Abatacept to Golimumab pt 5

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/1/2008 2:28 AM (GMT -7)   
Ok, quick update. In this case, it looks as if my initial treatment in part 2 of this trial was most likely placebo.

Things have been deteriorating since my last post and have become really bad. A flexi-sig today confirmed the massive degradation of my colon.

We are very sure the initial treatment in part 1 of the trial was drug due to the massive improvement, but sadly, to enter part 2 you get re-randomised.

Ok, well now that we know that part 2 is not working, we have made a request to be re-randomised to "some" level of the drug. Any level should be more effective then salt water.

I get my next sub-dermal injection on Thursday. Have a lot of hopes pinned on this, so I darned well hope it works!
"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;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 7/1/2008 8:36 AM (GMT -7)   
got my fingers crossed for you.... So will you get the drug, since you requested it, or is it still a shot in the dark?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/2/2008 4:02 AM (GMT -7)   
So long as the request is approved, I will defiantly get either 50mL or 100mL of drug.
"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;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/2/2008 8:40 AM (GMT -7)   
Wow, it must be heartbreaking to have something help you so much and then get re-randomized to the placebo! That's why I feel people who take part in these studies are heroes.
 
Hope the new dosage gets you back to where you were; I think you've amply proven that the drug is very effective for you!
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.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/3/2008 8:13 PM (GMT -7)   
Just a quick update. The current randomization of 50 or 100mL of drug was injected yesterday morning. Now I just have to hold out until it starts to kick in. Things have degraded pretty badly and I'm currently sitting between 15 and 22 BMs per 24 hr period.

ETA - 13 days and counting down...
"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;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 466
   Posted 7/8/2008 5:30 AM (GMT -7)   

Hi Severin - I just read your post and wondered how you are doing?  Have you noticed any improvement yet?  Hope so.

Take care

Kam


Abatacept Trial since Feb 2008 (Maintenance Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


AKB
Veteran Member


Date Joined Mar 2006
Total Posts : 992
   Posted 7/8/2008 10:23 AM (GMT -7)   
sending you my best wishes... also noticed you're using garlic capsules-- those destroyed me when I was on them, so just in case you want to start elminating stuff, that would be a good thing to start. Turmeric is MUCH better IMO.

best!
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/8/2008 3:29 PM (GMT -7)   
Severin, what are the actual differences among Remicade, Humira, and Golimumab?
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/8/2008 6:20 PM (GMT -7)   
ComedyDork - The mab set of drugs are all monoclonal antibody's used to inhibit the action of the pro-inflammatory signalling protein TNF-Alpha.

Remicade (Infleximab) was the first one to be approved for use by the FDA and was engineered as a chimeric TNF-Alpha inhibitor using both human and mouse protein sequences.

Humira (Adalimumab) came along after this and does the same thing, but it is constructed from a fully human monoclonal antibody. No mouse, and as such it causes fewer side effects and the chances of your body producing antibodies to it are much reduced.

And now there's Golimumab. This drug is Centocor's answer to Humira. Humira was created by their competitor Abbott Labs. So Golimumab does about the same thing again, is purely human but uses newer learning with regard to building artificial proteins to act on the body. My little brother does this stuff and he seems very impressed by the way it has been engineered. Hence why I am on this one.

And then there is Abatacept which is a completely different line of drug. It works by affecting the way the body signals T-Cells by interfering with the co-stimulation required to actually switch the T-Cell on, though my understanding of this drug is otherwise rather limited.
"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;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/9/2008 11:27 AM (GMT -7)   
Thanks for the explanations, Severin. So since Humira is not a 100% like Remicade, is there still a chance Humira may work even if Remi doesn't work?

p.s For those living in the US, are the clinical trials listed on clinicaltrials.gov pretty accurate? B/c my GI told me that there were no clinical trials going on in our area, but clinicaltrials.gov says that there are a few recruiting (for Humira, Golimumab, and Abtacept!).
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/9/2008 7:15 PM (GMT -7)   
ComedyDork - Yes, thats right.

When your body produces antibodies to Remicade, those antibodies are specific to that particular protein. If you switch to Humira, it is a different protein and as such, not affected by the Remicade antibodies.

There have been a few reports I have read on the net suggesting that patients that do not respond well to Remicade often have a good run with Humira.

You need to check the area you are in, and then check all the hospitals within that area to see if a hospital is running that trial. Not every hospital runs trials.
"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;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.

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