I started the MS Smart trial
Queen Square and the National Hospital for Neurology and Neurosurgery in the 1960s.
On 7th January 2016 I started the MS-SMART drug trial. 3 drugs are being tested and the hope is that at least one of them will stop neurodegeneration. If you are not too sure what this means then call it shredding of the brain. People with Parkinson’s and Alzheimer’s suffer from the same problem. Three existing drugs are being compared in the same trial and the result could be the repurposing one of the drugs. At the moment there’s nothing that can stop the accumulation of disability in people with secondary progressive MS.
I started the MS Smart trial
So many clinical trials use a placebo so the effectiveness of the new drug can be compared and measured. Normally you have a 50-50 chance of being on a placebo. In this case there is only a 1 in 4 chance of being on a placebo. So that is better news but no one really knows which is going to be the best drug.
I have been given the pills
I left /Neurological hospital in Queens Square with 35 pills, one to be taken daily. I have to keep a diary of any funny feelings and when I forget my medication. There is a bewildering array of side effects. The wife says that I have most of them already. I’m sure she is joking.
Side effects
Some of them I have never even heard of. Take xerostomia, a Greek scholar will tell you that it means a dry mouth or diaphoresis which means copious sweating. I admit not to feeling my usual self but these feelings are not amongst the known side effects but it’s early days.
Sub trial
A number of other trials are being run alongside the MS Smart. One of them is to record the number of neural filaments in your cerebral spinal fluid (CSF). It allows objective assessment of MS progression. The fluid in the spinal cord and is extracted by a lumbar puncture. I volunteered for this part of the trial.
Oh dear
It is the thought that hurts not the process, I am speaking from experience. Just as they were starting to insert the needle to extract the CSF I had to bottle out. I felt as if I was about to throw up and also very faint. I have developed a fear of injections after insertion of a cannula went horribly wrong during the Ascend trial in Spring 2014.
So there we have it. I started the MS Smart trial in January 2016 3 drugs are being tested in one trial. More soon.
How do I win this lottery of getting onto trials?
Who do I need to know?
I’m happy for all on these trials but very envious and angry that Iife has already dealt me the s@@t MS card but not content with that it’s the PPMS one and it’s being rubbed in further by being deemed not lucky enough to get on any trial.
Never mind, I will just remain in the PPMS isolation area and just rot away
Hi,
One drug called ocrelizumab (Ocrevus) can do this for some people with early primary progressive MS. Speak to your consultant. Check out tis page https://www.mssociety.org.uk/about-ms/types-of-ms/primary-progressive-ms
Good luck Patrick. How’s the new Travel scoot going. Thanks for the excellent info. I might convert to one
Its a long trial, 2 years and its not a cure. On the other hand only a 1 in 4 chance of being on a placebo. It is something to keep me busy and out of trouble
i could not live without my Travelscoot. The great thing with it is that other people do not think of you as a disabled person. Kids want to have a go on it. Its great fun to ride
Best of luck with the trial Patrick! How long does it last? I presume you’ll be posting updates on here!
I know what you mean about the needle, I recently had 2 teeth out at the same time and both the thought of the needle and the actual action itself brought me out in a cold sweat! The dentist is great and he manages to perform the injection without any pain, it’s just the thought of the needle going on and on into the soft flesh of my gums which is the horrible part!
The trial lasts for two years. Of course I will be posting updates. The trial itself is just a matter of taking a pill every day. It goes upto 2 pills a day in February. To be honest I don’t think anything amazing will happen, my MS progresses incredibly slowly. Lets just watch this space
I still feel odd thinking about the lumbar puncture. Its the thought that put me off, even now I feel queasy thinking about it. None of the staff at the Neurological hospital in Queens Square would have an LP and that included the doctor who was doing my LP. Desn’t really inspire you with confidence. On the other hand maybe they were being sympathetic 🙂