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OFFICIAL CLINICAL FT TRIAL

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Posted 2/8/2013 10:08 PM (GMT 0)
I was asked by a few people to start a dedicated thread on this.

For the benefit of others who are currently on officially sanctioned trials, and of course for the many brave people who are conducting the various DIY methods at home.

Further to what I have posted on the 'FT log' thread.  Unfortunately my second infusion had to be cancelled today because of a severe snow storm in the NE which has spilled over into Ontario.   The hospital called me and rescheduled infusions 2 and 3 for next Thurs and Fri (Feb 14 and 15)

So I'm sorry I have nothing to report 'til next Friday.

 

Posted 2/9/2013 1:58 AM (GMT 0)
Maybe they'll actually buy you dinner before the party gets started on Thursday...

Happy Valentines :)

Sucks that it has to be delayed... I've been shoveling this stuff all day...

Just wanted to say thanks for starting this thread. And good luck next week! There's a lot of us going to be rooting for you, I'm sure of that.

One quick question though. Are you following a specific diet through this?
Posted 2/9/2013 2:50 AM (GMT 0)
Mackster!

I've been waiting to hear about this. ( I didn't know you were posting on the FT thread). Bummer about the delay, I hope you guys aren't hurting too much for all the shovelling. We had one of those gorgeous sunshine Northern Ontario days :-)

Anyways, I'm so positively pumped about this for you! I know it's going to work.

Did you ever post your doctor's name? I'm hoping to ask my own GI if it's at all possible to get a referral to another GI in Ontario. My GI has no time to even speak with me about the treatment I'm getting. Not his fault, he's got too many people to see. I want to find a GI who is able to help me seek the cause, not just put bandaids that make matters worse.

Anyways, let's hope your delay was for the best. Happy shovelling!
Posted 2/9/2013 8:44 PM (GMT 0)
To have this thread make more sense, I've cut and pasted one of my posts from the FT log thread:


VIEW IMAGE Posted 2/5/2013 3:18 PM (GMT -7) VIEW IMAGEVIEW IMAGE
Kilcolitis, it's a goverment sponsored clinical trial. I realize that there are many DIY's being performed but as you know there is no official method, and can carry more risks than you would want to know about.

I have mentioned details of this trial in previous posts but in case you missed it, in a nutshell it is a six-week trial at a university teaching hospital. It is a 'double-blind' study (50% placebo) and the code is not broken until after six (weekly) infusions.

I'm not sure how many volunteers there are but I suspect it's in the many dozens.

The (anonymous) donors have been thoroughly screened to filter out any potentially dangerous infectious diseases.

There are official trials like this being carried out in Australia, Canada and Europe but I'm not sure about the US. I do know there are some Americans taking part in this one as it's only 45 mins from the US border. I don't believe they are getting it for free though. If I turn out to be a placebo patient I get the option to continue on the right stuff for a further six weeks.

The objective is to formulate a consistant and effective method, and to eventually synthesize the fecal matter. Who knows it may lead to a safe DIY 'kit'.

I mean, without messing about with blenders and other dubious methods you read about. This is not a pop at some people who are enjoying a degree of success with their home grown attempts, I wish them all the best and hope they can maintain remission.

Not everyone is able to do (the home stuff) and the trials should take out a lot of the uncertainties and risks.

 

Posted 2/9/2013 11:26 PM (GMT 0)
Nice this is being done finally.
Posted 2/9/2013 11:58 PM (GMT 0)
I am excited to hear more about this! I may actually be taking part in the same study (assuming it's the McMaster one you are talking about).
Posted 2/10/2013 3:04 AM (GMT 0)
Darn! I would have LOVED to have tried this. Too late for me now.

I did do a home version, but a trial would've been better.

Good luck! I am excited for you - and laughingduck too!

I look forward to following this thread.
Posted 2/16/2013 12:56 AM (GMT 0)
Well, I've had infusion 2 and 3.

#2  2.30pm Thursday,  went ok, managed to retain the fluid 'till Friday am.   Had more rectal pain through the night than normal but it didn't stop me sleeping.

#3  3pm Friday.  (they were running behind half an hour)  Could only manage to retain it for about 5 minutes.  Thankfully I was up and dressed and donned a Depend.

I just couldn't make it to the toilet down the hall in time.   Tbh, it was as though I'd taken a 'real' enema, ie. a purgative!   Methinks that #3  would have to go down as a 'fail'.  Unless someone more experienced in FT could shed more light on it.

I'm having mixed feelings about this.  Readers, let's not be misled by the words 'clinical' and 'official by thinking that somehow it has to better than DIY.   I'm not questioning the motives of the trial, it will after all, be beneficial.   If DIY is done under the auspices of a GI, then I'm sure it should be sound.   I was put off when blenders and confectioners icing bags were mooted.   Not to mention the provenance of the 'donated matter'.    I would hope that the donated matter in this trial is tested thoroughly for infectious diseases.

It's still too early to draw any definitive conclusions yet, (still in a moderate flare)but if I don't get any positive reactions after infusion #4 (next Friday 1.45pm), I might start thinking that I've got the placebo----or hoping that I got it!

Note: I've tapered down to 5mg pred.   I'm thinking I should stay on it for a few weeks more?

Posted 2/16/2013 1:18 AM (GMT 0)
Hey Mackster.

Sounds like it was a rough go at things today. I meant to tell you that I did a really, really high dose of oral probiotics for a bit and at first I actually had some pretty intense urgency a few hours later and then the next day as well etc... then after a while things really settled down but it took consistency for me (i.e daily doses). I have a bit of a gut feeling other FT people might have experienced something similar.

Anyway - What I really wanted to ask you was if your trial is with real umm donor fecal matter or synthetic fecal matter like what was developed at the University of Guelph...


Ahhh - wait I see now the answer to this question above..

As for your 5/mg of Pred... I guess the real question is what to do if things get worse over the next few weeks during the trial. Did you ask your doc if you could continue and/or increase meds during the trial if needed? Or are you expected to tough it out the best you can?

I sooooo hope it kicks and and works for you though!... or that you totally have the placebo... Ugggg... why does everything with this disease and treatments have to be so darn frustrating! haha
Posted 2/16/2013 2:57 AM (GMT 0)
Well, my hat's off to you for going through this for the good of the group. Does anyone 'interview' you before each infusion and take notes on how you are doing?

Also am wondering, the placebo poop is your own is it not? How do they collect that?

I can see how you are hoping you aren't getting donor FT at the moment. How long do you have to wait till that's offered?

Best of luck, Mackster, I still think this is going to work for you!
Posted 2/16/2013 6:10 PM (GMT 0)
Mark, I'm not sure if the synthetic fecal matter has been passed as 'fit for purpose' yet.

Lodi, geez I hope they're not giving me my own ***t back!  I'm not an Indian-Giver!

However....  ???, there is about a ten minute gap between handing them the 'sample' and getting the infusion.   I can't see them wanting to replace known 'bad' bacteria as a placebo, but now you've left me with a doubt. Thanks!    I asked the nurse if I could see the syringe before insertion and she refused saying it would break the 'blinding' rules.

Mark, If I feel that my flare is getting out of control I will have no hesitation but to ask my GI to increase the dose.

Lodi, there's no interview before each infusion, I guess that was all done during the screening at McMaster Uni.   There is a log I believe (I've mislaid it) where you enter any adverse reactions.  I don't think I've had anything you could call adverse yet, but they will know if I do, trust me!

This morning I've not been too bad, just about three BMs up to now (1pm).

Posted 2/16/2013 7:14 PM (GMT 0)
Crumbs! I hope I'm not messing with your frame of mind...

I'm sure you could ask what the placebo poop is...I figured it would be your own, because what else could they use? If they use a donor, then you're getting a fecal transplant. If they just use fluid, that's an enema and might be really difficult to hold.(Which would explain Friday)

You'll be no worse off short term (I know, easy to say from this side) and better off long term because you said they are going to offer you the treatment after what? six weeks?

Three BMs by 1:00...is that better than normal for you?

Hang in there we've got our pom poms going for you
yeah
Posted 2/16/2013 7:24 PM (GMT 0)
Hahaha, what a coincidence. I am on the same trial. I got screened at Mcmaster and I'm receiving the treatments at St-Joseph by doctor Lee.

I was there at the screening with other young people. I vaguely remember an older person there. I see from your DOB that you're 70. Were you the one that asked why you didn't get a hypodermic needle for sedation before the sigmoidscopy?

Anyways, I got my first infusion yesterday. Like you, I don't know if I got the placebo or the real stuff. Anyways, time will tell. I won't do any updates on this until it is all finished.
Posted 2/16/2013 10:15 PM (GMT 0)
No Somedude, I certainly didn't ask why I didn't get a hypodermic for sedation.  It must have been another old fart!     Good luck and stay placebo-free!

Note: If you've just had your first infusion, you must have been screened at a later date than me. I was screened last November and I've had 3 infusions already since Feb.4.

Posted 2/18/2013 4:11 AM (GMT 0)
I forgot to put in a mention for the 'intestinator'.   Here's hoping you get stable enough to re-start your trial soon.   I thought my flare was too severe tbh.  I just want to get it over with, and if I'm as I suspect, a placebo patient then I'll be on a second run about the same time as your first.    When you think about it, it seems kinda cruel to be giving placebos to people in any sort of a flare.   It's all in the name of science I guess.

If you are able to access the internet, please keep us posted.

Posted 2/23/2013 7:17 PM (GMT 0)
Update: infusion #4  friday feb 22.

Another disappointment.   Only managed to retain it for a few minutes.

Like last week, it was more of a purgative.   There's probably too much imflammation in my rectal area. I'll spare you all the messy details because I'm a bit down atm.   The presiding doctor told me they will reduce the dose for my final two infusions from 60ml to 30ml.   Let's hope I have more luck with that.

How's the intestinator doing?   He hasn't posted for a while, since he was hospitalized.

Posted 2/23/2013 7:24 PM (GMT 0)
what time did you have the infusion on feb 22?
Posted 2/23/2013 8:01 PM (GMT 0)
My appointment was for 2.30 but they were running late so it was quite a while after that. I'm not sure the exact time, sometime round 3pm?
Posted 2/23/2013 8:03 PM (GMT 0)
Oh, me and some other dude close to were I live, go around 12:45 pm.

My next appointment is March 1th, around the same time. heh.
Posted 2/24/2013 3:05 AM (GMT 0)
How are your infusions going somedude, are you feeling any improvements?

Do you think you're on the real stuff, or the placebo?

Posted 2/24/2013 3:22 AM (GMT 0)
no improvements so far, I think I'm on the placebo. The other dude told me he got worse, but I don't think it's because of the infusion, I guess it's just the nature of the disease.

We shall see.
Posted 2/24/2013 5:12 PM (GMT 0)
dude, are you retaining it ok?   I'm having problems.
Posted 2/24/2013 5:20 PM (GMT 0)
the first time I retained it the whole time, the second, I had troubles. But it doesn't matter, the doctor said you only have to retain it for 30 seconds. I asked her this numerous times.

The second time, I retained it for 5 minutes, then I couldn't hold it no more.
Posted 2/25/2013 3:16 AM (GMT 0)
Mackster, just wanted to share with you and the rest on the forum: I had a FT done at he mayo clinic in Rochester,mn in jan of this year. I went to them to discuss my uc issue and bouts with cdiff. I was there for a week and on the third day I had the ft done as part of their research,via colonoscopy procedure. They provided the donor for me. Before I got this done, I was just finishing up a 2 month course of vancomycin for cdiff, weened down to 5mg prednisone (from 40mg)and 200 mg pentasa per day. I was pretty much normal, 2-3 solid bm's per day, no blood, no urgency. Felt pretty good. After the FT, I had some cramping, loose stools, smell was bad, just didn't feel right. Saw my local GI, she put me back on 40 mg prednisone. It took over a month, but I'm back to where I was before the FT. After 2 stool samples for cdiff, everything came back negative. I feel like half of my problem is solved. I don't regret getting the FT at all. Very skeptical that a FT will cure UC, but I have read research that supports this. Wish you the best and I hope that you have success with he FT.
Posted 2/25/2013 4:13 AM (GMT 0)
Cheers Dallas.   I'm not going to give up on FT, I've got a strong feeling that I'm on the placebo so I probably will be having these enema infusions for another couple of months.  Let's see what happens, and all the best to you.
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