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creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/9/2008 9:22 AM (GMT -6)   
Hello everyone. I was just reading a lot of old posts and they are very informative and helpful.
I had a very bad Kaiser experience recently-41 days of hospital fun and 5 blood transfusions. I've been on prednisone way too long and it makes me crazy when I have to be on higher doses so my doctor is trying to get me off.
 
I just started Remicade. I've had two inpatient doses already and it seems to be working for the most part. I go in for my third dose in two weeks. I was wondering what others have experienced with remicade.
 
Also I have a book called eat right for your blood type. (I'm type O+) It was recomended to me from a girl with chron's and colitis and she said she followed the book and hasn't had a problem in 5 years. Has anyone else heard of this book?
 
Thanks!
Diagnosed in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 30mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
 
 


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 6/9/2008 9:44 AM (GMT -6)   
Hey there. Haven't heard of the book, but I've been on Remicade now for over a year and it is working well for me. Most of what I have heard about Remicade from others is also positive. Good luck with your treatment! tongue
34 year old female, Diagnosed 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 20mg, Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamin, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!


Concerned Wife in WA
Regular Member


Date Joined Jun 2008
Total Posts : 37
   Posted 6/9/2008 12:17 PM (GMT -6)   
Hello,

I too have that book. I know quite a few people who swear by that book. They didn't have anything wrong though. I have been trying to incorporate it with what is allowed with the colitis. DO you have the one that has the diseases in it or the regular one?

Good luck I am getting so confused about food it is driving me crazy. There seems to be a lot of contradiction in some things and foods. But seem to be some steadfast rules. I am learning and have tried to go back and read all the posts relative to diet.
44 y/o Crab Fisherman in Alaska

Diagnosed May 2008
Mesalamine 12 pills daily
Prednisone 40 mg
Oemneprizole

Taking multiple vitamin supplements, lots of omega 3's and Antioxidants


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/9/2008 12:38 PM (GMT -6)   
I've read positive comments on remicade so I'm hoping it will work well for me. Thanks.

I had both and the cook right for your blood type. I returned the one with the dieseases after i read the UC section because i didn't help me too much. and i gave the cook right one to my granny. I keep the little pocket one in my purse at all times, it comes in handy when i'm at the store.

Food is driving me nuts too. I'm on the bland food right now...cream of rice, rice, chicken, salmon, white spelt bread. I'm trying no dairy and my dad has always had a problem with wheat so I'm on a wheat/gluten free diet as well. I'm trying to stay bland while stocking up on foods that are in the eat right for your blood type book. It's really hard and expensive and frustrating though. Slowly when my bodys in better shape I'll start trying to incorperate them into my diet and see how my body takes it. I need to start a food diary though.
Diagnosed in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 30mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/9/2008 5:55 PM (GMT -6)   
I've been on Remicade for a little over two years, and have been well since a month after I started it. Food is a real question for us. Doctors usually tell us to eat whatever we want. I think that's because different foods bother different people. What one person can't eat is fine for others. As an example, some of our members avoid gluten and/or dairy, but my go-to food when I need to firm things up is macaroni and cheese. All you can really do is monitor what bothers you every time you eat it, and avoid those things.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/9/2008 6:22 PM (GMT -6)   
I'm not sure if i really do have a wheat allergy or if i'm fully lactose intolerant but while i'm flared up it's better for me to avoid that stuff and slowly introduce things when i feel it's safe. i think diet has a lot to do with our disease and i highly dislike when doctors say eat whatever. thanks for the info judilyn
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 30mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/9/2008 6:46 PM (GMT -6)   
Diet does seem to have a lot to do with how some of us feel, for sure. But the same diet doesn't help anyone. My doc never says diet doesn't matter, he just says to monitor what bothers you and avoid those things.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


betterdays
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/9/2008 10:19 PM (GMT -6)   
I have really benefitted from Remicade. I was terrifed to start it and it took a lot of convincing from GI doctor. I was so fed up with pred and still so sick I finally caved in.  I am so glad I made the switch.  I did have the experience that it was not until about the fourth week after the first three treatments (does that math add up?) that it started to work. I was disappointed at first but I encourage you to be patient, it may take a few treatments.
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