making steps to a second opinion

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/24/2008 11:15 AM (GMT -6)   
I am getting all my ducks in a row and just requested copies of my medical records this am to go to the Chron's and Colitis Center in Boston.  I will pick them up, make copies for myself and send them to C&C.
 
I don't know why it has taken me so long, but I really feel like right now with everything that is going on it is key for me to go.  I am sending my Kidney records along with them, since some of the meds to treat me are the same and my primary care records too.  I did not think they needed my OB/GYN ones.......
 
I hope I get there in time before my Doc's want to switch me to Cellcept from Imuran b/c timing wise, I would like to ask them first and also don't want to put Cellcept on hold a couple of months if I have to.........just want to get on w/my life.
 
What do y'all think of staying on a 5 to 10mg of pred for an additional few months to keep me from flaring?  I will discuss w/my Doc's of course but just in case, there really is no guarantee and if I can avoid a flare on a low dose of pred then to me what the heck is a few more months????
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 7/24/2008 4:02 PM (GMT -6)   
Hey.. good luck. I don't see anything wrong with a few more mths of a low dose of Pred if it is what makes you comfortable. :O)
Jenn 26/female
Ulcerative PANCOLITIS diagnosed 2004
Asacol 3 pills once/day
Daily Vitamin for Women and Folic Acid
Flare March-June 2008.. pretty much in remission again July


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/24/2008 6:53 PM (GMT -6)   
Beth,
 
I don't know how long you have been on pred but if it's been a long time and if you have flared after several attempts to wean off of it, it is probably best to stay on as low as dose you can until you see the 2nd opinion doctors. 
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/25/2008 10:59 AM (GMT -6)   
Sept will be one year for me on pred, though I did get down to 5mg for a while and flared up I think b/c of taking aspirin and just recently went up to 40mg and now am down to 25mg. I think i'd like to stay on it the first couple of months w/Cellcept just to be sure and if the cellcept does not work at least I wont flare (hopefully).
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 7/28/2008 5:30 PM (GMT -6)   
I'd say get your 2nd opinion appointment set up so that you can see a timeframe for tapering the Pred down from 25 mg. (Maybe to 10 mg-- if you feel secure with that.) Keep us posted. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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