

-----------------------------------------------------------------------------------


yuckygut
diagnosed 1998
now off prednisone and colozal
drink 1 Haldi daily

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/11/2008 6:08 PM (GMT -6)   
It's not a good idea to go off meds cold turkey due to the unpredictability of UC. From experience I know that I'm likely to flare in 3 weeks w/o med. I would urge you to pack meds 1st & accessibly whenever you're on the move. Better safe than sorry later. Take care. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 4/11/2008 6:16 PM (GMT -6)   
I stopped the Asacol one time. I flared within three months and was back on the Prednisone. I will never stop taking my meds again. I continue to be diligent.
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 4/11/2008 7:20 PM (GMT -6)   
Got off meds in 91 soon had major flare that last years. No meds helped my flare for years. Been on meds up until
Feb of 2008 and stopped taking meds. I am taking about a half gallon a day of the natural probiotic Kefir.
Diagnosed panColitis 1990. Current Meds Asacol x4 twice a day. X6 1/15/08.        
Stopped taking all meds 2/20/08. I have always
flared shortly after stopping meds but I think the bacteria in Kefir
has colinized in my colon and I am doing great.  4/7/08 Colon still
doing great.  Kefir(probiotic) helped my colon but not my hemmies.
I still have my colon THANK YOU GOD!!!
Started 1/01/08 PRObiotics Freindly bacteria:raw milk-kefir made with raw milk natural probiotic.
1/22/08 Started cultured veggies(probiotic)
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/11/2008 8:26 PM (GMT -6)   
I have cut off cold turkey a few times. I eventually ended up having a flare again. Would I have flared anyway? Probably, I still have no faith in a prescription maintanence medication.
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed


mmccaus
Regular Member


Date Joined Apr 2008
Total Posts : 20
   Posted 4/12/2008 3:59 AM (GMT -6)   
Had 15 years with no flares after I stopped all meds. I had moved to California, was in my 20s and no insurance then, so when my meds ran out, I just waited to see what would happen. In all that time, I had just slight symptoms every couple years or so. Then a year ago, UC was back with a vengeance, worse than ever, hospitalized twice, lost 40 lbs., still dealing with this a year later. Some days not too bad, others terrible. Gained back all the weight, but have dropped a bit again lately. I wouldn't change anything, though. Was very happy to have been off meds for 15 years (they hadn't really helped all that much during the 3 years of symptoms back then anyway...)
M, 44, SF, CA
ulcerative proctitis diagnosed in 1989, active 3 years, but controlled with Sulfasalazine and cortisone enemas
15 year remission off all meds 1992-2007
ulcerative colitis returned May 2007, no remission since
concurrent infections at diagnosis: c-diff, cmv colitis, both treated and negative
meds: asacol, 4-3x/day; mesalazine enemas
starting remicade in next couple weeks


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/12/2008 8:11 AM (GMT -6)   
Sometimes with these meds, you don't see the "action behind the scenes". Meaning that it is keeping things nice, calm and quiet in there. So when you stop taking your meds and don't supplement them with anything, things start to slowly simmer in there until you are in a full blown flare. Things can present themselves while in the simmering stage as occasional pain or occasional bout of D but stops and you think hmm ok, must've been something I ate. Then the next thing you know, your flare strikes and because your body has been so long without meds, it can take longer to get under control because healing can not take place overnight. Worse the flare = harder to control.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/12/2008 3:59 PM (GMT -6)   
6 weeks from stopping AZA to mod/severe pancolitis.

:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 4/16/2008 11:51 PM (GMT -6)   
a few days after posting this i faced reality and faced the fact that my health was more important than NOT looking through my packed up moving boxes. The energy expenditure of going through many, many boxes was neglible in light of the potential health risk of not taking meds. I felt that though I may be in remission, i have no clue what stopping cold turkey would do - due to the "unpredictability of UC" as Old Hat put it.

Some good new ---- saw my GI today and he
1. decreased my meds from 8 a day to 6 a day.
2. he said its looking good over in colonville
3. told him abt this awesome site and how helpful and community minded it is - if he wants to pass it on to other patients!
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/17/2008 10:45 AM (GMT -6)   
Good girl!  cool  It's much safer to try to manage the colon than to ignore it while hoping for the best. I learned that the hard way-- because my 1st gastro really didn't know much about medicating IBD over time. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 5/4/2008 2:37 AM (GMT -6)   
Old Hat - thanks for your encouragement and usual dose of level-headed wisdom.
I'm so upset to hear that a gastro was unable to help you, especially when you needed it most! What happened, if you dont mind my asking?
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


dreamers
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/4/2008 7:09 AM (GMT -6)   
i went off the meds and didnt have a flare up.. and when i finally did flare up i was in the ER. then for a year i just had it normally & now i am in the worst flare i have ever had. I have had it since July and it is MAY.. medication is helping now.. so i might stick to that:)
**Stephanie**
 
23
Severe UC since 1999
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30853
   Posted 5/4/2008 2:11 PM (GMT -6)   
To everyone.....It's a good lesson to learn that meds serve a purpose...especially long-term.   I certainly would rather not be on any.  I tried, but I'm a med-lifer for sure.

Maintenance is a process that takes commitment which is't easy considering life gets in the way.. There is a long series of symptoms and time that are from remission to being in a serious flare.

Knowing when to step in rather than denying they're happening (or hoping they'll go away or justifying they're not that bad yet...been there done that) is what we all learn sooner or later. 

and to add to my constant repetition......rectal meds used to treat and then tapered to maintenance can be your best friend in the process.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 5/4/2008 1:28:23 PM (GMT-6)

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