Returning symptoms

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Meesh
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Date Joined May 2006
Total Posts : 619
   Posted 8/14/2007 6:20 PM (GMT -7)   
Had my first Remicade infusion 7/21 and it was like I was cured. Well, over the weekend I stsrted seeing blood again and this morning I the feelings of severe urgency returned (nearly crapped my pants walking the dogs) so I put a call right in to the GI asking if I should stop the Prednisone taper (I am now alternating 10 mg and 5 mg and tomorrow I was supposed to start alternating 5 mg with 0 mg) and if maybe I should get my next infusion sooner than Sept 1. He called back in agreement and so I am scheduled for this coming Saturday (at the horribly early of 6 am, but at least I won't ruin the day and I can always snooze while it's happening).
 
I hope this one works as well as the first one did! With almost 6 weeks of normalcy I got pretty used to it!
Meesh 

Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07;
Prednisone 4/27/06-present; failed at every taper attempt until Remicade infusion. Currently 10 mg day and successfully tapering; Colazal three 750 mg capsules 3X day; Protonix;
Xanax; Rowesa; Asacol; [2/22/07 started Imuran, off within two weeks due to bad reaction]


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 8/14/2007 6:25 PM (GMT -7)   
Wow, um....I haven't heard of anyone starting the remicade so slowly. Most of us have one infusion, then the second one 2 weeks later, then the 3rd 4 weeks after the 2nd, then every 8 weeks.
Perhaps that's the problem?
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Eighth Remicade infusion End of August


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 8/14/2007 8:22 PM (GMT -7)   
Meesh, I agree with GardenerJames, I'm surprised you have only had one infusion so far. I started right before you and I'm due for my third next week. I was thinking you need those "loading doses" in the beginning. Everything I've read on Remicade recommends infusions at the intervals GardenerJames mentioned. Surprised your GI didn't follow those guidelines. Hope you get back on track soon. Hopefully, once you get your next infusion you can get off the prednisone quickly.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
2nd Remicade infusion


tamtam10
Regular Member


Date Joined Aug 2007
Total Posts : 78
   Posted 8/15/2007 5:59 AM (GMT -7)   
I had my first treatment last thursday and go for my second next tuesday. That is strange that they are having you wait so long inbetween the first few treatments. I hope they work for you. my first treatment was fine but i am still having a lot of my symptoms.
TamTam10
 
Diagnosed with Pan Colitis 2004 (age 23).
Asacol 12 per day
Prednisone, off 2006
6mp 75mg per day (got off becuase I am starting Remicade)
Canasa when needed
Remicade second infusion Aug 21st


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 8/15/2007 6:12 AM (GMT -7)   
Funny, I thought the same thing when I first saw your treatment schedule, but whose to say -- I thought maybe the treatment schedule had changed since I started it as it's such a new med. Also, think about adding a Rowasa enema to get you into remission.

Carol

Remicade - will have my 18th infusion on July 12.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/15/2007 6:30 PM (GMT -7)   
Yeah, I was surprised when he told me 8 weeks rather than 2 and for the life of me I cannot recall his reasoning.

This morning wasn't too bad, and no blood, not much uurgency, just a couple of bathroom trips. I am holding at 10/5 mg of Prednisone and not tapering any further for the time being.

I believe a lot of the symptoms returning has to do with an incredibly stressful week. My daughter, 17 yrs, ran off last Tuesday rather then be taken to a dual assessment (mental health/substance buse) appointment that was recommended by her psychiatrist and therapist. The Detective I was working with advised my husband and me to file a CHINS Petition and seek a Shelter Care Order for her so that when she came home she would be taken to the Less Secure Shelter. She had been out of control for quite some time, coming and going as she pleased and doing a lot of risk taking behaviors and we could not stop her. He told me the CHINS would get the County behind us to re-establish our parental authority over her, and show her, "yes, we are your parents and you cannot sneak out at all hours and smoke and drink and take drugs, we CAN stop you."

So when she finally returned home Saturday night and went straight to bed to sleep off her bender, I called the police and they came and took her to he Shelter, where she has been ever since. That call was the hardest call I have ever made in my life, but she is now getting help and while the weekend was Hell for her, I slept peacefully for the first time in months knowing she wa safe and being taken care of. She is getting better every day, the drugs leaving her system helps, as is the counseling she is receiving at the Shelter.

Today we did the assessment and she will start Day Treatment tomorrow. My husband will pick her up at the Less Secure Shelter (odd name, but that's what it's called) and take her to the program and I will pick her up in the afternoon and return her. I think doing it this way she will be more successful. All she wants now is to come home, while all she wanted before was to leave home. Guess it takes something like this to show a kid just what she had and get her to appreciate it all. Also she's away from her pothhead friends and won't be home until school starts and there's more structure to her days.

Anyway, while we're still in the thick of things, I can see the light at the end of the tunnel and my stomache seems to be settling down, although I am definitely going on Sat for the Remi.

I know I have to figure out ways of coping with stressors before it affects my gut, but it's really tough ... it kind of just happens.

Meesh


Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07;
Prednisone 4/27/06-present; failed at every taper attempt until Remicade infusion. Currently 10 mg day and successfully tapering; Colazal three 750 mg capsules 3X day; Protonix;
Xanax; Rowesa; Asacol; [2/22/07 started Imuran, off within two weeks due to bad reaction]

Post Edited (Meesh) : 8/15/2007 7:36:19 PM (GMT-6)


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/15/2007 6:37 PM (GMT -7)   
Oh wow Meesh. You are sure going through alot. I am so sorry! You hang in there!!!
Tabitha

100mg Azathioprine, 2 Fibercon, Colazal-9 a day (attempting to cut this down to 6 by slowly tapering), acidopholis pearls, just added Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 8/15/2007 6:46 PM (GMT -7)   
Aw Meesh, it sounds like you have a lifeful right now. I can relate, except mine was spousal problems, and even though I was having such tough times, the Remi helped keep my symptoms in check. I hope this is the case for you too, and that the next treatment helps. I'm glad that your daughter is safe and that you are able to get some rest. Take care, and I'm sending all my good thoughts your way for you and your family.
Carol

Remicade - will have my 18th infusion on July 12.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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