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Crohn's Disease Forum » Books, Multimedia, Research & News » Forum Approved Clinical Trials, Research Studies, Surveys and Products » Important new low side effect treatment option in clinical trial you may be eligible for (or help others learn about)


 
06-25-2014, 06:07 PM   #91
Poppysocks
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I will definitely be giving it a shot once I get my darn medical records. Been waiting for like 2 weeks.

They pay you a pretty nice stipend to participate. That, plus it's harmless from what I understand. No side effects. There is literally no reason people shouldn't be going crazy about this. I just don't think anybody knows about it.
06-25-2014, 06:48 PM   #92
colleen.miller1428
 
Join Date: Mar 2014
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Everyone who is attempting to join the trial, I congratulate you for your patience and efforts! It will all be worth it in the long run! I hope more Americans and Canadians will take the opportunity they're presented with.

How are current trial patients feeling? All good news?! I'm going on 2 years of remission. Everyday I'm so grateful for this treatment.

Stay healthy and stay positive!
06-26-2014, 06:01 PM   #93
Crohn2357
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David, have you ever think about making a visible sticky announcement about this trial in forum? Would that be appropriate with forum rules and principles?
06-28-2014, 09:28 PM   #94
Lady Organic
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Next time I see my GI I will bring him the information about the trial. I am so excited about this new treatment understanding (if im correct) its mechanism of action is to boosting the immune system instead of supressing it like the other meds we take like anti-TNF or immuno-supressors. Its finally a mode of action I agree with, feel confident about and in respect with my logic. This new treatment makes me dream and feel so much joy, hopefully it will be a reality for us soon. Thanks to all of you for receiving the treatment and sharing with us. thank you David for being our intermediate and reference. Im so happy to be part of the forum and to have access to such priviledged information. THANK YOU!!!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
06-28-2014, 10:01 PM   #95
vtfamily
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This is cool! I'll pass along to our GI doc.
07-05-2014, 10:16 AM   #96
bees
 
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I keep accidentally hijacking Trevor's thread with my updates: http://www.crohnsforum.com/showthrea...067#post794067

I was able to be much more naughty with my diet while on Remicade, but I'm not complaining, I like any excuse to eat better.

Last edited by bees; 07-05-2014 at 12:47 PM.
07-08-2014, 09:02 AM   #97
mousesjca
 
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I had an appiontment with my GI today. I was on Humira and had to come off because of severe joint pain and migraines. The next step was to put me on Remicade. I showed him this study and he basically brushed it off and said it's such a small study and that this had been tried before. Has anyone else had this kind of feedback from their GI?
07-14-2014, 12:30 PM   #98
David
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I had an appiontment with my GI today. I was on Humira and had to come off because of severe joint pain and migraines. The next step was to put me on Remicade. I showed him this study and he basically brushed it off and said it's such a small study and that this had been tried before. Has anyone else had this kind of feedback from their GI?
60 participants for Phase I/II isn't a small study. And could you ask them for details on when this was tried before as I'm not aware of such data.

Many doctors will brush off that which they don't understand or is different from what the mainstream doctrine prescribes. Frankly, I can't blame them as they are usually so busy that it is hard to find the time to understand the theory behind this treatment. And even then, it takes an open mind.

The thing is, what if this treatment IS efficacious? I can't say for sure that it will prove to be, but what if it is? That will mean a new treatment option with what appears to be minor side effects compared to traditional treatments. How amazing would it be if doctors had a first-line treatment that had very little side effects and was shown to be statistically efficacious? And then only use treatments like biologics with their side effects in refractory disease? As such, I feel it is imperative that we ensure that this treatment is thoroughly and properly investigated thus my passion for getting the word out.
07-14-2014, 02:56 PM   #99
mousesjca
 
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That was my thought David. My GI has had me on Imuran and Humira. I had a small reaction to Imuran and a huge reaction that i'm still trying to get over with Humira. He is still pushing Remicade or Vedolizamab. One side effect just as scary and the next.

He didn't go into huge detail of the study but it had something to do with pigs and worms. If you google that treatment it was stopped in 2013.
07-14-2014, 03:40 PM   #100
David
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This treatment has absolutely nothing to do with pigs, worms, or any sort of parasite.
07-14-2014, 03:45 PM   #101
Nosebag
 
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I'll let you know what my GI says because I'm going to ask can I get the laboratory tests for this trial done through the hospital I attend. I'm currently on Imuran and Remicade and think anything is worth taking a chance on rather then these crappy meds. The last time I was actually at one of my appointments the doctor said that in fifteen years there will be much better treatment for Crohns and they will be laughing at the meds they used to use.
07-15-2014, 08:07 AM   #102
Sea_Star
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It's only for moderate to severe?! What are the criteria for these categories...i don't have D, just abd pain and some inflammation in the TI. :/
07-17-2014, 02:45 PM   #103
David
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Sea Star, if you're interested in the trial, my suggestion would be to contact Qu Biologics and they can't give you better insight as to whether or not you qualify.
08-04-2014, 11:21 PM   #104
bees
 
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I think that qualifies as moderate Crohns, Sea_Star.

I didn't have diarrhea but did experience pain and inflammation, I was still accepted.

As of last friday I am finished my 16 weeks of injections, still feeling amazing in comparison to the start of this year!

So glad I signed up for this! At the beginning of this year my life was starting to go down the crapper... my crohns had returned in full swing, I lost my job because I was too sick to work, and my GI misdiagnosed my c.diff infection and sent me for surgery to get my terminal ileum removed.

I started to research alternative options online and found the Qu Biologics trial. I signed up and they discovered my c.diff, helped me get that resolved, then flew me out to Vancouver to start treatment. Luck was on my side as I was not in the placebo group and started to feel relief from my symptoms after only 3 weeks.

On my 2nd trip to Vancouver my health was amazing, I lucked out again and found a job opening doing my dream job of video game development. The interview went well, I got the job and moved to Vancouver a month later

If anyone is on the fence about this treatment and wants to chat feel free to PM me for my contact info, or if you need any help/support in Vancouver when you're here for treatment let me know, I would be happy to assist!
08-05-2014, 04:54 AM   #105
rollinstone
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Really hope this thing gets approved and the process is sped up so it's available for all of us
08-05-2014, 08:39 PM   #106
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I tried to get my son in the trial but he has not been diagnosed with Crohn's for 6 months. Now he has a fistula, does anybody know if this treatment helps heal these really creepy things? I was told the antiMAP antibiotics will, but he cannot participate in the Redhill trial because the FDA considers fistulas a separate disease. I have been considering finding a doctor to start him on antiMAP, but if fistulas can be healed through this treatment I would so prefer that to him taking a ton of antibiotics for years. We just need to wait for the 6th month mark.
08-05-2014, 09:10 PM   #107
Trevor
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I tried to get my son in the trial but he has not been diagnosed with Crohn's for 6 months. Now he has a fistula, does anybody know if this treatment helps heal these really creepy things? I was told the antiMAP antibiotics will, but he cannot participate in the Redhill trial because the FDA considers fistulas a separate disease. I have been considering finding a doctor to start him on antiMAP, but if fistulas can be healed through this treatment I would so prefer that to him taking a ton of antibiotics for years. We just need to wait for the 6th month mark.
I had either a draining abscess or fistula for almost a year. It healed about 6-ish months before the trial but the scar has totally changed during my treatment (disappeared almost, seemed to finally fully heal) and I also had skin-tags that are associated with Crohn's and are in the same general vicinity and they have all but vanished.

Can't say one way or another for certain if it was the SSI but I certainly feel it was as all this only happened after I was on the active treatment.
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- Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
08-05-2014, 09:23 PM   #108
InkyStinky
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I am so very excited about SSI! Not currently flaring, so can't get into the trial. But so hopeful that one day I might be able to swap out my maintenance med for an SSI induced remission!
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IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
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Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
08-10-2014, 10:49 AM   #109
Trevor
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I am so very excited about SSI! Not currently flaring, so can't get into the trial. But so hopeful that one day I might be able to swap out my maintenance med for an SSI induced remission!
That's one of the things that excites me about the SSI. If it becomes a new first response drug it can, hopefully, head off a lot of problems for a lot of newbies and get a bunch of us off our current pharmaceuticals.

A friend sent me a photo of a Qu Crohn's Trial add on the Skytrain (subway). Still short a pile of folks to complete this phase.
08-20-2014, 09:39 AM   #110
PatientlyMary
 
Join Date: Aug 2014
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I filled out the forms last night. I hope I qualify. I'm ready to go tonight, if they'll take me.
08-21-2014, 02:16 PM   #111
David
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Best of luck PatientlyMary. Please keep us updated as to what they say!
08-28-2014, 12:08 PM   #112
PatientlyMary
 
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Hi guys. I talked to Audrey the day after I applied online for the trial. It took only a few days to get my medical records, but my passport application was a little more complicated. I only had a copy of my birth certificate, so thought I would have to send away to LA and have to wait a few more weeks. But as it turns out, my mom had the real thing in a lock-box. Now I can start the trial process as soon as my passport arrives. Should be a couple weeks! I can't wait to go!
08-28-2014, 12:22 PM   #113
bees
 
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I finished treatment at week 16, it's now week 20. I'm still in remission, as long as I keep a good diet.

These days straying from a healthy diet gives me symptoms within a day, which is helping me identify which foods are problematic more easily. While on remicade I had to eat more 'bad' foods to get flare up symptoms.

Seems like dairy and gluten are a big issue for me, when I avoid those I don't get diarrhea or cramping. I've also eliminated 'ruminants' to avoid exposure to MAP.
08-28-2014, 04:02 PM   #114
Poppysocks
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Bees, what kind of shape were you in before ssi?
08-28-2014, 05:23 PM   #115
bees
 
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I got c.diff from a colonoscopy at the end of last year, it went undiagnosed for a while and messed up my terminal ileum so my gastro scheduled a resection for February 2014. According to my gastro, surgery was necessary and he didn't think the qu trial was worth trying. He warned me that if I put off the surgery I could get a ruptured bowel and die. I went against his advice and flew out for the qu treatment after finding it online and learning that it had no reported side effects. During the treatment, I developed some painful stricturing at the ileum which eventually resolved itself after I reduced my fiber intake for a few weeks.
08-28-2014, 05:27 PM   #116
Poppysocks
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I got c.diff from a colonoscopy at the end of last year, it went undiagnosed for a while and messed up my terminal ileum so my gastro scheduled a resection for February 2014. According to my gastro, surgery was necessary and he didn't think the qu trial was worth trying. He warned me that if I put off the surgery I could get a ruptured bowel and die. I went against his advice and flew out for the qu treatment after finding it online and learning that it had no reported side effects. During the treatment, I developed some painful stricturing at the ileum which eventually resolved itself after I reduced my fiber intake for a few weeks.
wow so it seems like you were in pretty bad shape. What does your diet look like now? Chicken and fish?

I didn't even know getting cdiff because of a colonoscopy was possible.
09-22-2014, 04:17 PM   #117
aloe
 
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I just learned the Remicade and 6MP I've been taking for the last couple years are not working, so my doctor wants to discuss trying Entyvio next. I was just reading that forum to see how it's worked for people here, and learned about this trial. I will bring it up with her at my next appointment. I anticipate she won't be keen on it, because she is part of a research institution, and has her own very strong opinions. But after reading about people's experiences on this vs. Entyvio, this seems much more encouraging. I have a fistula and stricturing, and want this fistula healed already!! Besides, I've always wanted to check out Vancouver! Well, my hopes aren't too high she'll okay this right away. Maybe after she's exhausted all the other meds she wants me to try. When i asked her about FMT, she said she recommends it only after they can figure out nothing else that will work.
09-22-2014, 09:42 PM   #118
Lady Organic
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I finished treatment at week 16, it's now week 20. I'm still in remission, as long as I keep a good diet.

These days straying from a healthy diet gives me symptoms within a day, which is helping me identify which foods are problematic more easily. While on remicade I had to eat more 'bad' foods to get flare up symptoms.

Seems like dairy and gluten are a big issue for me, when I avoid those I don't get diarrhea or cramping. I've also eliminated 'ruminants' to avoid exposure to MAP.
thats great news BEES. when did you start your elimination diet? How do we know if its the treatment your receiving or the elimination diet that has improuved your condition? seems a few people do some nutrition treatment along with medical treatment trial. It does bring a bias to the experiement imo, but I understand your position and cant blame the patients for doing best they can, I'd do the same.
09-24-2014, 05:49 PM   #119
aloe
 
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I filled out the form and talked to the nurse today! I've decided I'm going to go for it!

The only obstacle (which happens to be a pun) for me is I have some stricturing, and the nurse says stricturing is one of the things that disqualifies you. But she said it depends on the level of stricturing, so the only way to know if I'm disqualified is to send in my records and have their doctor evaluate it. That would be disappointing.
09-24-2014, 10:52 PM   #120
David
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Good luck aloe! Please let us know what they say.
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