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)


 
09-26-2014, 01:46 PM   #121
PatientlyMary
 
Join Date: Aug 2014
Location: New York
I'm still waiting to talk to the study nurse. It's getting discouraging. I guess they only call on certain days? Blagh.
09-26-2014, 02:49 PM   #122
PatientlyMary
 
Join Date: Aug 2014
Location: New York
Ha, NOT so patiently waiting....lol
09-26-2014, 06:04 PM   #123
David
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Join Date: Feb 2006
Location: Naples, Florida
PatientlyMary, how long have you been waiting?
__________________
It's good to be back
09-26-2014, 09:05 PM   #124
PatientlyMary
 
Join Date: Aug 2014
Location: New York
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!
10-18-2014, 04:44 PM   #125
David
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Join Date: Feb 2006
Location: Naples, Florida
Still plenty of slots yet to be filled...
11-12-2014, 01:28 PM   #126
aloe
 
Join Date: Jan 2013
Location: California

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Good luck aloe! Please let us know what they say.
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?
11-12-2014, 01:51 PM   #127
Wendsjoy
 
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Join Date: Jul 2013
Location: Philadelphia, Pennsylvania

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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?
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!
11-18-2014, 12:12 PM   #128
David
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Join Date: Feb 2006
Location: Naples, Florida
Wendsjoy, are you going on any medications soon?
11-19-2014, 06:15 PM   #129
Wendsjoy
 
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Join Date: Jul 2013
Location: Philadelphia, Pennsylvania

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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.
11-20-2014, 09:59 AM   #130
David
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Join Date: Feb 2006
Location: Naples, Florida
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
12-15-2014, 02:32 AM   #131
bees
 
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Join Date: May 2014
Location: Vancouver, British Columbia
Nothing to report from me, still in remission since April/May thanks to this treatment and diet changes.

Happy Birthday David
12-15-2014, 09:17 AM   #132
David
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Join Date: Feb 2006
Location: Naples, Florida
That's awesome bees! I'm so happy for you Thanks for the update!

And thank you.
01-30-2015, 08:15 PM   #133
David
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Join Date: Feb 2006
Location: Naples, Florida
Qu Biologics is now looking for patients and caregivers to join their IBD Advisory Panel: http://www.qubiologics.com/partner-w...dvisory-panel/
03-24-2015, 02:54 PM   #134
theresad
 
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Join Date: Nov 2012
Location: Chicago, Illinois

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@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!
03-24-2015, 02:56 PM   #135
David
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Join Date: Feb 2006
Location: Naples, Florida
Best of luck to your son. I hope he qualifies and the treatment does him well.
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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)
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