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Ulcerative Colitis
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Posted 12/28/2012 6:40 PM (GMT 0)
Hello Everyone!
My wife was recently diagnosed with UC and we've been through some horrific flare-ups in the past few years. We are from the Southern California area and are looking to consult with a stem cell specialist to treat her condition. Is anyone here aware of who might be the group to contact? Thanks.

Jesse.
Posted 12/28/2012 6:44 PM (GMT 0)
The go-to-guy for this is Richard Burt at the Feinberg School of Medicine at Northwestern University. The autocomplete on Google will fill in before you type half that probably.

There are some drug trials ongoing in Phase III for a new (the first actually) stem cell drug called Remestemcel-l. Dr. Burt would actually do a complete transplant of the immune system, a much more in-depth and 'last step' option. In fact, I'm not sure it would be done for UC (I don't know though) maybe just Crohns. Wouldn't hurt to inquire though.

I hope you get some good info and treatment and let us know how it goes.
Posted 12/28/2012 6:49 PM (GMT 0)
Stem cell transplants are not available for UC at this time in the US or Europe. You might be able to go to Mexico but I personally would be very reluctant. Dr Burt does to SST for AI disease which includes severe, treatment resistant CD but not UC. The thinking is that the risks of SST outweigh that of colectomy (which is still considered a "cure", however imperfect, for UC). I hope SST will be available as a future UC treatment but for the moment it's quite a harrowing and dangerous procedure (though one which seems to have good results).
Posted 12/28/2012 6:54 PM (GMT 0)
killcolitis, Yeah I forgot this was a UC board for a minute :) I'm sure even the stem cell drugs that are in trial now wouldn't be available for UC for at least a while after they are available for Crohn's disease.

My GI said (before my diagnosis changed to Crohn's) that was one advantage of being indeterminate- you could almost always qualify for soemthing whether it was strictly UC or CD.
Posted 12/28/2012 7:01 PM (GMT 0)
Levi,
Yeah, I've heard that as well. Do you think you'll try for a stem cell trial?
Posted 12/28/2012 7:07 PM (GMT 0)
KC-I'm been doing fine for a while now since getting off pred (2 months-that's a while for me) but if I start failing the 6mp and another trial is opened in my area (Duke or UNC-Cheater Hill) I will go for it. The doc wants Humira as a next step but I am not good with that at all.

I was getting my free one year service on my car last Friday and noticed the girl beside me in the waiting area was looking up Clinical Trials online. I asked her about it and she was a recruiter for dermatological drugs. She gave me some interesting info and tips, it was kind of serendipitous.
Posted 12/28/2012 7:14 PM (GMT 0)
Well I hope you don't need anything for a long while but it's good to know some interesting things are in the pipeline - there's also the ssi vaccine from qbiologics (i think that's the company's name). It looks promising - it's about to start trials in vancouver. Maybe in 5 years or so there might be a relatively decent treatment for this bs.
Posted 12/28/2012 7:22 PM (GMT 0)
Thanks KC! How is your daughter?

Yeah, SSI sounds great. OP if you just so happen to be a Canadian national in SoCal, please look into the trials they are doing with it. They only accept Canadians at this time which is why I mentioned that. http://www.qubiologics.com/.
Posted 12/28/2012 7:30 PM (GMT 0)
I didn't know they only accepted Canadians. They accepted my daughter into a pre clinical trial in the Barbados but I didn't want to take her there just in case (she wasn't very stable). Might try the trial. She is up and down unfortunately. Thanks for asking.
Slowtruckn, sorry to hijack your thread. Have you looked into fecal transplants - there are trials going on and/or you can do them at home if your wife has a suitable donor. It's more doable than stem cells at the moment.
Posted 12/29/2012 3:14 PM (GMT 0)
Stem cell treatment for UC isn't going to happen any time soon. Dr. Burt's office told me that there aren't any stem cell treatment trials for UC in the near future. I've spoken to my GI and she said that stem cell treatment is MUCH riskier than surgery since it involves wiping out the entire immune system (much higher risk of death). I spoke to a hematologist/oncologist and a rheumatologist, and they both said that stem cell treatments will be for the most severe cases of lupus, RA, and CD.
Posted 12/29/2012 3:23 PM (GMT 0)
bookworm
That's for the stem cell transplant, but what about those other stem cell treatments like multistem (if that's what it's called). Anyone know anything about those?
How are you btw?
Posted 12/29/2012 3:39 PM (GMT 0)
Hmm, I'm pretty sure the hematologist/oncologist and rheumatologist were talking about transplants. Not sure about my GI--whenever I ask about new treatments, she never mentions Multistem or the like. Last I checked (sometime last year) Multistem was not recruiting for UC.

I'm doing okay, thanks. After 30 Remicade infusions, I'm still in remission but dealing with IBS, narcolepsy, and endometriosis. I hope your daughter finds relief soon--it's been too long of a struggle!

OP--which meds has your wife tried? Take a look at clinicaltrials.gov if you want to see if there are any new treatments.
Posted 12/29/2012 4:11 PM (GMT 0)
bw - I'm happy to hear it (the remission, not the other stuff)!
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