Multistem trial for moderate to severe UC success

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supermom22
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/20/2013 3:55 PM (GMT -6)   
So I've been to this site many time researching things about UC but I've never posted before.  However, after taking part in this Multistem trial I feel a duty to say something to others who are suffering about the excellent response I've had thus far in this trial.  Long story short I was diagnosed in 1999 and been thru sulfasalazine, all mesalamine forms, VSL #3, prednisone, and Uceris and all had stopped responding.  I was continuing to get really sick and didn't want to go on Remicade or Humira because I think they are pretty scary drugs and I'm still really young.  So I researched the Multistem trial for the clinical trials.gov website.  I went through the screenings, was a candidate and had a 50/50 shot of having the Multistem stem cell infusion back in August.  I was rated a 12 mayo score then.  I'm confident I received the Multistem because I have slowly improved every day and am pretty sure I'm in complete remission now (I go back in two weeks for another look see).  At any rate, I encourage any of you who are suffering and not being helped by the drugs we have available to us to check into this trial.  Let me know if there are others of you having any results with this trial please.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9989
   Posted 9/20/2013 5:12 PM (GMT -6)   
That's great news. I hope the trial proves effective so this is available in the near future for people suffering with UC. I've seen posts about the trial but I haven't seen anyone who has been in the trial :)

thanks for posting & welcome to HW.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

London Lurker
Veteran Member


Date Joined Feb 2013
Total Posts : 592
   Posted 9/20/2013 5:57 PM (GMT -6)   
Thanks for posting. I met someone once who had gone into a ten year remission from Crohn's after stem cell treatment for a blood cancer. So far I heard from a GI that the dangers of stem cell treatment can be high hence it has been used only as a last resort. Sounds like you are not getting bad side effects though in your trial?
Proctitis '84
Pan Colitis '88
No pan flare up since, many well years between mild to mod flares, some yrs without meds
Low fibre and rare alcohol
Adding resistant starch & raw sauerkraut
Currently Mezavant XL x 1 per day
Salofalk Enema x 1 per day
B complex sublingual
Vit D (ceased K2)
Molybdenum
Probiotics - started Mutaflor, VSL#3 March '13, good results so far

March '13 10 days on Flagyl

mdb33
New Member


Date Joined Aug 2013
Total Posts : 5
   Posted 10/14/2013 10:35 PM (GMT -6)   
HI supermom22
I posted before about my interest in the mutlistem trial. I have researched the company and all the tests have shown its safe. There is no trial were I live and my financial situation is not the best I was thinking of going to one of the available recruiting places to see if i qualify. Has it really been effective I know its only a 50/50 chance of actually getting multistem but i would take the risk if it was actually showing results are you still getting better? I would really appreciate your advice I am also only 27 and don't want to use drugs with such bad side effects if there is a better viable option.

BadColon
Regular Member


Date Joined Jan 2013
Total Posts : 74
   Posted 10/15/2013 6:30 AM (GMT -6)   
Thank you so very much for posting here.

This is the only treatment I've been looking forward to since my first line mesalamine meds gave such massive side effects that I had to stop them. .

Since I refused to go on immunosuppressants (I have a weak immune system) and biologics, my GI who had sent a patient to one of these trials said my chances of getting accepted were low as there were other applicants who had much bad cases of UC using all 3 lines of UC drugs.

God speed to Multistem!

supermom22
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 10/15/2013 6:41 AM (GMT -6)   
I got into the trial and have not ever tried biological or immunosuppressive drugs. I failed mesalamine sulfasalazine and uceris. Yes I am still doing great. I had my 8 week flex sig last Friday and while there are still some ulcers they are much improved and symptom wise I am in Complete remission. My iron levels have even finally made it back to the normal range after being low for months. I have not experienced any side effects and while there is always risk of side effects in the future I am so thankful to try an option that might be safer than those other nasty drugs. Furthermore to the above post about the high dangers of stem cells transplants read up on multistem....they are different than a traditional stem cell transplant. I'm more than happy to answer any other questions you guys have as I feel this may truly be a viable option for us uc people in the future.

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 911
   Posted 10/15/2013 6:41 AM (GMT -6)   
Thanks for posting, I had never heard of the site! Good luck
Left sided dx. 2011
Current med: Apriso, cortenema, nexium
Supplements: multi, calcium, VSL #3, coconut water (potassium)
Diet: no lactose, low fat, no uncooked veggies, no fruit. No honey or HFCS!! Low gluten, just because it lowers wheat! Mostly organic and grass fed meat. No nitrates.

supermom22
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 10/15/2013 6:49 AM (GMT -6)   
Also as a side note to the comment on expenses. Pfizer pays $50 for each visit as compensation for travel costs and be because I am traveling four hours to the site from my house the hospital has agreed to reimburse me additionally on top of pfizers pay.

mdb33
New Member


Date Joined Aug 2013
Total Posts : 5
   Posted 10/15/2013 8:42 AM (GMT -6)   
Thank you for your advice I will be contacting them. People sometimes bunch up stemcell therapies. If you read multistem does not replace your immune system it actually flushes out of your body eventually. They are also to make thousands of doses from one healthy patient. Thanks a lot for responding I will check with the nearest trial center thanks again for the response!!!

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3659
   Posted 10/15/2013 9:18 AM (GMT -6)   
clinicaltrials.gov/ct2/show/study/NCT01240915#locn

scroll almost to the bottom to click open the 54 locations this trial is recruiting people for.
Sounds interesting and hope it gets good results.
Current diet=modified Paleo (sm amts of swiss cheese)
In remission April 2010 after 10 years of UC with no remission ever
gluten-free (bleeding stopped) and dairy-free (less gas) started remission path+food diary
current meds=(9)Balsalazide daily (mesalamine enema only when needed)
Rx meds have never worked for me except for mesalamine enema

MikeSoCal
Regular Member


Date Joined Sep 2013
Total Posts : 303
   Posted 10/15/2013 1:35 PM (GMT -6)   
This is some good info, will have to check into it. I wish there was a closer location for me.
Diagnosis:
Severe UC, 75% of colon, Aug 2013 (30 years old)

Current Meds:
Remicade 10mg/kg - 4 Week interval
Asacol HD 800 mg - 1 tab 3 x day - 2400 mg
Prednisone 10 mg - 2 tabs 2 x day - 40 mg
Azathioprine 50 mg - 1 tab 2 x day - 100 mg
Pantoprazole 40 mg - 1 tab 2 x day - 80 mg
Vicodin 5-300 mg - 1 tab currently 3 x day - 900 mg
Ultimate Flora Critical Care 50 Billion 10 Probiotic Strains
Nature's Way Alive! Multi-Vitamin/Mineral

Past Meds:
Lialda - Stopped due to bad reaction
Delzicol - Took while in the hospital
Flagyl - Took while in the hospital
Cipro - Took while in the hospital

BadColon
Regular Member


Date Joined Jan 2013
Total Posts : 74
   Posted 10/16/2013 10:14 AM (GMT -6)   
How is multistem administered? Pills, intravenously or enemas?

X-Ray
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/14/2013 6:50 PM (GMT -6)   
Hey Supermom, Just curious as to how you are feeling one month since your last post.

pmitra0123
Regular Member


Date Joined Apr 2012
Total Posts : 165
   Posted 11/16/2013 5:16 PM (GMT -6)   
Does anyone know when preliminary data will be released on the results of the MultiStem trial thus far? When is it going to phase 3?
Diagnosed with pancolitis March 2012 - Tried all drugs - steroids, mesalamine, etc. Currently on Vedolizumab (new experimental gut specficic monoclonal antibody) Currently, my entire colon has healed except for rectum and recto sigmoid - these ares are the most stubborn for me - nothing seems to work there except for very high doses of steroids

X-Ray
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/18/2013 10:48 PM (GMT -6)   
I understand they are now recruiting there last patients and expect to report preliminary results by the end of the 1st QTR 2014. You may still have an chance to participate.

X-Ray
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/18/2013 10:50 PM (GMT -6)   
BadColon, Multistem is administered through an IV.

graham11
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/21/2014 1:31 PM (GMT -6)   
anybody else on multistem besides supermom and supermom .....how about a current update

Levi
Veteran Member


Date Joined Nov 2009
Total Posts : 1537
   Posted 1/21/2014 4:07 PM (GMT -6)   
Ineligible if you have findings suggestive of Crohn's disease.

Well kiss my red bleeding butt.

London Lurker
Veteran Member


Date Joined Feb 2013
Total Posts : 592
   Posted 1/21/2014 4:53 PM (GMT -6)   
Just seen this posted on another forum I am on - private stemcell treatment. I guess they wouldn't be allowed to operate unless they could prove a certain level of safety?

www.prweb.com/releases/2014/01/prweb11507100.htm

Gsmall
New Member


Date Joined Mar 2014
Total Posts : 10
   Posted 4/17/2014 4:19 PM (GMT -6)   
This post needs to go back up top and this lady should post us what she is feeling today.... It would be great for others, my sister, etc.. .Something to look forward too...

Gsmall
New Member


Date Joined Mar 2014
Total Posts : 10
   Posted 4/17/2014 4:24 PM (GMT -6)   
upermom22 said...
I got into the trial and have not ever tried biological or immunosuppressive drugs. I failed mesalamine sulfasalazine and uceris. Yes I am still doing great. I had my 8 week flex sig last Friday and while there are still some ulcers they are much improved and symptom wise I am in Complete remission. My iron levels have even finally made it back to the normal range after being low for months. I have not experienced any side effects and while there is always risk of side effects in the future I am so thankful to try an option that might be safer than those other nasty drugs. Furthermore to the above post about the high dangers of stem cells transplants read up on multistem....they are different than a traditional stem cell transplant. I'm more than happy to answer any other questions you guys have as I feel this may truly be a viable option for us uc people in the future.
Can you tell us where you are today. You wrote you would fill us in.... Hey MOD... She doesn't list an email address or no contact. How do we know if she is seeing the replys or questions.... It really would be helpful to get some response since it has been months... I ask because looking at the study it says everyone in the study get multistem towards the end. That would mean her too, regardless if she recieved the first time or not...
rolleyes  

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9989
   Posted 4/17/2014 8:06 PM (GMT -6)   
We don't have access to users personal email addresses unless they make them public in their profiles, sorry. I would love an update too. Hopefully she checks in sometime but i would think it's doubtful considering she's only got 3 posts.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

Gsmall
New Member


Date Joined Mar 2014
Total Posts : 10
   Posted 4/18/2014 2:23 PM (GMT -6)   
I actually did some research on it. The study results or at least part of them are due out in MAY. I also noticed it was some type of blind study where you could get either it or placebo. Actually found the FDA site on it too and pfizer whcih says it is an OFF-LABEL type of study and people dont, or were not to know "what is was"... Makes one wonder if this person was honest, really recieved it or was in a study at all. The compnaies involved are stock companies and investors are notorious liars for money.

In other words, if you were looking for good news, this would be awesome news. In fact I found this [posting] comments via MOM circulated all over the web. Refering to the fact it worked...

If true or not, let's hope so... Then again, if you actually received it and it helped, you were told not to say anything and you came here and did, why not follow up on it for others...

Money money money.... too bad...

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 1556
   Posted 4/18/2014 2:39 PM (GMT -6)   
Yes, some results are due soon. See (www.athersys.com/releasedetail.cfm?Releaseid=814793). These will be the results for any improvement during the 8 weeks following the initial treatment, compared to placebo.

A month or two later, there will be another report based on any improvement seen at 16 weeks, after getting and 8-wek booster dose.

As for OT, it is possible the OT was a venture-capital company shill, or that she only had a placebo effect and subsequently declined and got discouraged and went away.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 3-6 loose stool w/ blood, limited urgency: Lialda, 10mg Pred (dependent), sf-Rowasa, VSL DS, Vit-D/C, Omg3
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