new dr appointment

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Regular Member

Date Joined Nov 2007
Total Posts : 393
   Posted 12/12/2007 9:14 AM (GMT -6)   
friday we are going to see a new dr in nyc, i want to be sure i ask the right questions, but i don't know if there's anything left to ask. my daughter symptoms seem to be quieting down, but that said she still has 3-4 d's a day but the last 3 days blood is on tissues and she doesn't see any in toilet. i hope this means it's quieting down? she was having many more movements before with the blood. we upped the asacol from 8 to 10 a day,
could we expect to lower the dose if all contiues this way, she is so small i worry about so many pills. she will be home tomorrow haven't seen her since thanksgiving.-thanks
Mom to 19 year old daughter diagnosed 11/07.

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 12/12/2007 9:19 AM (GMT -6)   
If that doseage is helping her, I would think she should stay at that and try to get "bigger." It is something that you will have to discuss with the doctor, of course.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica

Regular Member

Date Joined Jul 2007
Total Posts : 402
   Posted 12/12/2007 9:30 AM (GMT -6)   
My GI is not a fan of lowering the dose on Asacol. I have taken 12 a day from the time he first prescribed it to me. At my last visit, I asked about tapering down since it seems a lot of people on this site have done so. He advised against it. I also asked if I could take 6 pills, 2 times per day, instead of 4 pills, 3 times per day. He also advised against that for various reasons. I trust him implicitly, so I am staying on the 12 per day and am continuing to take them as 4 pills, three times per day. That dose has kept me in remission for the last couple of years, so there is no sense in me rocking the boat.

I would advise you to ask your daughter's Dr. that question. It appears there are different schools of thought out there, and he or she may have an entirely different view of things.
Current Medications:
- Asacol (4 pills, 2x 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)

Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 12/12/2007 9:40 AM (GMT -6)   
make sure she has an annual urinalysis to check for proteins in her urine to make sure kidney function is good while on asacol
ask about taking calcium + vitamin D and also folic acid
other than that I cant stress enough to take pills even if she feels fine or discuss w/GI before making any changes.

Good Luck!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5186
   Posted 12/12/2007 10:47 AM (GMT -6)   
It's still too soon to taper down-- from the symptoms you describe. Depending on the severity of your daughter's UC at diagnosis, though, the gastro may think she should stay on the current dose of Asacol indefinitely. I'm going to bump an online IBD article reference again-- you may want to print a copy to read when you have more time. It's the most current outlook on available meds, but not all doctors are familiar with this as they should be. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

Regular Member

Date Joined Oct 2007
Total Posts : 486
   Posted 12/12/2007 11:36 AM (GMT -6)   
Hi PLEASE. Glad to hear about the dr. appointment. I was just going to post a question to you, asking how things are going.

Here's a small list of things for a first visit:

1) Did your daughter have a colonoscopy? Bring a copy of the report. Also any recent blood tests.
2) Expect that they will take blood. If they don't, I would ask why not.
3) I would ask about rectal meds.
4) I would ask about how to deal with a flare from the very first symptoms. After this quiets down, your daughter should know what to do at the first sign of blood or mucus. It's nice to have a prescription on hand and just know what to do. (At least, I like knowing that.)
5) If your daughter has pain, cramping, or urgency, you could ask what she can take to deal with those symptoms. (The Tylenol question, for example.) Some drugs I've taken in the past have been really benign and help a lot: Immodium, Levsin, Lomotil. The last two are by prescription and help slow motility in the gut.

It sounds like your daughter is on the upswing and getting better. Great news! If the Asacol works for her (which is sounds like it does) taking 12 pills a day is not unusual. Asacol isn't a dangerous drug, so there's no need to taper the dose down. Although, sure, it's a lot of pills to take.

I hope you have a great first meeting with the doctor!
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

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