Predisone worries

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/10/2009 11:51 PM (GMT -6)   
I've been on 40mg since getting out of the hospital for this flare 2 weeks ago. I told my doctor I had
muscle pains, extreme exhaustion, severe hunger, and terrible weakness but my flare still isn't under control.
He believes many of my problems are due to the prednisone so he is having me taper - I started yesterday at 35 and then Im supposed to go to 30 next week, and then 25, then 20
and he'll see me again and then I suppose I spend another month getting off of them.

What happens if I start getting really bad as I'm tapering? Will he put it back up, anyone know the next course of treatment? Today with a 5 mg less does, I lost 3 x the blood I normally do.
Diagnosed with Ulcerative Proctitis at 24 years old 1995/ Ulcerative Colitis in 1998.
In remission from 2005 - 3/2009.

Hospitalized for flare 3/2009.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/11/2009 8:05 AM (GMT -6)   

My understanding is that prednisone gets the UC under control and then you use a maintenance medication to stay there.  So, if you are still bleeding that is not controlled you will probably have to go back up.  I went up from 20 mg. to 25 mg. when I found blood again with mucous and hadn't had any at 30 mg.  THEN, started on 6 MP which should kick in about 3 to 6 months for maintenance.

That is my understanding of how it works!  Hope you get yours under control soon.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/11/2009 8:29 AM (GMT -6)   
I don't know what to tell you, but I'm sorry you're feeling so lousy, and I hope something works for you 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 of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/11/2009 8:34 AM (GMT -6)   
Sorry to hear about your condition. Can you call up your doc and ask him. He may advise you to go back to 40 mg and then try to taper off after a week or so. Normally, my doctor used to do that.

Have patience. I am sure you will be able to control. Don't take too much of stress as the stress causes as well as aggravates the flare ups, besides hitting out your immune system.


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."
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/11/2009 9:21 AM (GMT -6)   

Yes, the stress can do more harm than anything.  My NP/doctor both said the stress of losing my Dad surely made my situation worse.  I had to take more Xanax and try to relax. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/11/2009 12:15 PM (GMT -6)   
That is the catch 22 with taking pred, generally as soon as you start to tapper symptoms will return, pred is basically used for short term relief (for extrream cases that just need a bit of a break) it's also used as a booster med to give some relief until the maintenance meds kick in. Pred was great for me (for short term relief) but pred no longer has any affect for me which really bummed me out because I didn't typically get side effects, just the odd mild one like back acne, no moon face or horrid weight gain or anything like that....because it stopped working for me all together I had no choice but to go the natural route which thankfully has given me some relief and best of all no side effects what so ever.

I hope you find relief soon, has he tried you on imuran or asacol as maintenance med?


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 4/11/2009 12:27 PM (GMT -6)   
Because I was put into a trial for Humira a week after hospitalization, I didn't have the same issues tapering off of pred. (I will say that the pred helped a lot-I went from aboug 15 BM/day to about 4 BMs, but still had bleeding) So i am not sure what the next step will be. The humira worked immediately for me after my first injection, and I have been overall pretty good since. But I know my previous doc had mentioned taking pred and getting on immuran, but that immuran took months to take affect.

What I wanted to second was the stress thing. Stress is huge for me, and I have to work hard to control it (my kids can cause my stress level to soar in a matter of moments!). I don't like to take anything I don't have to, so for me acupuncture has been wonderful for stress. Also, yoga is great for stress once your body feels up to it. Maybe even taking some hot baths would ease some of your pain and stress as well. Massage could also be really beneficial for you, and if you look for someone (like my mom) who practices out of their home, it should be less expensive because they won't have overhead costs.

Good luck. I really hope the UC gets under control soon, and I hope all of your pain eases.
Laura
 
33 years old, stay at home mom of 2 girls, ages 3.5 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Canasa suppositories-1000mg nightly for recent flare

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