My 3rd Abatacept Trial Infusion Report

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 478
   Posted 3/20/2008 8:34 AM (GMT -6)   
Hello all
 
I had my 3rd infusion on Tuesday, and, touch wood, I think it is working.  My average number of BMs is down from 7 a day to around 3. And no blood. It is amazing.
Even Remicade never did this for me. I still can't believe it. I have been sick for soooo long. I just hope it lasts...
 
The infusion itself was a disaster for the 2nd time in a row. I wish they would train NHS nurses how to operate an infusion pump, it would save me having to wait for 2 hours while they messed around with it, only to break it, lol.  Took several attempts to get the IV needle in which REALLY hurt.
 
Its strange, after my 1st infusion I got BAD neck pains. After my 2nd I was fine (which led me to think I must have placebo). And now the pain is back. Weird.
 
I hate having to take a stool sample for every infusion, but its a small price to pay if it means I will get into remission for the first time in 5 years.
 
Finally, my thoughts on the Abatacept trial itself. I think it is flawed. You are not allowed to take ANY rectal meds, whatsoever (I think due to the  fact they use flex sig to assess your response) -  for the whole 2 year trial.  That is just plain silly.  To get onto this trial, you must have refractory UC that has not responded adequately to all conventional meds. So, you would be a "difficult" to treat patient.  It is common knowledge rectal meds are a must in such patients.  So, to ban enemas/supps will inevitably mean many patients on the trial will not respond properly, who otherwise might have done - and thus impacting the likelihood of Abatacept getting a licence. 
 
Just my view on things.
 
I will report back after Infusion 4.  Take care


Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema - Had to stop as not allowed during trial
EPA Fish Oils, Various Homeopathic meds
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
 

Post Edited (KSU) : 3/20/2008 10:37:55 AM (GMT-6)


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 3/20/2008 9:07 AM (GMT -6)   
Good news that you are getting better. Have you reported that neck pain to your GI?

Just wondering if they don't allow any other meds because they have to test exactly what the Abatacept is doing. If you were on other meds, there is no proof to what meds did what.
 
 
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.
 
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.
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/20/2008 9:41 AM (GMT -6)   
thanks for sharing.....good to know there may be another option for us. Also, I agree w/cats, I think they need to know how effective the abatacept is on it's own.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007 - partial remission since 03/08
Prednisone 40mg 1xday (taper 5mg a week = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/20/2008 9:55 AM (GMT -6)   
Glad you are feeling better. That is great news! Keep us posted.
Tabitha (Tab)

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

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


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 478
   Posted 3/20/2008 10:07 AM (GMT -6)   
That's the point I am making - you ARE allowed other meds.  I am on Prednisolone, Azathioprine and Colazal.  So, who knows if one of these is finally working? You can take oral meds on the trial (with a few exceptions) but NO rectal meds.



Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema - Had to stop as not allowed during trial
EPA Fish Oils, Various Homeopathic meds
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
 

Post Edited (KSU) : 3/20/2008 9:21:32 AM (GMT-6)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2008 11:12 AM (GMT -6)   
I personally think rectal meds are only effective at treating very mild flare-ups/UC cases, & just possibly they can halt a flare-up or prevent it from worsening, provided you use them like 3x a day. This is just based on personal experience- when I was initially diagnosed with ulcerative proctitis, I used Rowasa enemas daily & they worked well, since my condition was really mild at that time. I have also used the steroid enemas many times since then, when my condition was pretty bad, & they did absolutely nothing. Maybe the rectal meds somehow inhibit the pharmaceutical action of the Abatacept? Although that doesn't seem likely, since it's a TNF blocker, no? I am considered to have refractory UC, by the way.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/20/2008 12:13 PM (GMT -6)   
aha, I get what you are saying, sorry!!! That is weird.......
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007 - partial remission since 03/08
Prednisone 40mg 1xday (taper 5mg a week = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 3/20/2008 3:12 PM (GMT -6)   
Seems you're in a good place! Thanks for the update.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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