Quincy, questions anyone

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braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 4/10/2008 7:01 AM (GMT -6)   
Went to dr. yesterday. I am tapering the Pred from 20 to 15 mg. for 5 days then using my own judgement on the mg. from there on to taper down till off pred. I intend to do this very slowly. But...
He then wants me to wait a week and just STOP the canasa. He said I don't have to taper.
 
He only wants me on asacol.
I asked him about treating both ends and he said he didn't think it was neccessary.
He thinks the pills will take care of it. I am afraid they won't.
Now I was only on asacol before and to be honest I was only taking 2 pills in the morning...I know how stupid of me.
 
I don't intend to just stop the canasa. But, how should I taper?
Is it every other day for a week then every 2 days? What is a maintaince dose?
 
This flare was really bad. Of course It is my fault...I haven't had a flare for the last 5 years and I just didn't think until it was bad...never again.
I let it go almost 9 months or more. How stupid of me. That WON'T happen again.
 
I never get sick and I didn't think I was "sick" then. It threw me when the dr. asked me how long had I been "sick", I guess I just didn't think I was "sick".
 
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/10/2008 8:19 AM (GMT -6)   
It's ok. Most if not all of us have tried to ditch our meds at one point hoping that it all was a fluke and that we could be healthy without all these meds. I know that the minimum dose of Asacol is 6 pills a day for maintenance dose and I see you are taking only 4. I think the tapering schedule you have for the Canasa sounds fine. If you were to get worse then you could start taking them more often again. Good luck with the Pred taper. I hate that stuff.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/10/2008 8:58 AM (GMT -6)   
My GI doesn't believe in tapering rectal meds either (except Colocort) but I learned the hard way that I have to or I will start flaring again. I think you should listen to your body. Taper if you feel that is best and just keep an eye on your symptoms. I agree that we probably have all tested our limits with this disease. We need to live and learn from our mistakes is all.
 @--->--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
 
 
 
 

 
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 4/10/2008 9:58 AM (GMT -6)   
When I asked my GI about staying on meds, he said it wasn't necessary if I was in remission but I have a very mild case of proctitis.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/10/2008 12:46 PM (GMT -6)   
Tell your doc that you respectfully disagree about tapering the Canasa and you would appreciate having enough refills to do as your body needs.

Taper from nightly to every other night - when you're stable there taper to every third night, etc.

Yes, we've all played with our meds or become complacient about taking them as we should. Berating ourselves doesn't help - pick up where you should be and go from there.

Good luck!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/10/2008 12:50 PM (GMT -6)   
My GI said that during a flare I should take Canasa every day for three weeks and then taper off to every other day per one week, then twice per one week, then one per one week, and then none.
 


braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 4/10/2008 1:14 PM (GMT -6)   
Thanks for all your input. After I get off pred, I will do the every other night for a week than so on. I am not sure if I will do none tho. Still question that. I just don't think the pills get far enough down to the rectum.
Still have questions on weather to stop or maintaince canasa.

My dr. did give me refills on everything. believe me I have a stash. I will never be out of meds again. As others have said pharmacys just DON'T stock these meds.
thanks.
Jan
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30703
   Posted 4/10/2008 1:39 PM (GMT -6)   
Hi...I wouldn't taper the Canasa until I was off the pred.....you will have symptoms somewhat while tapering the pred anyway.

Stay ON the Canasa nightly....See how you do and then taper the pred.

Your doc is a dork....sorry to be so disrespectful. I don't get it.

You can tell your doc you want to experiment...and you'd appreciate his support. It's your bum after all!

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 !!!


braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 4/11/2008 6:11 AM (GMT -6)   
Quincy, After I get completely off the Pred, I will wait a week, then taper the canasa. I will use canasa two nights on then one off. I will do that for a week then go to every other night. Then start to taper more.
My question is:

do I stay on a maintaince dose? What would that be?
Should I get off the canasa completly?
Should I try to get off the maintaince and see what happens?
I DON'T want another flare.

My dr. says it is up to me how I taper off the pred. He gave me some guidelines and said to listen to my body.
BUT he did say to get off the canasa. I don't think he will object to my experimenting...I am going to anyway...It is my body and I need to listen to it.
From what you said that might be a mistake to get off the canasa completly.

He did say that if I start to flare...I could always do another round of Pred....I don't think they (drs.) GET it!!!
I told him NO! I would do the cortifoam before that and any other butt meds.
He said, "the cortifoam didn't work last time"
I said, "I had a SEVERE flare", I don't intend to let it get that bad again before doing my meds. I also told him I had a stash of meds and I intended to use them BEFORE Pred.

He listened and didn't disagree...didn't agree either. He just said to listen to my body and call if I had any problems.
I think he is really leaving it up to me how I want to treat my butt.
If not It is going to be that way anyway. I really do think he will go along with anything I want to try.
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/11/2008 7:02 AM (GMT -6)   
hi Braillegirl,
Maybe I am missing something, but it still doesn't sound like your doctor has a clear plan for keeping you in remission with maintenance drugs. I think you are great for questioning him and taking control of your treatment. However, I think that the ideal situation is to be with a doctor who *gets* that prednisone isn't always the answer. I'm a little worried that your doctor is just going along with what you want instead of making decisions with you.

Having a doctor who goes along with what you want is FAR better than fighting with a doctor who disagrees with you. But, the best is having a doctor with whom you can work to figure out what you need. I mean, the doctor is supposed to be the one who knows more. Right? :)

All I guess I'm saying is that it sounds like you have this under control with a plan of your own, but you might want to try consult with another doctor who will won't suggest prednisone and who will maybe come up with a creative treatment just for you.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 4/11/2008 8:36 AM (GMT -6)   
I agree with you. Most drs. just prescribe pred as a first treatment. I DO like my dr. we do talk about the plan...I just think his first plan of attack is/WAS pred.
This time I did agree because I was so miserable and I NEEDED a quick fix. The next time hopefully it won't be so bad and I can get a handle on it and control it so it doesn't get bad enough for the dreaded pred.
He listened to my explainations of why I didn't think the cortifoam didn't work and did sorta agreed with me.
I also think most people do not take a pro-active stand in their own health, and just follow drs. orders without questioning them. He did commet that I had a lot of good questions and he thought I could handle the meds myself and if I needed or had questions to just call him anytime.
I think since he has never had UC himself...that he just doesn't know what most on here know.
I have learned SOOOOOOOOOO much from this web-site. To bad more drs. don't come here to get first hand knowledge of how this disease works.
I know schooling and all they go through to be the professional BUT...it doesn't account for first-hand knowledge.
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.

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