Multistem trial for moderate to severe UC success

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.

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?

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!

Thanks for posting, I had never heard of the site! Good luck

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!!!

This is some good info, will have to check into it. I wish there was a closer location for me.

Hey Supermom, Just curious as to how you are feeling one month since your last post.

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.

anybody else on multistem besides supermom and supermom .....how about a current update

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

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...

 

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...

Athersys MultiStem Works - I have no idea why the clinical trials show failure? Who else was in the Trial and showed a long term benefit like I did (2.5 years)