Lingo history

A board to discuss future MS therapies in early stage (Phase I or II) trials.

Re: Lingo history

Postby Lars » Tue Sep 20, 2011 8:08 am

I'll try to answer the questions that I can. The trial is being held at Immuno E in Centennial Co. 64 patients, groups of 6 with various levels of "drug" My group was the last and highest dosage, 100mg I think. The trial is scheduled for 4 months with 2 extra months saved for ???? reason. 2 infusions in the first month then tests and monitoring thereafter. I don't know what the EDSS cut off was but I don't think there were many with very high ones. Remember, it's about safety at this point and lesser affected patients are easier to put through so much testing....and there is a LOT. I saw no adverse reactions from any of my 6 and from what the staff is allowed to share the same results were seen in all groups. There seemed to be at least 1 case of nearly miraculous results which is exciting and hopeful but this isn't my first rodeo so to speak and the placebo effect can be huge in certain patients. I notice no difference personally. I think they are thrilled with the testing so far and Phase 2 is under way and will be coming to a clinic near you! I also think European sites will be involved. For those of my friends who suffered and are still suffering through Tovaxins funding problems, no worries here....Biogen!
Be Well,
Lars
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Re: Lingo history

Postby L » Tue Sep 20, 2011 8:22 am

Thanks for the information Lars. So you have had both transfusions already? Do you mind me asking, how high do you yourself score on the EDSS?

Nearly miraculous results are very welcome, I must say.

Thanks again, it's great to receive this first hand insight!
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Re: Lingo history

Postby jay123 » Fri Sep 23, 2011 10:48 am

I don't understand why this one would be just for r-r. It seems like this would be a good trial for progressives.
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Re: Lingo history

Postby Smilingface » Sun Oct 09, 2011 7:29 am

Greetings Lars and others! Any change in your status Lars? Are there any exercise, physical therapy advice you can give us? Any idea of timeline given to you for improvement by study folks? How often are you being checked now and what are your neuros checking you for? Thanks and hope my questions aren't too pesky.......Lingo gives me hope. I have been very lucky with Gilenya so far in slowing progression but I believe repair and restoration of motor function will have to come from a different drug.
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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