First Remicade Treatment

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JohnIII
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 8/2/2009 1:03 PM (GMT -6)   
I went Friday for my first Remicade treatment. It took from 2:00pm Till 7:30pm to to get all 700ml though IV. All went well and only had a slight headache afterward. It's Sunday and I feel better then I have in months. Boy I hope this works what a diffeance it's made. Still in bathroom every couple hours buts thats better then every 20 minutes. Next treatment in two weeks. Thank You all for your encouraging words and prayers.

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/2/2009 3:48 PM (GMT -6)   
that's awesome John... I'm so glad it's helping you! It's helping me too.. I started on thurs. I was wondering... have you lost any weight? I've already lost 8 pounds since thurs... wondering if that's pred weight droppin.. or if it could be Remicade.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/2/2009 4:12 PM (GMT -6)   
Good to know that remicade's helping you. Hope it keeps getting better.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


jmyhny
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 8/2/2009 5:52 PM (GMT -6)   
Hi John
 
I might have to go through the Remicade treatment, could you give me any details about it?  I really don't know much about it.  That is good that yours is going well.

Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/2/2009 6:33 PM (GMT -6)   
I am starting my first Remicade treatment on Wednesday.  I just tapered myself off the Prednisone last week. I couldn't deal with the side effects another day.  In a matter of days I am already a prisoner of the bathroom.  I really hope this Remicade is the anwer.

DDR11
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/3/2009 4:54 PM (GMT -6)   
I am going tomorrow to get all my tests, TB, Blood and Xray's. I am just so tired of the constant flare. I am scared of the risks of Remicade...I had a sarcoma in my arm years ago and am worried about the cancer side effects. It's bad when you are weighing quality of life with the potential of developing something else. Is it worth the risk? Please let me know how you are doing on Remicade and side effects you might have?
Have had UC since 1998.  Experienced first flare shortly after the birth of my oldest son.
Age: 36
Mother of two wonderful sons, two stepsons and a beautiful stepdaughter.
 
Current Meds:
Prednisone:  27.5mg
Imuran:  100mg
Rowasa: Nightly
Asocol:  3600mg/day
 
Natural Remedies:
Lacto-Flam-x - Probiotic
Glutegenics - Gastro Intestinal Support
Endafen - Gastro Intestinal Support
Cal Apitate - Calcium Supplement
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 8/3/2009 8:26 PM (GMT -6)   
Remi worked for us, but not fully till the 5th treatment, and even then we had to adjust the dose upward. No other side affects to speak of. Easy compared to the other stuff we've been through. Weight was stable. Probably the Pred taper or just an appetite thing. Mention it to your doc. i hope it works forever--she is eating everything, only 1-2 well formed stools per day, and for now, living life.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


Imac Girl
Regular Member


Date Joined Aug 2009
Total Posts : 61
   Posted 8/6/2009 8:30 AM (GMT -6)   
Hi all

I am new to this forum and to Ulcerative colitis in general. I was just diagnosed 2 weeks ago. I have had problems for the last few years, but have put it down to having my two girls so close together and post baby problem etc.

I had a colonoscopy on a Friday, just less than 2 weeks ago and was told I had UC in my rectum and the bottom of colon.
I was sent home with Asacolon and predinsone and told to give it two weeks. I got worse over the weekend and on Tuesday ended up in A&E. I was sent home, but went to see my GI the next day who insisted on putting me in hospital.
I was brought in this day last week and have been on IV steroids and Asacolon, but I have just got worse.
I have not had any food or drink other that water since Saturday either, so I am on a feeding tube.
So I am now sitting here having my first treatment of Remicade. All seems to be going well, no side affects as of yet. They said I may get none this time but there may be some the next time.

They are trying to decided at the moment what to do about eating. They may let me have something today, but I might have to wait till the morning. Oh what I'd give to just have a slice of toast.

So I will keep you filled in on my progress.

I am delighted to read the good reports on here and really hope I will be adding to them over the next few months.

Imac Girl

Imac Girl
Regular Member


Date Joined Aug 2009
Total Posts : 61
   Posted 8/7/2009 3:50 AM (GMT -6)   
Well things seem to be going good.
Had my first treatment yesterday and have gone out to every 3-4 hours which for me is fantastic.
I am still on the feeding tube and will be for about 3 weeks, but i will be able to eat some toast today and maybe a yogurt later.

I feel mentally better today to.

If all keeps going like this I will be going home on Sunday. Can't wait to be at home in my own bed with my kids

Will keep you all informed

IG

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 8/7/2009 6:23 AM (GMT -6)   
Hi Imac

I am glad you have found the right thread to provide support on Infliximab/Remicade. I am equally delighted to know that you are doing well after your first shot of Remicade. I will keep you in my prayers and thoughts.
Keep us informed.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/8/2009 8:25 AM (GMT -6)   
I had my first Remicade infusion on August 5th.  No reactions while they were giving it to me . I was nervous I would have an allergic reation.  The following day I felt a little flu-like.  Is this normal?  Also felt very tired.  Today I am feeling better.  My UC doesn't seem any better. How many treatments until I see an improvement with my UC?  Thanks.

Imac Girl
Regular Member


Date Joined Aug 2009
Total Posts : 61
   Posted 8/9/2009 3:52 PM (GMT -6)   
Boxermom,

I had my first treatment on the 6th, so today is day 3 and I am really only starting to come right now. I have a bit of a runny nose, and the yesterday I felt terrible. I was sore all over and so tired. I was still in hospital, so I put it down to the hospital beds and not sleeping properly. I came home today after 10 in hospital and the Remi seems to be working. my stools are starting to firm up and I have been getting between 5 and 6 hours between trips to the toilet, which considering before it i was in the toilet 4 to 5 times an hour.
I am still on the feeding tube, cause my weight had drop so low and I am on steroids to, but only for a few more days, just have to wean myself off them. I am still taking the Asacolon too. I have to go back to the hospital tomorrow to see the dietian and make the appointment for my next infusion, but other than that I think this may have worked for me.

Hope things start to look up for you soon.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/9/2009 5:23 PM (GMT -6)   
I'm doing great on Remicade, and it put me in remission for the first time, immediately. I am thrilled!

Kara, I wish it made me lose some weight...but no changes there. I bet it is prednisone weight, water weight, going that fast.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/9/2009 6:12 PM (GMT -6)   
It has been four days since the Remicade infusion.  Still no change.  I was in the bathroom so much yesterday and last night I am six pounds lighter today.  I really hope it starts working for me.  Maybe after the second infusion.  I upped my Asacol to 12 a day and started the Rowasa enemas again.  I can't keep them in so I have been using half.  I am so tired of being sick.  Been flaring since December and just tapered off the Prednisone.  I am just so scared of the Remicade.  I have been trying not to read too much about it for fear I will stop getting it. 
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