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leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/15/2010 12:07 PM (GMT -7)   
I have a bad feeling the Remicade is going to be in my future for sure at this point.

My GI had me trying to taper my Prednisone again this week after I saw him Monday.

I've been on 20mg for almost a month. Went to 15mg for a few days, then 10. Soon as I hit 10....BAM. Pain, pain, pain, multiple bathroom trips, and was passing mucus with blood streaks in it again last night. There is SOMETHING in my left side that starts hurting badly as soon I start getting symptoms again....I wish I knew what the heck was going on in there. :(

So yeah, I feel that the Remicade is about my only choice now....I need to get off this stupid Prednisone. It's making me crazy. I haven't slept more than 4 hours a night for 2 months now.
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 5/15/2010 4:12 PM (GMT -7)   
I had a terrible time getting off pred, it took over a year & a couple of re-bound flares. I wouldn't panic at this point, you may be experiencing more pred dependent symptoms than CD activity at this time. Best of luck!

Sincerely,
Matthew

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/15/2010 4:33 PM (GMT -7)   
OMG, I am really starting to freak out now. I am suppose to start pred. and 6mp on Tuesday. I can't go through the whole thing I keep reading about, "Not Sleeping" because I will have severe Panic attacks. This is so horrible because I felt like I have finally hit rock bottom where I am willing to let them start me on steroids so I can stop running to the bathroom 24/7 but now am really starting to freak out. It's bad enough I already suffer from anxiety/panic attacks but for the steroid to make it worse I won't be able to deal with it. After being on the steroids for a certain amount of time the symptoms don't go away?

Sorry to bring my own issues to your post I just got freaked out. I know they want me to start remicaid too but I haven't tried any other medications to help control the crohn's except for asacol and entocort. The entocort actually made me use the bathroom much more and have no control of my bowels but I have heard it has worked really good for others. Have you tried Entocort Ec? Maybe you can ask your doctor about putting you on that so you can taper off the pred.. Even though entocort is a steroid only about 10% goes into the bloodstream while the rest works in your intestines so you don't get the horrible side effects that I hear with pred.. I hope I am explaining this right :-/.................Hope you feel better soon
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 5/15/2010 8:36 PM (GMT -7)   
I know infused drugs are nothing we ever plan for or want but I'm really hoping it will work for you. I only spent 6 months on prednisone (which compared to some isn't long) but I was miserable every second I was on it. In a way I guess I was lucky because I was so sick and had been in the hospital for 3 weeks, so they didn't give me any other options except the Remicade. I think it would have been a harder decision had I not been in the hospital for so long. I found that not knowing what to expect from the remicade was harder than the actual process of the infusions. Sending many good thoughts your way!

Jenn
JAS
 
Currently taking: Remicade


jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 5/15/2010 8:53 PM (GMT -7)   
Also, if you decide to go through with the Remicade and it's an option I would try to find a GI infusion center. My first infusion was done at a regular infusion center where they also administered chemotherapy, osteoporosis drugs, etc. After that I moved to a GI infusion center. I find it much more comforting as everyone there is getting Remicade, they have specialized nurses who have lots of experience with the drug, I take comfort knowing my GI is in the building if something were to go wrong, and it's limited to 3 patients at a time. Sorry if I'm bombarding you with information you don't need,
JAS
 
Currently taking: Remicade


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/15/2010 9:11 PM (GMT -7)   
I've actually been on Entocort, with little result. I wish it had worked for me, it didn't mess with me nearly as much as the pred does. I do sleep, but not really in solid blocks anymore.....like, I sleep some at night, and then try to sneak a nap during the day at some point so I'm functional. It's just hard.

I really am not looking forward to doing the Remicade, but I think it's at the point where I need it. :( Thanks for all the thoughts and well-wishes, I truly appreciate it. :)
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 5/15/2010 10:55 PM (GMT -7)   
I have been getting my remicade every month for the past 6 years in a regular Infusion center and I absolutely love the people I meet there. To be honest, I am grateful for the opportunity to talk to the cancer patients because they are so positive and make me see beyond my own situation. It sometimes helps to see those that are in worse situations than us to make us realize how truly blessed we are despite going through a major personal battle.
As for the remicade situation, that is a big gun med and there are plenty of other smaller medications to try first if you are nervous. Take a deep breath and know that everything will be ok. It is scary at first when you read all of the side effects but realize that not all of those will happen to you and that are thousands of people on it without any issues.

Post Edited (tsitodawg) : 5/16/2010 12:00:37 AM (GMT-6)


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/16/2010 5:24 AM (GMT -7)   
No worries! Everything will be ok!!
Wish you well!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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