1st Remicade infusion....

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Numb78
Regular Member


Date Joined Sep 2007
Total Posts : 63
   Posted 5/22/2008 2:54 PM (GMT -6)   
Hello all... I had my first Remicade infusion yesterday. I don't really feel any different yet but I did manage to sleep a good 7 hours last night which is very rare for me lately. I've got my fingers crossed that the Remi will be my wonder drug and start to kick in soon. I've got my next loading does in 2 weeks. I don't know how much longer I can handle this flare up!
29 year old male, diagnosed after bad flare in Summer 2005, quickly brought into remission by pred and salofalk. 2 years symptom free after that!!
Currently in a flare since summer 07 - I desperately miss remission!!!

Current Meds: finally off Pred (after months of 40mg), 2000mg salofalk, calcium supplements, Pantoloc, Buscopan, Clonazopam, Cortenema
Started 100mg Imuran Jan 15/08 - no noticeable effect yet... aside from nausea, vomiting, fatigue...

Post Edited (Numb78) : 5/22/2008 1:57:41 PM (GMT-6)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/22/2008 3:24 PM (GMT -6)   
Good luck! I hope it works for you :) I've been trying to get a doctor to let me give it a try but they all seem hesitant. Hopefully my new one here in Florida will. They're all hung up on the potential risks but then they go and put us on prednisone over and over!! Duh!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


maggiern
Regular Member


Date Joined Mar 2008
Total Posts : 230
   Posted 5/22/2008 4:06 PM (GMT -6)   
I am on prednisone, Imuran, and Remicade.  I started Remi in November of 2007 and did not feel any changes until December.  I am having increased problems so they took blood test to see if I am having any inflamation change in my labs.  The doctor will now increase my dose to 5mg per kg of the Remicade they do not go over 7mg per kg.  That is what she told me.  I tried to get off the prednisone because of my increased weight and it did not work.  The main goal from Remi is to get us off the prednisone.  I learned that at a seminar.  I hope it helps you as much as it has me and just minimal changes to my dose will help.  I thank the Lord everyday for the Remi.  Good luck, hang in there. yeah

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/22/2008 4:19 PM (GMT -6)   
Maggie, most GI's start at 5 mg. per kg. of Remi, and the increased dosage is 10. I've never heard of anyone prescribing less then 5mg/kg. Perhaps that's why your results aren't as good as you would like.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
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.


snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/22/2008 4:58 PM (GMT -6)   
Hang in there.  I really noticed I was getting better after the third.

40 yrs young
dx UC (pancolitis) Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/22/2008 5:14 PM (GMT -6)   
It took me several months to feel the improvement, I probably would have given up on it if I didn't have a sigmoidoscopy after 3 months on it and I saw the huge improvement. A one inch ulcer had closed to about 1/4 inch, I had no idea! A few months later I started feeling much better. Good luck to you!
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 5/27/2008 9:41 AM (GMT -6)   
Hi  all,  I'm a mom who has a son, 40, who has ulcerative colitis in his entire colon.  He has been on Asacol, and Purenithol and during flares, prednisone.  He lately has nothing but lots of mucous and wants to try remicade.  I'm afraid of the side effects.  Will it at least stop the mucousy runs to the potty so frequently.  Do the bowels bulk up and look more normal and less of them?   This is such a nasty disease and I feel for all of you.  I pray there is a cure soon.  He has been to 4 different doctors and no one ever gave him any different medicine to try that you all talk about. I never see where anyone here has taken Purenithol.  It is a low dose Chemo drug to prevent cancer.
My husband also has colitis and he too takes it.  I'd appreciate some more info on the Remicade to ease my mind.  Oh, one more thing, he has no health insurance, no one will accept him. How expensive is this Remicade treatments.  Thanks

AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 5/27/2008 10:37 AM (GMT -6)   
Yes, the Remicade helps but it isn't instant. The drug itself takes about 7 days to feel any effect at all. There are side effects like feeling achy and such. But it does work and it is far fewer side effects than Prednisone. It took me a a few treatments to feel much better. It does help the stools, frequency, blood, etc.

33 year old female
Dx'd 4 years ago
Indeterminate Colitis, probably UC; precancerous polyps
Tried all meds including 6MP,Prednisone
Current Meds: Remicade, Prevacid, Lialda, Lexapro, Synthroid, Iron, vitamin, Fish Oil


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 5/27/2008 9:04 PM (GMT -6)   
Hi and welcome cra43. I believe Purenithol is (mercaptopurine or what we all call 6MP). My 9 year old daughter takes it and my 16 year old takes a related drug called Imuran (azathiopine).

I'm sorry that you, too have two loved ones with this nasty disease! So far my two have not been offered Remicade (thankfully they are both in remission right now)!

Again, welcome!
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 5/28/2008 10:02 AM (GMT -6)   
Thank you Julie. You know how a mom feels when watching your kids suffer. My son is 40 but he is still my "Kid" and he now lives with us, thank goodness. That way I can keep an eye on him help him through his flares. It is awful your kids are so young for this. My son didn't get it till he was 34, just out of the blue. My husband got it at 26. I pray for a cure everyday for all who have to deal with this.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/28/2008 10:20 AM (GMT -6)   
cra43; if you go to the Remicade site, I believe they offer help to offset the costs of Remicade. The pharmacuetical company is called Centacor.

Carol

Remicade - will have my 22nd infusion on May 5.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 5/28/2008 11:05 AM (GMT -6)   
Thanks for that info Carol. I'll check it out
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