SPMS and Siponimod

This report was in our paper in the uk. Is this something new to you all or am I giving you old news. The trial involved1651 people with SPMS this drug was shown to reduce the risk of disability by 21%. It also significantly reduced the rate of brain shrinkage and the number of relapses people experienced. If you want to know more I would be happy to let you know, but again I don't want to be telling you what you already know, we appear to be alittle behind in the uk. God bless Jimeka

7 Replies

  • Jimeka it's Fancy1959. I am not sure of the drugs name but there is the first therapy specifically dedicated to MS patients with Secondary Progressive MS , to be released early next year. On top of that the stem cell research is also showing wonderful benefits in controlling and even reversing the effects of MS by people affected by.it. Both actually show that in some people affected by MS there is an actual improvement of systems. For some the Improvement are dramatically better. Which leads us to hope the Myelin is being repaired somehow by the new Therapies! Come on Researchers we are counting on you! Remember together we are stronger! Fight on MS Warriors, fight on!

  • I hadn't heard of this but a quick search came up with an NCBI report of a phase 3 trial with small sample size (234 X 24 months) with promising results. No discussion of side effects. Do you have added info? Tia

  • Hi Erash, I have just written a response to Cwaker, he has actually been part of trials, so if you read Cwaker,s response it might give you more of an idea. Cheers Jimeka

  • It works on S1P receptors, similar to Gilenya. Not sure if paper with full side effects has been published yet. Mostly just seen the preliminary results on various websites.

  • I am so tired of DMD'sbtreating symptoms!!! I want a cure‼️

  • Hi Jimeka, it's cwacker, I was on the double blind study for 18 months and it has shown great positive effects for secondary progressive! While I don't know if I actually had the drug I did feel pretty good while on it! My walking even improved ;) but, in March that phase of the study was complete and they are now studying the long term effects and everyone chosen to remain will all receive the drug. I was told this phase will last for 5 years. I was not chosen (maybe my age? I'm 60 and I got in just under the wires 2 yrs ago) since I've been off my walking has become more bothersome and have an appt to go to a neuro. Siponimod pulls the lymphocytes into the lymph nodes where they rest and not have the freedom to damage the mylen (easy explanation as told to me) the concern was heart issues, and therefore taking a smaller daily dose was being tested along with checking to see how fast it leaves your body. I did not have any issues, except with some dizzy spells when first taking it, but I I'm prone to that off and on anyway so can't say it was the drug or not. It looks VERY promising and I hope it becomes available sooner than later!!

  • Hi Cwaker, thank you for replying. I have PPMS but my daughter sent me the clipping to share with you guys in the states. She is a nurse and is always researching ms for me. Tries to keep me upto date, bless her. Anyway the article states that the drug works by stopping immune cells called B and T cells from getting into the brain and spinal cord where they can cause damage to the myelin. It is a tablet that is taken once a day. It is being developed by the pharmaceutical company Novartis, they are going to finish analysing the results, then publish them in a scientific journal, . Before being available the results will have to be submitted to the European medical agency to begin the licensing process. The treatment will then be evaluated by NICE who will decide whether to make the treatment available on the NHS. That's all I can tell you right now, but at least there is hope and you guys in the states will probably get it before us. God bless Jimeka

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