Are the meds really helping or is it just flare ups between pred doses?

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/6/2008 1:46 PM (GMT -6)   
I am trying to come off pred, down to 5mg 1day 2.5mg the next day.  Every now and then there is a small amount of blood, I think my body is still adjusting to the taper.  I go once or twice a day.
 
I see a lot of people on imuran, 5ASA's etc that still have to take pred for a flare up. 
 
My question is: Are the meds really helping us or is taking the pred for flare ups what is keeping us going.  I am wondering if I am taking the imuran for nothing?  I mean lets say I taper off pred and a few months later I flare up.......I would think the imuran is not doing it's job???
 
 
Anyone know or can you share your thoughts?
Beth, 33 ~ 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. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 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!
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/6/2008 3:09 PM (GMT -6)   
If Imuran or 6MP is successful one should not need prednisone. That would be an indicator that the immuno is doing it's job. If the immuno is not doing its job (as in my case) one will not be able to successfully taper of pred without flaring again. In my case I could taper completely off pred but the symptoms of a flare would return within a couple months of the taper meaning that I never could fully stay in remission with 6MP and meslamine alone.

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


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 10/6/2008 3:58 PM (GMT -6)   
I started to have symptoms again last June when I was completely off Prednisone. I was taking Azathioprine and Salofalk tablets but they didn't seem to help much. I still had cramps and loose stools with blood.
2 weeks ago my GI doctor asked me to stop Aza immediately because my blood work was not good. After stopping it for 1 week my blood work was much better. Then I told her that I felt uncomfortable taking it again because it's the second time I had to stop it because of blood issue. She said she would respect my choice and asked me to try Entocort enema instead. I have posted in another thread that I saw significant improvement after using it for 4 days. So I will stick to it until all my symptoms go away.

I have been flaring for almost 1 year. But I was in remission from January to October 2007. Didn't need any oral med but only Salofalk enema. So there's hope, really.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare till the present.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema/suppository, Salofalk tablets 500mg x 3/day, Entocort enema. Warfarin for my Deep Vein Thrombosis which resulted from diarrheas and dehydration in Feb 2008.
Supplements: Probiotics, Calcium with Vitamin D, Vitamin B Complex, Vitamin C, psyllium capsule (Metamucil) and bee propolis.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 10/6/2008 4:21 PM (GMT -6)   
     This really is a stubborn disease, isn't it?  Like it has a mind of its own.  I saw my GI doctor today.  I've been in this flare since  April and on prednisone for most of the time.  I am now tapered down to 25 mgm.   I am on the 6MP (50 mgm).  Since my blood work came back excellent and my WBC count was 7.1 (highest it has been on the 6MP, usually is 3.5), he upped my dosage to 75 mgm and going to keep a very watchful eye on my WBC's.  Instead of every two months, he wants to track it monthly.  He hopes by doing so, the 6MP and prednisone will help me into remission.  I sure hope so.  I've been on the 6MP for four or five years and it hasn't kept me out of flares.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 10/6/2008 4:30 PM (GMT -6)   
I cant take pred, So far the asacol keeps in pretty much in good shape when it starts to go crazy I add the canasa supp. and up the asacol. works for me knock on wood.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/6/2008 5:17 PM (GMT -6)   
You really have to take it case by case. But my thoughts on your case, which is alot like mine, i think we are only buying time and moderate comfort with prednisone. And over time the prednisone wil lose its effect, then your kind of hosed and need to find another solution. Prednisone has been the only thing that has relieved my flares for me so far. I take the other drugs and yes i dont think they do anything for me so hopefully i would like to get off them in the near future. I hope to remain in remission through diet and natural supplements this time. It will be my first shot at it, i am almost off prednisone still tappering.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
                                         50 Billion CFU's acidopholis&Bifidobacterium daily
2400mg oral asacol                                      Digestive enzymes
15mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
                                                                Multivitamin
Diet:Little/no sugars, fats, carbs, caffine,sugars,yeast. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/6/2008 6:05 PM (GMT -6)   
When I was first dxed, I was put on Asacol (never did prednisone prior to that), and for two years I had no blood, mucous, or regular d. When I stopped the Asacol, within two weeks I was in a full blown flare. In my case, yes the 5-ASA helped. I'm now trying Lialda, along with a bunch of other stuff to get the flare controlled. I have high hopes for the Lialda, but I've noticed that I feel more discomfort when I miss my probiotic doses than my 5-ASAs. This disease is so weird, sometimes it seems to have no rhyme or reason.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)

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