Drs Appt tomorrow, what should I do next?

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talliecat
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 6/7/2009 11:52 AM (GMT -6)   
I feel like I am in a constant flare and have been for probably the past year. I have a couple days of week where I feel better and them wham, I am running to the bathroom and laying on the couch. I was on prednisone from January-May and finally tapered off. I did feel much better on the pred but I refuse to take it again because I think the side effects are not really worth it. I have also been seeing a naturopath. My real question is I have a Drs appt tomorrow. Should I ask to be put on 6 MP? I am really not living much of a life and have 2 small children. I really want to feel better. Any thoughts?
2 Lialda a day, Generic Rowasa Enemas, Canasa, Lexapro ( 10 mgs), YAZ, Boswellia, Sesame Seed Capusules, L Glutamine, Geranium tincture, VSL 3


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/7/2009 11:58 AM (GMT -6)   
I'm not a physician, but typically when you become refractory to prednisone the next course of action is to get on 6-mp.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16710
   Posted 6/7/2009 12:10 PM (GMT -6)   
Do you think increasing your dose of Lialda may help? Or maybe using more rectal meds? Do you use rectals meds nightly? Some of us use them morning and night. I take the equivilant of 3 Lialda per day. I tried to reduce my dose to 2 a day and I ended up with bleeding. I have also heard the next step would be 6MP, I would inquire about 6MP and maybe about increasing the dose of 5ASAs. Have you considered dietary changes? Are you stil using the VSL#3? I've always wanted to try it but it's so expensive. Best of luck finding some relief.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/7/2009 4:14 PM (GMT -6)   
I would try upping your Lialda first; four per day is the maximum dose. Also, if you're not using rectal meds daily, you should be. If you don't want to do that, then usually something like 6mp or Imuran is next. However, some docs are going ahead and "skipping" to Remicade after 5ASAs fail. There is some research to suggest that the long term outcome is better by doing that.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/7/2009 4:33 PM (GMT -6)   
     The usual course that my GI takes is to begin the 6MP while still on the prednisone.  It usually takes anywhere from 3 to 6 months to "kick in".  I am presently in a flare but trying my darndest to stay off the prednisone this time.  It took me seven months to get off it last year and my last dose was on Nov 1st of 08.  I'm taking 50 mgm of 6MP and nine capsules of Colazal daily.  When I started showing symptoms of a flare (mucus in stool and urgency), I began the Cort enema nightly and Canasa suppository in the morning.  I went to my GI doctor last Wednesday and on Friday he performed a sigmoidoscope.  Yep, definitely flaring (well duh) and now I am bleeding because of the scope.  He did take a few biopsies which I am glad.  He informed me to insert the Cort enemas nightly and in the morning and to forego the Canasa for the time being.  I return to him on the 23rd to find out the results of the biopsies.
     I just read your meds.  Ask your doctor if you could switch from the Rowasa to Cort enemas.  They are a steroid but only treat the rectal area and not as bad as taking prednisone.  Why are you taking Sesame Seed capsules?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


talliecat
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 6/8/2009 2:20 PM (GMT -6)   
Thank you so much for all of your responses! I just got back from the Dr and he said to double the Lialda for the next 10 days to see how that goes and then it will be either 6 MP or Imuran ( he seemed to be leaning towards the Imuran). He said that many people with Ulcerative Proctitis respond well ( he still thinks my case is "mild"). I have been doing rectal meds either Mesalamine enemas, Cort enemas and usually a Canasa if I can stand it. I have also been seeing a naturopath but I need relief so if this doesn't work I am on to the next.

2 Lialda a day, Generic Rowasa Enemas, Canasa, Lexapro ( 10 mgs), YAZ, Boswellia, Sesame Seed Capusules, L Glutamine, Geranium tincture, VSL 3


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/8/2009 2:28 PM (GMT -6)   
If you have proctitis, it seems that it would make more sense for you to be on an oral med that's designed to dissolve lower in your colon, rather than something like Lialda which is supposed to treat the entire colon. At any reate, I hope something helps soon!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/8/2009 2:41 PM (GMT -6)   
     I have proctitis and take Colazal.  Doctor never even mentioned Lialda.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


talliecat
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 6/8/2009 4:09 PM (GMT -6)   
I tried Colazal during a really bad flare. I kept puking up orange powder so I think that turned me off. Is there anything else you don't have to take 9 pills a day that will reach your lower colon? He also showed me Apriso today... I think he knows that I do better when I can take something once a day.

2 Lialda a day, Generic Rowasa Enemas, Canasa, Lexapro ( 10 mgs), YAZ, Boswellia, Sesame Seed Capusules, L Glutamine, Geranium tincture, VSL 3

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