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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)


 
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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PatientlyMary, how long have you been waiting?
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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
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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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Wendsjoy, are you going on any medications soon?
11-19-2014, 06:15 PM   #129
Wendsjoy
 
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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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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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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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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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@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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Best of luck to your son. I hope he qualifies and the treatment does him well.
07-30-2015, 01:46 PM   #136
David
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Qu Biologics now has a trial for Canadians for Ulcerative Colitis

http://qucrohnstrial.com/contacts/ul...s-information/
08-11-2015, 02:00 PM   #137
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
For the record, I have reached out to a few people who were in the compassionate use trial like Colleen. I hope others will chime in with their experiences as well.
Hi David,

SSI sounds very promising. I filled out their online application today. I can't imagine they will take me into their study, since I live so far away in FL. However, it would be terrific!!!!

jayann
09-04-2015, 08:01 PM   #138
aloe
 
Join Date: Jan 2013
Location: California

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I posted a ways back that I was thinking about doing this if I was eligible, and wanted to update you on what happened. I talked to the nurse a few times, and explained my situation, and she encouraged me to send in my medical records. I did that, they were reviewed, and they told me it was likely I could qualify. I have stricturing and a fistula, but not really another other symptoms, but still they were saying it might be possible.

My doctor was ready to have me try Entyvio (Remicade, 6mp, and everything else has failed). So I decided to try Entyvio first. Now I'm through 3 months of that, and it has failed too.

I got back in touch with Qu and the person I was working with before has left, and the new person said with my situation I'm definitely not eligible because of the stricturing and fistula, and lack of other symptoms would also be a disadvantage.

So, all that for nothing. A little frustrating they didn't tell me that earlier so I could save some effort, but oh well.
09-04-2015, 08:18 PM   #139
Robrich
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aloe Maybe don't give up on the Entyvio so fast. If you failed Remicade after awhile like me it will likely take more than the basic every 8 weeks with ENTYVIO, just not enough med to overcome what is likely a more powerful response after beating up n the REMICADE.
We added MTX 1 ml SC 1x/w and about 6 weeks later the nflammation decreased quite noticeably on scope. Was able to decrease Pred from 40 down to 10.
Eventually we went to every 4 weeks for Entyvio and now the fistula has closed and my ESR is down to 9!
Hate giving up on any drug without giving it every possible chance to work.
Besides what other choices do we have?
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
09-04-2015, 09:56 PM   #140
aloe
 
Join Date: Jan 2013
Location: California

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Thanks Robrich. I would stay on Entyvio if my doctor says it's okay, and insurance will keep covering it. I'm in a bit of limbo because my doctor just moved away and left the clinic, so I'll be starting with a new doctor. Since my doctor wrote in my records that Entyvio is not working, I wonder if insurance will still approve it. Otherwise, yes, I shouldn't abandon one of my last options too soon.

She suggested Stelara might be the thing to try next, but hard to get approved by insurance. I did try MTX when I was on Remicade, and it didn't do anything except make my liver counts shoot up, so that was considered a failure too.

She has now prescribed Entocort, because she thought it was time for surgery (resection and ileostomy), and maybe that would temper the inflammation before the surgery. But the surgeon disagreed and said I shouldn't have surgery now because I don't have any symptoms! (They were just basing it on my MRI and fistulas). I was very relieved, but now not sure if I should go on the Entocort. I'll try anything at this point, but I also don't want to take so many drugs if it's pointless.

I've been a bit distraught over the ileostomy idea, though I know a lot of people deal with it, so I'd get used to it. But now I'm wondering if that's the only way to get my fistulas to heal, so maybe it wouldn't be the worst thing...sigh.
09-05-2015, 11:49 AM   #141
Robrich
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Aloe where in Cali are you?
Try the entocort for sure. Try every treatment you can including diet, probiotics, bone broth. Maybe look into anti map therapy

If you have have a stricture, you may not be able to avoid surgery. Depending on where it is maybe they can do a resection and you can avoid the ostomy. I had a stricture and non draining fistula abscess in my left colon which they cut out and rejoined. It was very successful and no bag. Surgery is not a cure for Crohn's so my feeling is avoid it as long as possible.
And when a SURGEON says not to have surgery that is something I would respect a great deal. Most surgeons only know one thing, let's operate!
09-06-2015, 09:59 AM   #142
aloe
 
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I pm'd you Robrich because I don't want to hijack the thread on the trial.
06-17-2016, 06:36 PM   #143
Scared1
Senior Member
 
Join Date: Apr 2016
Hi David,

I just responded about my experience with the SSI treatment in another thread, but just to get the message out there as much as possible, I'll add my two cents in here as well!

SSI is a vaccine that you administer yourself, every other day; the method is similar to insulin injections commonly used for diabetes for example. Prior to going on the vaccine you are trained by a health professional on how to administer the vaccine properly. The vaccine is composed of dead bacteria - it's all natural and there are no side effects as a result (at least I never experienced any while I was on the vaccine, nor did the patients that I spoke with who were also on it). The vaccine activates the body's immune system by targeting the organs affected by the disease, thereby reversing the chronic inflammation associated with Crohns, Colitis, and other autoimmune diseases. I was on the vaccine for just a little under a year (July 2011 to June 2012). It literally changed my life. I was originally diagnosed with Crohn's in November 2009 and for the first year after the diagnosis I was in excruciating pain, probably because I refused to take all of the crazy drugs that were being pushed my way by my GI specialists. But I was always a firm believer in taking the natural route so I saw a natural path and focused on trying to get better through a better diet, herbs, probiotics, digestive enzymes, the list goes on. And although that did help a little, the pain remained. I ended up in the hospital with a bowel obstruction June 2011 and it was shortly after that, that my natural path told me about the clinical trial for SSI therapy, originally started by Dr. Gunn, a doctor from BC. Since SSI therapy was still in its beginning stages at this point, I actually flew all the way to the Bahamas to participate in the trial since it had not been approved in Canada yet. But now it is, because they have seen so much success with it! I am no longer on the vaccine, and have been symptom free (knock on wood) for almost two years. Following a colonoscopy from March of last year, I was told that I am 100% in remission. I can't stress enough how different my life is now. And that, coming from someone who wasn't even able to get out of bed for days to go to work, is saying a lot. I noticed a difference in my symptoms within 48 hours of taking the vaccine. I would strongly, strongly, recommend this treatment to anyone. Let me know if you have any other questions!
Hi Natalia Maria,
That is such a great story! Are you still in remission?
06-17-2016, 06:37 PM   #144
Scared1
Senior Member
 
Join Date: Apr 2016
I posted a ways back that I was thinking about doing this if I was eligible, and wanted to update you on what happened. I talked to the nurse a few times, and explained my situation, and she encouraged me to send in my medical records. I did that, they were reviewed, and they told me it was likely I could qualify. I have stricturing and a fistula, but not really another other symptoms, but still they were saying it might be possible.

My doctor was ready to have me try Entyvio (Remicade, 6mp, and everything else has failed). So I decided to try Entyvio first. Now I'm through 3 months of that, and it has failed too.

I got back in touch with Qu and the person I was working with before has left, and the new person said with my situation I'm definitely not eligible because of the stricturing and fistula, and lack of other symptoms would also be a disadvantage.

So, all that for nothing. A little frustrating they didn't tell me that earlier so I could save some effort, but oh well.
Hi Aloe,
That is a disappointment. Do you think that this is something - if all goes well, you would want to do once it is approved? Does stricturing affect it working on you or did they mention that it is just because of safety reasons during the trial?
Reply

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