Important new low side effect treatment option in clinical trial you may be eligible for (or help others learn about)

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.

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. :/

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.

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!

Really hope this thing gets approved and the process is sped up so it's available for all of us

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.

Mommabear said:

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.

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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.

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!

InkyStinky said:

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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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.

I filled out the forms last night. I hope I qualify. I'm ready to go tonight, if they'll take me.

Best of luck PatientlyMary. Please keep us updated as to what they say!

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!

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.

Bees, what kind of shape were you in before ssi?

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.

bees said:

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.

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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.

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.

bees said:

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.

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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.

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.

Good luck aloe! Please let us know what they say.

I'm still waiting to talk to the study nurse. It's getting discouraging. I guess they only call on certain days? Blagh.

Ha, NOT so patiently waiting....lol

PatientlyMary, how long have you been waiting?

I was waiting for my passport, but that was pretty fast, just over three weeks. I called on the 16th. Now the nurse can't call until the 30th or something?

I've been waiting about six months for any crohn's treatment because there was a mix-up switching GI docs, so I'm just sick of being sick. That's not Q's fault. I just want to go in some direction soon!

Still plenty of slots yet to be filled...

David said:

Good luck aloe! Please let us know what they say.

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Thank you David! Finally got my records sent in, and talked to the nurse. It sounds like I have a chance, so just waiting to see. If I start it might be awhile though, because I'm still on Remicade. It hasn't been working, but my doctor wants to wait until I have something to switch to before I go off it. We were thinking about Entyvio next, but apparently it takes a couple months for insurance to approve it, and I'll be switching insurance companies in Jan. because of Obamacare, so everything is up in the air for me for insurance. She said I should wait until things are settled and I have my new insurance before we apply for Entyvio. Meanwhile, she added methotrexate injections for my treatment.

So I've sent in my records and if I can qualify for the trial, I'll see if my doctor is okay with me going off Remicade and trying the Trial before switching to Entyvio. It all seems a little dicey to me though at this point, because I'm worried my doctor won't support me in this. She's very good, but opinionated. If she's not into it, I might lose her support, and I'll need her probably after the trial is over.

Can anyone share experience about what it was like getting their doctor on board with this?

aloe said:

Thank you David! Finally got my records sent in, and talked to the nurse. It sounds like I have a chance, so just waiting to see. If I start it might be awhile though, because I'm still on Remicade. It hasn't been working, but my doctor wants to wait until I have something to switch to before I go off it. We were thinking about Entyvio next, but apparently it takes a couple months for insurance to approve it, and I'll be switching insurance companies in Jan. because of Obamacare, so everything is up in the air for me for insurance. She said I should wait until things are settled and I have my new insurance before we apply for Entyvio. Meanwhile, she added methotrexate injections for my treatment.

So I've sent in my records and if I can qualify for the trial, I'll see if my doctor is okay with me going off Remicade and trying the Trial before switching to Entyvio. It all seems a little dicey to me though at this point, because I'm worried my doctor won't support me in this. She's very good, but opinionated. If she's not into it, I might lose her support, and I'll need her probably after the trial is over.

Can anyone share experience about what it was like getting their doctor on board with this?

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My dr was never on board. I did this on my own. I was not on any medications though, so it was way easier for me to go around him. However, I will say that even though his attitude was very negative towards the whole thing, after seeing my labs and all the improvements that I made he was much more interested.
Good Luck! I hope you get in. I'm jealous I wish I didn't have to stop taking it!

Wendsjoy, are you going on any medications soon?

Hi David I met with my GI guy last week. My labs actually looked pretty good from October (fecal cal: 440 c-reactive: 1.26) so we decided to start with 5ASA's instead of pulling out the big guns yet. I'm still feeling pretty crappy but am hopeful that the SSI was enough to downgrade to a lesser med at this point. I'll be have a scope in a few months to see what's really going on in there. For now we wait and see.
Thanks for asking! I'm still working on plotting all my labs. I'll get to it at some point soon.

Normally I'd be concerned about you just being on 5ASA but I understand you're in unchartered territory. Please keep us updated as to how you're doing

Nothing to report from me, still in remission since April/May thanks to this treatment and diet changes.

Happy Birthday David

That's awesome bees! I'm so happy for you Thanks for the update!

And thank you.

Qu Biologics is now looking for patients and caregivers to join their IBD Advisory Panel: http://www.qubiologics.com/partner-with-us/ibd-community-advisory-panel/

@David I want to thank you for posting this. We are in the process of filling out the paperwork for the clinical trial and at this point it looks like my son is qualified. He sent in the survey and talked to the study nurse, so we'll see if he gets in.

He is 21 and is currently on Imuran 150mg + now added Entocort but we can't seem to keep things at bay.

I can keep you guys posted on what happens, but just wanted to say thanks again for getting the word out. What they're doing with SSIs is very impressive and I hope we get in!

Best of luck to your son. I hope he qualifies and the treatment does him well.