This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Everyone, I am new to the forum. My first episode was in 1975 with Optic Neuritis, but I was not diagnosed until 1993 with RRMS. Until about 5 years ago, I did not have any significant disability, but have progressed to SPMS, so no relapses, only progression. I have never taken any meds, and have only relied on diet until now. I was accepted in the Tcelna study, and had the first infusion in August, and have had 4 so far. Next appt. is scheduled for early February. So far improvements, and no reaction to the infusions, I feel like I am either getting the placebo, or it is just not working. Visually all infusions have been clear. I have continued to progress, my as walking continues to decline, as well as bladder and bowel issues..

Hi Tippy, I was on Tcelna earlier in the year. I abandoned the trial since I didn'tfeel any better and I felt that I needed IV steroids due to various symptoms. In May, I had a major relapse that required hospitalization, steroids ( for the second time) and a trip to a rehab center. MRI's done at the hospital revealed lesions in my cervical spine. I went from using a cane to wheelchair. I am now trying to manage with a walker, although I need the chair quite often. I take Tecfidera and my neurologist recommended Rituxan which the insurance did not approved ( they consider it experimental for MS). It seems that research is looking at B- cells rather than T-cells, like Tcelna is. Good luck in your trial. For me, I can't afford the risks of double blind study in which placebo is possible

Hi xpsychiatricmd,

Thanks for the response. I was looking into having HSCT done in Russia, and was already approved when I heard about the trial and figured I would take a chance on the trial first. Some people really have wonderful results with the HSCT (Stem Cell Transplant), the earlier and more active the disease is, the better the results. I have had MS for many years and worry that it might not stop the progression for me. Lots of people are in Russia now, and I know of a few that have returned in the past 4 months, but it is really too early to tell. It takes 2 years to recover from HSCT and the recovery period is like a roller coaster going up and down. I wish you luck, and hope for all of us that something will happen soon, that will change the path of MS to enable us to have healthy and active lives.

Tippy

Has there been any news about how the Abili-T trial is going? Number of dropouts, etc...?
http://clinicaltrials.gov/ct2/show/study/NCT01684761

Maybe after this big conference call about second quarter, they'll give us some preliminary information. This is taking waaaaaaaaaaaaay too long!

http://www.opexatherapeutics.com/invest ... fault.aspx