I can't get off of prednizone

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Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 3:25 PM (GMT -7)   
I have crohn's, and I've been on prednizone continously since august. I have violent flare ups which causes me to increase my dosage to 60 mg per day. Now my crohn's don't respond to it effectively. Is there any effective remission promoting drug? I heard of remicade. Is it insurance friendly? Or does the insurance companies want you to be hospitalized in order to pay for it?

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/10/2009 3:55 PM (GMT -7)   
Welcome Benisone, I'm glad you found us, but sorry that you have to be here.

There's enough info on this site to over-load anyone, so please take advantage of the "search" options to find out answers while you wait for responses... keywords like prednisone will pull up previous rants, raves, and questions.

Prednisone is known as the drug we all "love to hate", so to speak. I've never been on 60mg for more than a week or two, so hopefully someone will come along with more experience there.

As far as the Remicade, every insurance is different. The past 3 insurance carriers that I've used treat it as an "out-patient procedure" that usually requires pre-authorization. Remicade is such an expensive drug though, that the insurance companies have always given me fits about paying for it. IN the end, though, they do pay for it. The real cruddy thing is that even if your "copay" is only 20% or something, that's still A LOT of money out of pocket. To help with those costs there are several Patient Assistance Programs to help. I found a lot of help with the Patient Access Network Foundation, but that's just one of many.

Welcome again, Beni!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 4:04 PM (GMT -7)   

 

     Thanks patientspider, I am looking forward for helpful responses from the crohn's community, regards...Ben.

     p.s. It's good to be aboard.

 

 

 

 

patientspiders said...
Welcome Benisone, I'm glad you found us, but sorry that you have to be here.

There's enough info on this site to over-load anyone, so please take advantage of the "search" options to find out answers while you wait for responses... keywords like prednisone will pull up previous rants, raves, and questions.

Prednisone is known as the drug we all "love to hate", so to speak. I've never been on 60mg for more than a week or two, so hopefully someone will come along with more experience there.

As far as the Remicade, every insurance is different. The past 3 insurance carriers that I've used treat it as an "out-patient procedure" that usually requires pre-authorization. Remicade is such an expensive drug though, that the insurance companies have always given me fits about paying for it. IN the end, though, they do pay for it. The real cruddy thing is that even if your "copay" is only 20% or something, that's still A LOT of money out of pocket. To help with those costs there are several Patient Assistance Programs to help. I found a lot of help with the Patient Access Network Foundation, but that's just one of many.

Welcome again, Beni!


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/10/2009 5:41 PM (GMT -7)   
Welcome Ben,
Sorry you have to be here but this forum is great for advice and compassion. Dont be afraid to ask anything, there are a lot of well informed people on here.
I know what you mean about the dreaded pred - this is my sixth year in a row of being stuck on the pred, at high and low doses, hopefully this is the year I can finally wean myself off - anyway...
Take care
Jo

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/10/2009 6:25 PM (GMT -7)   
I can relate! I've been on and off of it since last May though I never go higher than 40 mg and am usually able to taper off. Being off of it has never lasted more than a month or two however.
There was a point where even the 40 mg(I am a tiny person...) did nothing so I had to have the steroids given via IV. This helped jumpstart everything so to speak. I was then put on the tablet form again about a week later and it made all the difference!
It took the ER trip but ultimately things are beginning to improve.
Are you on any other medication?
Staying on pentasa, probiotics, and possibly humira(too soon to tell with this one) has helped me tremendously.
I hope you're able to find the right solution...just don't hesitate to go into the ER if things get too severe! I've almost died twice from being to stubborn to go in.
In any case, keep posting, keep us updated, and feel free to ask any questions or simply vent. This is a wonderful place to get things off of your chest. Support is NEVER in short supply.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 7:25 PM (GMT -7)   

   Thank you all for your kind replies. I am only on preds, now at 60mg. I can't ween to 30mg or I'll have a flare up. So I am trying inquire about remicade so I can ween myself off of preds. I am afraid of the high cost of remicade, in which prednisone comes completely affordable like $10 dollars per bottle. That's it has been my drug of choice, cheap and effective, but I am now a "pred junkie"...regards, Ben


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/10/2009 7:49 PM (GMT -7)   
I can see the temptation of the cheap bottle, but the high price of medical problems induced by long term usage of prednisone will can be much worse than the price of remicade, which you can find assistance programs for. I hope you find something else you can take..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/10/2009 8:56 PM (GMT -7)   
Prednisone is not a good long-haul drug, although there are a lot of people who have no other options. Remicade is one option, but there are lots of others. Have you thought about drugs like Purinethol, or 6mp, Pentasa, etc? Remicade is far from the only route.

When I taper off of Prednisone, I have to taper town 5mg per week, if not slower. So, if I start week 1 at 60mg, then I do week 2 at 55, week 3 at 50, etc. Then, when I get into the really low doses I slow down even more... I have my doc order pred tablets in 5mg pill, and then I cut THOSE in half for weeks at a time. It's slow, and tedious, but it's the only way I know how to do it.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 9:10 PM (GMT -7)   
There's my problem I try to taper to rapid, ie; 1 week 60, 2 week 50, 3 week 40 etc. My body responds accordingly and I usally end up on high dosage...pentasa did not do it for me. I ts mode of acttion was to release little time capsules into lining and work. I did'nt feel it was as effective as prednisone mg per mg... 

Post Edited (BENISONE) : 1/10/2009 9:19:11 PM (GMT-7)


dangdonkey
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 1/10/2009 9:16 PM (GMT -7)   
Ben, have you tried decreasing in 5 mg steps?
You really need to be careful with roids. Like others have mentioned long term can have adverse effects.
Best of luck and welcome.

Brian

Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 9:27 PM (GMT -7)   
No...but I will now, back on 60, but I need to control my crohn's so I will try everything it takes. I worried about my osteo depletion, have some cracked teeth to show for it. I am 46 years old been dx at 18 and prednisone has been my main treatment.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/10/2009 9:28 PM (GMT -7)   
Do you mind if I ask how long you stayed on pentasa? I only ask because it actually made me worse when I started it. It took a few months and then finally kicked in and made a pretty big difference.

I agree with the others on the 5 mg taper. It seems to work much better. Every time I have tried going down by 10 mg I went right back into a flare.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/10/2009 9:45 PM (GMT -7)   
A month the most, if I needed to stay on it longer I would'nt stopped, but how can I tranfer my wellness that prednisone established and start pentasa, almost impossible, need to take them both until one or the other supercedes the other one...can I be expressive, I am passing gas freely, and 24 hours ago I was longing for such an occurrance. I take that as a good sign. My appetite is up and I can't wait to make french toast dipped in "ensure"...

Post Edited (BENISONE) : 1/10/2009 9:56:50 PM (GMT-7)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/10/2009 10:38 PM (GMT -7)   
I was just asking based on personal experiences. I had to stay on it for two or three months before anything happened...
It's just that prednisone can damage you so badly in the long run, and I would hate to see any of its bad side effects overtake you :(
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/11/2009 9:17 AM (GMT -7)   
Why not try adding 6mp or Imuran to the mix now as you taper down Pred it would give time for 6mp or Imuran time to kick in? Just a thought.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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