Prednisone Taper-Blood Again!! Now What???

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Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 3/30/2009 7:25 PM (GMT -6)   
I am so frustrated!  I started on Prednisone about a month ago at 20mg.  I was to afraid to go any higher. For the most part 20mg worked.  The blood stopped.  I was only going to the bathroom 3-4 times a day, even though they were still pretty loose it was liveable. 
 
I tapered to 15mg for a week and things were still going ok.  Well..last Thursday I went to 10mg and now all heck is breaking loose again.  I started seeing a little blood again today. 
 
I am so frustrated!  I go back to the doctor on Wednesday.  Has anyone experienced this during a taper?  Any idea what to expect when I go back to the doctor?  I'm afraid the option is to increase the prednisone again.  I was so hoping to be off the prednisone before our trip in 10 days. 
 
I am tired and frustrated.  Anxiety is becoming a problem now too.  The thought of driving in a car terrifies me if I'm not going to be at my destination within a few minutes.  I won't take my daughter to a movie without another adult with me.  I don't want to drag her to the bathroom in the middle of a movie. 
 
How do you deal with the anxiety of all this?  I was only diagnosed in February (started having problems in January though) so I haven't been at this that long.  I see so many of you that have been at this so many years.  How in the world do you cope? 
 
Any advice about the prednisone taper and anxiety would really be appreciated tonight.  Depression setting in tonight! 
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Prednisone 15 mg - Tapering
Rowasa
Multivitamin


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/30/2009 7:27 PM (GMT -6)   
When I started on pred, I asked my doctor about starting on 20mg instead of 40mg. He said that starting on 20mg would probably make the symptoms go away while I was on it, but when I started to taper below that, the symptoms would be more likely to come back than if I just started at 40mg and went from there. He said that the 20mg is enough to keep the inflammation under control and reduce symptoms, but usually isn't enough to really heal things up.
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 of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/30/2009 7:51 PM (GMT -6)   
I agree with fruitgirl, from personal experience, it makes sense. I tried to start at 20 and got down to 10, but then flared even worse so went to 30. I was bummed, but I wanted to get healed. I think you might need to just bite the bullet and not try to get off it before your trip, if you want to get it under control.

You will learn to manage. It can be very inconvenient, and you might decide some activities are not worth the anxiety. Do what you need to do to give yourself peace.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 3/30/2009 7:58 PM (GMT -6)   
I guess if I have to increase it I will. I hate this drug and how it makes me feel. I wish there was another option besides it. I know it is silly but I dread gaining weight. I have spent the last year losing weight. I was extremely overweight, lost 70 pounds and finally hit my goal about 6 monhs ago. The thought of gaining weight back is so depressing, which obviously doesn't help matters.

I try to decide what activities I can do and can't do. The problem is the family understanding. It's hard to explain to my 8 year old.
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Prednisone 15 mg - Tapering
Rowasa
Multivitamin


aned
Regular Member


Date Joined Mar 2009
Total Posts : 105
   Posted 3/30/2009 8:06 PM (GMT -6)   
I was recently diagnosed as well and I understand your frustration and your fear of Prednisone. I also have four kids at home so I know what you mean about it being hard for them to understand. It just seems like such a complicated disease....with no clear answers. Taking care of yourself is the best thing you can do for your daughter though.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/30/2009 8:09 PM (GMT -6)   
I have had some luck keeping the weight gain minimized (but not the hunger! Insatiable) by eating low or no carbohydrates (like Atkins). With that diet, you can eat more and even lose weight, as you may know!

I know how you feel, it makes me so mad, I had just lost about 15 lbs. but now I have to do what I have to do.

Congrats on the weight loss, that is not easy! This is just blip, you'll get back on track.
Have you tried probiotics? They might help.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 3/30/2009 8:24 PM (GMT -6)   
Haven't really tried probiotics. I wouldn't even know where to start with those. Which ones, how much, etc.
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Prednisone 15 mg - Tapering
Rowasa
Multivitamin


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 3/30/2009 11:08 PM (GMT -6)   
Dear Risan
Do not take too much of stress. Try some meditation or yoga as the stress prolongs the healing process and hits the immune system hard. In so far as pred is concerned, try to get back to 20 mg and instead of weekly tapering by 5 mg, taper it once in a fortnight. I am sure that would help. Try some alternate/natural cures too. I tried ayurvedic Boswalia/Sallaki and fresh grown turmeric and lots of people on this forum have also been benefitted by that. Infact in the intial stages of UC it is quite effective cure. Yuckygut and Saposs on this forum have tried it. So far as weight gain is concerned, these are side effects of Pred as there is water retention and this goes off once you start tapering off.
45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery
"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."
 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 3/30/2009 11:10 PM (GMT -6)   
Consult your doctor to give you some mild anti depressants. I was being given Anxit/librium/equirex. It depends upon your constitution and doctor so please consult him and then go as per his advice.
45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery
"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."
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/30/2009 11:15 PM (GMT -6)   
Risan1808 said...
Haven't really tried probiotics. I wouldn't even know where to start with those. Which ones, how much, etc.


Hi Risan1808,

You can get Probiotics at the drug store. Make sure you get Probiotics and not Prebiotics. Look at the ingredients. More variants, more bacteria, more pills in the bottle, and lower the price, the better.

I take one a day. Some people take more.

Please note: it is normal for the blood to return when tapering off Prednisone, because your body produces less Cortisol when you are on Prednisone. It takes awhile for the body to increase its production of Cortisol. Give it some time.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 3/30/2009 11:19:43 PM (GMT-6)

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