Progressive MS Pipeline

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

Postby shah » Mon Sep 01, 2008 4:00 pm

ladystewart wrote:I am SPMS and sent information to go to Johns hopkins for Cyclophomide. They sent me information that showed a lot of SPMS individuals but--JH told me that they were accepting RRMS. What?? They could not explain.

I am a female and I have 2 sons-my mom had MS--but I don't want my sons to go through what I did. I don't want them to wipe my butt etc. HELP :!:


I did 6 months of Cyclophosphamide at a monthly rate of 1000mg, while dignosed as a RRMS case that failed TY. Since I hardly showed any improvement after the 6 month treatment, I was upgraded to SPMS.
I'm currently taking Copaxone+4-AP+Rilutek+LDN+IVSM (monthly) and seem to have been stabilized. The next big gun for me will be novantrone,
which has shown to be more effective in progressive forms of MS.

what a ride..

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Postby notasperfectasyou » Mon Jun 08, 2009 6:13 am

You might want to check with Sarah, but I think that ABX is working for folks with SPMS. At least it is for Kim.
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Postby SarahLonglands » Mon Jun 08, 2009 6:41 am

There are lots of Sarahs, but only one Anecdote. :wink:

Ken is correct, though: many people are using CAP antibiotics for SPMS, like his wife, Kim and also like me, except I have now finished treatment because it was so successful. Have a look at the Antibiotics forum and also send a PM to Katman, who found this treatment very successful for her PPMS.

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby dignan » Fri Aug 28, 2009 4:47 pm

I added PI-2301 to the phase 2 list based on THIS post from scorpion.
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Husband is on the FTY 720 trial phase III PPMS

Postby Astrid » Sat Oct 03, 2009 8:14 am


My name is Astrid and I am from The Netherlands.
My husband (Rob) is diagnosed with PPMS in August 2006.
Since January 2009 het is on the new FTY 720 trial for PPMS.
We are 41 en 45 years old, no kids, own business wich I run on my own now.
Rob is getting worse everyday and we think he has side-effects from the FTY (thinking because in this trail you are not sure if you are on the drugs or not).
His EDSS score is 5.0, he doesn't feel his feet or legs, arm and hands but stil can walk about 200-300 meters.
He cann't coordinate his right hand anymore and his left hand is getting worse. He always has tintling (is that the right word?) sensations all over his body and his legs and arms feel very heavy and painfull.
Het had to quit working 2 years ago and is very tired.
But... we still try to enjoy life and when it is possible we go to parties, out for dinner or to friends.

I'd like to know if there is anyone out ther who is on this new trial for PPMS.
How are you feeling?

Thanks and I hope to hear from you!
We try to continue oure life
My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands
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Don't mean to sound so dim but...

Postby jam » Sun Apr 03, 2011 4:32 am

marcstck wrote:I've heard their will be a FTY720-PPMS trial starting later this summer, based on the supposed neuroprotective properties of the drug...

This is an old message I know, but I don't know is has there been any further progress for pp ms? Any hope would be welcomed. I try not to get too caught up in all this but praying it will just happen, when is the probelm!

I am a Kiwi so progress is a little slow here.

The other issue I guess will be the expense once it is converted to NZ dollars.

Thanks for listening.
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PPMS Trials

Postby Smilingface » Sun Apr 03, 2011 5:24 am

Greetings from NC Jam! I have been in the fingoliomod trial for a year with
positive results. My energy level has greatly improved and my neurological
testing is showing increasing strength. I feel like my progression has halted.

Fortunately, my side effects have been temporary and minimal.

Any word from anyone in Europe? The trial started there earlier by 2 years.

I am hopeful that this drug will help all of us who progress and are without
Disease modifying treatment. There are other PP MS trials such as idebenone going on but I have no knowledge of anyone participating.

Keep your hopes up. :)
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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Postby patientx » Tue Apr 05, 2011 6:37 am

From a quick check of the site, it looks like the fingolimod trial for PPMS is still ongoing, and they are still recruiting: ... %22&rank=2

Also, they are recruiting for the Idebenone trial: ... x?nid=4502

This says they may cover travel expenses, so if nothing else, someone could get a trip to the Washington DC area out of it.
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Re: Progressive MS Pipeline

Postby xpsychiatricmd » Sun Feb 10, 2013 3:21 pm

I would add Tcelna (old Tovaxin ) to the list with the Abili-T trial. I see that it hasn't been updated in a while.
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Efficacy and safety of Siponimod (BAF312) in SPMS patients

Postby seeva » Sun Jan 19, 2014 4:11 am ... uration-st
HI FRIENDS This new drug SIPONIMOD for SPMS Patients the trial due to recruiting people with SPMS until may 2014. trial in sydney difference hospitals details in the website
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Re: Progressive MS Pipeline

Postby 1eye » Sat Jan 25, 2014 10:12 am

This is a pretty recent one (2014?):

Human endogenous retrovirus (HERV) genes represent about 8% of the human genome. A member of the HERV family W, the Multiple Sclerosis-Associated Retrovirus (MSRV) gene, encodes an envelope protein (Env), which can activate a proinflammatory and autoimmune cascade through its interaction with Toll-like receptor 4. Due to its proinflammatory property and an inhibitory effect on oligodendrocyte precursor cell differentiation, the MSRV-Env protein could play a crucial role in the pathogeny of multiple sclerosis. GNbAC1 is a humanized monoclonal antibody of the immunoglobulin G4 type, which is directed against MSRV-Env. After validation of the MSRV-Env as a therapeutic target in preclinical experimental models, a clinical development program was initiated.

This study evaluated the safety profile, pharmacokinetic parameters, and immunogenicity of GNbAC1 in healthy male volunteers.

In this first-in-humans, Phase I, randomized, double-blind, placebo-controlled, dose-escalation study, each subject received a single dose of IV GNbAC1 0.0025, 0.025, 0.15, 0.6, 2, or 6 mg/kg or inactive vehicle (placebo), infused over 1 hour. Tolerability and other laboratory parameters were observed, and regular blood sampling was performed, to study the pharmacokinetic properties and immunogenicity of this monoclonal antibody.

A total of 33 male subjects (mean age, 44 years) completed the study. GNbAC1 was well tolerated after dosing in all subjects and in each dose cohort. Only minor and nonspecific adverse events (AEs) were recorded; no serious AEs were reported. Pharmacokinetic data show a dose-linear pharmacokinetic profile. The mean elimination half-life ranged between 19 and 26 days, with therapeutically efficient concentrations maintained over a 4-week periods at doses of 2 and 6 mg/kg. No emergence of anti-GNbAC1 antibodies were detected after dosing in any subject over the entire observation period of 64 days.

In these healthy male subjects, the safety and pharmacokinetic profiles of GNbAC1 appeared favorable. These findings are expected to allow for the launch of a Phase II development program for this innovative therapeutic approach in patients with multiple sclerosis. identifier: NCT01699555.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Re: Progressive MS Pipeline

Postby vw35qrt » Sat Jul 19, 2014 6:19 pm

They are testing an over-the-counter antihistamine, Tavist, to promote remyelination. It is being tested on relapsing remitting patients, but I can't think of a reason why they don't try it out on people with PPMS. The generic of this product at any drugstore is called Clemastine. I'm thinking about trying a dosage of Tavist out for 3 months taking two 4mg tablets daily. Has anyone tried it and had any improvement in symptoms?
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Re: Progressive MS Pipeline

Postby CureOrBust » Sun Jul 20, 2014 12:29 am

vw35qrt wrote:They are testing an over-the-counter antihistamine, Tavist, to promote remyelination. It is being tested on relapsing remitting patients, but I can't think of a reason why they don't try it out on people with PPMS.
I am guessing, but they would wish it to show its best results (if any) and RRMS would be mostly Myelin damage, where PPMS has more axon damage, so coating with Myelin wouldn't help. Just a guess.
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