Steroids/Immunosupressives?

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abseeley
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/15/2009 6:15 PM (GMT -7)   
Hey everyone havn't posted here in a while, I've been taking 5ASA's (mezavant, mesalamine...) for about a year now, the only downside is it actually gives me the big D, ironic really... My doctor thinks he is severely under treating me and if I just say the word he can put me on something stronger. We discussed immunosupressive drugs, and I realize there is a great risk of innumerable side effects, including cancer. On the other hand im seriously considering starting a steroid regiment, but ive been trying to put that off for as long as possible because of all of its side effects.
?
HW please help me decide with your past experiences what should I do? And how does a steroidal regiment work exactly? I know you just cant take them forever, they would destroy your body, so you take them, then you get weened off, when do you go back on them? when you flare? please help!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/15/2009 6:29 PM (GMT -7)   
Hi When I was on prednisone I stayed on it for about 14 months .Quite that was a few years ago the sideeffects were bothering me like bad gerd and heartburn. I eventually ended up with surgery. I have had a few quick burst of prednisone for a week and that helped some. I did have some mucus problems, but it still comes and goes.I guess for me when I started the steriod I was having blockages.Hope this helps some.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~Blessed are they that have the joy of helping others~ Moderator gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/15/2009 6:43 PM (GMT -7)   
I've been on prednisone since last May, but am finally weaning off now that things are starting to genuinely improve. You may only have to be on it for a short time, but it depends on the person and symptoms.
They never seemed to make me any more vulnerable to sickness honestly. Neither has humira yet, and I have been on that since last September (started working wonders after 4-6 months).

Honestly, I know some people hate prednisone with a passion, but it has really helped me live a normal life and get rid of D. I couldn't walk or really function at all for several months then started taking 40 mg after diagnosis and was able to go out and eat that very day.

I know I say it a lot everywhere else, but you're not going to know until you try it. If you don't like what it is doing to it then you can always work it out with your doctor to quit. I highly recommend trying it though.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 6/16/2009 7:42 AM (GMT -7)   
Well steroids are to induce remission, like spraying water to put out the fire. Immunosuppressants are designed to maintain the remission -- hence the term maintenance drug. And the side effects, while real, are usually pretty minimal for most people and much preferred to a perpetual flare.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/16/2009 7:47 AM (GMT -7)   
I agree 100% with MikeB. I think you really should look at the immunesuppressants, they are the best if you want to achieve remission and stay in remission.

Big hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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"*

abseeley
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/16/2009 5:07 PM (GMT -7)   
thanks for all the tips guys, im moving out of my home and into an apartment in august to go to university (im 19) so thats going to be very anxiety/stress provoking for me meaning bad news for crohns, so im thinking that would be a good time to try the steroids, and once i can kinda get into remission I can start immuno.

no ones ever really explained it like that before :) i like the fire metaphor, its quite suiting as some days it really seems like i've eaten some smoldering death :P

much love cronnies
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