Abatacept to Golimumab pt 3

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/2/2008 12:43 AM (GMT -6)   
The thrilling story so far:
I exited the Abatacept trial as, although it did help me get from 50mg of pred down to 0, it was unable to do much more then that at the dosage it was provided and the frequency in which it was administered. I and my GI then signed up to the Golimumab trial. A monoclonal antibody that blocks TNF-a.
Prelim work was done. This included a chest x-ray, a few pints of blood, tb scratch test, a urine and poop test, and last but not least, a flexi-sig, all of which I passed and got phone call Monday 28th April to let me know all was good to go.

So, up to the present:
Well, yesterday (1st of May) at 8am, I turned up at the hospital to complete the final samples required to begin this trial. Had to do another heap of bloods and a stool sample. Once that was done, just had to sit back and wait for the drug (or placebo) to arrive.

12:30 in the afternoon, the "mystery liquid" arrives and I get taken to the infusion room. Off we go!

Ok, so they fed me lunch while I was receiving my infusion, so that was rather nice. Roast chicken with vegies, covered in lovely salty gravy! Yumm :-)

Then the post infusion observation started - can anyone say "marathon"? So yes, 3 hours later, and after another set of post infusion blood tests, its all done and off I go home.

At the time I am writing this, its been exactly 24 hours since the infusion observations finished and I walked out of the hospital.

Maybe I am dreaming and its just wishful thinking, but by body has been rather well behaved today... Ah well, not gunna say anything till I am sure.

Will post again on Tuesday 6th of May... My GI recons I will have a pretty good idea if its working by then...
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/2/2008 2:53 AM (GMT -6)   
Good luck, Severin. I really hope it works for you.

I.
Co-Moderator Crohn's Forum.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/2/2008 7:04 AM (GMT -6)   
Thanks for the update!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/2/2008 8:34 AM (GMT -6)   
how often are you going to get the infusions? and is it dependent on scope results & such, like the last trial you were in? Well, I hope it works great for you!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/2/2008 9:11 AM (GMT -6)   
I hope that this is the one that works for you! Thanks for the update.
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


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 5/2/2008 1:21 PM (GMT -6)   
that is great!! what happens if it works for you, how to you get to keep on taking it if it's still in the approval stages......just a question I have always wondered about.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/3/2008 7:18 PM (GMT -6)   
Eva Lou - I get one infusion that has to last 6 weeks in this first part. After that, it depends on how I react to it and if I was receiving placebo as to what dosage I get from there. I believe the infusions also move to monthly at this stage.

Beth75 - The deal with most trials is that if you participate and put up with all the prodding and poking, that the company will continue to pay for and supply your dose of the medication until it has been approved.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Currently part of the Golimumab trial;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 5/5/2008 7:14 AM (GMT -6)   
Oh I hope this one works well for you! Good luck.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/6/2008 7:26 PM (GMT -6)   
Ok - quick update:
Its been 6 days and thus far, there has been no percievable change... Whats the bet my extremely average luck has landed me with the placebo... again :-/

Will update again in another few days. See what happens I spose.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Currently part of the Golimumab trial;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/7/2008 1:49 AM (GMT -6)   
Is there a chance you can be re-randomised to the real drug, even if you do have the placebo this time?

I.
Co-Moderator Crohn's Forum.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/7/2008 9:50 PM (GMT -6)   
ivy6 - Yes, after the initial 6 week part of the trial, I will be re-randomised for the 2nd part. If I am currently on placebo, I will definitely be given drug. If I am currently on a low dose and it either isn't working or is not working well, I will be given a higher dose. If I am on placebo and improve, then I will be booted out of the trial (go figure).

Last night, things suddenly got much better. I am wondering if I had somehow picked up the gastro bug that is currently making its way around Brisbane... Anyway, last night was a rather sudden improvement on the past few days. Not holding my breath yet. Once I actually sleep right through the night without having to get up and go to the toilet 12 times, THEN I'll be sure its working... :-)
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/8/2008 4:41 AM (GMT -6)   
That sounds promising, Severin. I'll keep my fingers crossed for you! And it's good to know you still have a chance of getting the drug in the future, even if you're not getting it right now.

Sending lots of healing vibes your way,

I.
Co-Moderator Crohn's Forum.

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