Tapering off pred, symptoms coming back....prednisone dependent!?!@#

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mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/16/2009 10:47 AM (GMT -6)   
I started off with 40mg of pred...aside from the typical pred side effects, my flare at the time cleared up pretty quickly....sometimes a symptom or two, but for the most part, it worked out great...

Well, I am down to 10mg now, and back comes the blood, cramps, mucous, and urgency... I am pretty bummed about it because I am now a classic case of prednisone dependent... I honestly would love to just stay on pred - I would rather deal with the side effects than the UC inflammation but according to my doc, it is really rough on the body....

So, I go next week to see another specialist in the Pittsburgh area to look into Remicade. My issue is the non-cancerous tumor I had on my pituitary gland - they are a little cautious in starting me on Remicade.

I am a bit nervous because I am running out of options heading down the path of surgery, which is not somewhere I want to go if it can be avoided.... If I dont have cancer or risk of imminent death, I am going to try to tough it out as long as possible until better treatment comes out or even some cure....I just hope to hang in there.....

It is getting hard to keep positive... I thought since being put on Paxil recently I would have a better advantage since I am much more calm inside - it really helped calm down the prednisone jitters.....but since tapering my UC is hammering back with avengance...and I am pretty pissed....

Just had to rant....
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/16/2009 10:51 AM (GMT -6)   
Well I am sure you would be fine very soon. My good wishes for your speedy recovery are always there and so is my support.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/16/2009 5:54 PM (GMT -6)   
     Has your doctor mentioned trying 6MP before going to Remicade?  I know exactly what you are going through...been there.  Fought my GI doctor about going on the 6MP, but relented five years ago.  Then, last year, I suffered a really bad flare, had to be hospitalized for ten days.  Doc was pushing Remicade.  His associate disagreed with him and so did I.  I was exposed to the TB virus years ago and Remicade could activate the virus and it could actually kill me!  Forget that!  It took me seven months, but I finally achieved remission last Nov 1st...yippeee!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/16/2009 6:31 PM (GMT -6)   
Prednisone has horrible side effects from long-term use, so your doctor is correct in not allowing you to stay on it. However, prednisone also doesn't work long-term. It won't keep patients in remission, it can only help patients achieve remission. At any rate, I hope you improve soon.
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 nightly, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/16/2009 7:05 PM (GMT -6)   
I know how you feel and it sucks! I have pancolitis as well. Have you tried 6mp yet? That's what I'm going to be on soon. I'm so afraid that it's not going to work then it will be on to Remicade. What has made me feel a little better is reading about ppl who have gotten the j-pouch. They all seem happy with their decision. Ugh, I just wish I didn't have to think about it at all - it's not fair!
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


dothu
New Member


Date Joined Nov 2008
Total Posts : 16
   Posted 4/16/2009 7:27 PM (GMT -6)   
I have a similiar story and ended up going to Remicade - and it still took the 5th infusion for me to get to a place where I could go taper off Predisone (starting at 40mg)   -  but now I am off the Prednisone and just on Remicade and Imuran -  I had been on the Predisone for about 14 months and attempted to taper at least 3 times before it worked.   Good Luck - I know it is hard
 

notshure
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/18/2009 11:58 PM (GMT -6)   
can you get disabilty
single father uc for three years
on pred 40 mg
sulfasalazine 4000mg
nexium 80 mg


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/19/2009 9:43 PM (GMT -6)   
Not sure disability is an option for me at this point. I own a company and my absence would cause the company to fail....which would put 6 people out of work, including my wife....which would also be the end of my health coverage....

Gotta stick it out.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"

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