FTY720 in Patients With Primary Progressive Multiple Sclerosis (INFORMS)

As a follow-up to our previous posting on the impact of FTY720 or Fingolimod on brain atrophy. Good news! After several months of logistical issues we finally randomised and dosed our first patients in the FTY720 PPMS trial.

“It is good to be able to finally offer our patients with primary progressive MS the possibility of being enrolled in a clinical trial. For once I don’t feel like a therapeutic nihilist when it comes to PPMS.”
CoI: Dr Klaus Schmierer is the PI at our site, I have received personal compensation for sitting on a steering committee for the phase 4 development of Fingolimod and we have received grant support for work on our animal model from Novartis who market Fingolimod. 

8 thoughts on “FTY720 in Patients With Primary Progressive Multiple Sclerosis (INFORMS)”

  1. The neurologists at the Walton Centre in Liverpool seemed rather unenthusiastic of Fingolimod’s ability to benefit ppms sufferers. You stated previously that there are a myriad of potential compounds that have neuro-protective potentials, therefore where are these options for ppms patients? Time is not on the ppms patient’s side. Surely there must be a desire to get something to the ppms community sooner rather than later.

  2. As a young woman in her late-20s who has had PPMS for the last 6 years I have to argue that the lack of empty rhetoric on part of researchers in relation to potential therapies is disheartening at best; dishonest at worst. My neurologists have practically given up on me most likely because there is nothing they can do. I get worse, the NHS gets idler. I now have to accept this is the way things are and they’re not going to get better. If there was something that could be done then I think British neurologists are too feckless to bother to do it. The neurologists have a perennially flummoxed expression when it comes to giving answers for PPMS. I feel that I am working so hard to contend with this condition yet the neurologists paid by my taxes are not working near enough as hard. Not happy about the current state of things.

  3. I was watching “Inside the Human Body” on BBC1 last night and they showed some American guy having hand transplants. Like seriously, this guy was transplanted with the hands of another man by a team of neurosurgeons and it was a success. It was a miracle. To me that procedure looked far more complicated than having to fix myelin and axons in the Central Nervous System. The actuality they can do something like that yet can’t fix the damage caused by microbes in the brain and spinal cord is just simply beyond me.

  4. Re the opinion of neurologists re treating PPMS. I think they should give Fingolimod a chance. When you look at the biology of sphingosine-1-phosphate modulators and the emerging data on the effect of fingolimod on remyelination in several animal models and the impact it has on slowing down brain atrophy in RRMS it has more than a fair chance of being effective in PPMS. The bottom-line is unless we test these drugs we will not improve the lot of people with PPMS.

  5. Re the comment about hand transplants. I agree that it is amazing, but the hand was used in the transplant was already made. All the surgeons had to do was connect-up the relevant pieces; bones, veins, areteries, nerves, tendons and skin. I agree this is a technical tour de force, but the real miracle lies in the years of research and testing behind the cocktail of immunosupressive drugs recipeint has to take to prevent his immune system rejecting the hands. Unfortunately, repairing the brain and spinal cord is going to a lot more difficult than performing a hand transplant. At the moment we are only getting to grips with biology of repair.

  6. Re the comment about "neurologists paid by my taxes are not working near enough as hard. Not happy about the current state of things". Some of us are trying. The problem we face is that the levels of expectation are so high it is hard, or almost impossible, to satisfy them. Please remember that in MS it takes about 15 years from discovering a potential DMT or therapeutic strategy to get a drug to market. In progressive MS this will be slower because the current phase 2 trials are so much longer than those required for RRMS. This is why I am trying to promote the concept of using CSF neurofilament levels as an outcome; this will make phase 2 progressive trials much quicker to do. To achieve this aim we need PwMS to understand and be prepared to have serial lumbar punctures. Please don't give up hope; your hope is what moitivates us to work so hard.

  7. Must say i didn't like having a lumber punture. Mine went wrong and I began leaking cerebral fluid from my spine which gave me the worst headache ever. I vomitted on the tube I was so ill. Saying that, if there was a drug that could help my ppms I'd do that lumber puncture 10 times over.

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