MS-SMART drug trial after 92 weeks
MS-SMART drug trial after 92 weeks
Its almost 92 weeks since I started the MS-SMART drug trial. The time has flown by. The trial as been straight forward. Just pop a pill every morning and again in the evening. Well almost every evening, sometimes when I go out in the evening I forget to take one with me and when I get home I also forget. But hey, after 92 weeks I’m allowed the very occasional lapse.
The story of my MS
As I’ve said many many times my multiple sclerosis advances ever so slowly. I don’t think I ever suffered the typical relapsing remitting symptoms. I am sure it all started in 1972. A couple of relapses happened and I didn’t know the underlying cause. Who did in those days?
I mentioned a one-off attack of double vision to my brother in 1994 and he told me to go to the doctor, not suspecting an MS diagnosis, and the rest is history. I think I would eventually have gone to the doctor because of my ongoing bladder problems. The real question is this. Would the medical world have made the leap to a diagnosis of multiple sclerosis? Who knows?
MS-SMART drug trial after 92 weeks
So here I am, medically retired in 2012, a tad frustrated and thoroughly disabled. Its called advanced MS. I started the trial in January 2016 and here we are November 2017. The $64 million question. Has the trial been a success? Is there less brain shrinkage for people who have been taking one of the drugs in the trial?
Who knows
I really don’t know if it has been a success and that is the honest truth. Yes I have become more disabled in the last 92 weeks. No sense of balance. Power of concentration has definitely waned, I am even a bit moodier than I used to be. Doing up buttons is definitely harder. The question is very simple.
Has my brain shrunk?
I can still do a Sudoku. MrsB and I go to exhibitions at museums and we go out to restaurants. We enjoy going to concerts, films and the theatre.
What has changed
I’m fairly certain my short-term memory has got worse but I can’t remember how bad it was. In the spring of 2017 an en-suite wet room; clambering in and out of the bath for a shower became impossible but I could manage that in January 2016. Oh yes I forgot, my bladder deteriorated to the stage where I now have Botox injections. The first one was in February 2017 and I am awaiting the next one.
Another problem
Double vision has definitely got worse. I have had to stop reading books for pleasure. Instead I use Audible, an app on my mobile phone. I enjoy hearing someone read the book but I have been known to fall asleep at night with the headphones on. Minor inconvenience but overall I enjoy the stories so much more.
So what next?
Participation for everyone in the MS-SMART trial will have finished by spring 2018. The plan is to publish results in the autumn of 2018.
There is a rumour that if any of the three drugs in the trial are any good then they will be offered to those who were in the trial. So watch this space.
Yes, I was told that I would be offered the drug if any were proved to be effective.
I will miss my trips to Queen Square, even having the lumber punctures weren’t as bad as I anticipated and I always treated myself to breakfast or lunch when i went there.
Hello,
Since the trial have you noticed any changes in the MS?
For me its the physically things that have got worse, walking, balance, fatigue, foot drop has started in my right leg and loss of sensation in my finger tips. My mental capacity and intelligence have not been affected. For me it is not easy cos progress is so slow. At the end of the day it is down to the measurable changes that are used to determine the success ore failure.
Just got to see what they say next year.
“I will miss my trips to Queen Square”
I completely agree. I was candidate 20009, so probably the ninth person on the trial. The staff were brilliant, mostly Italian, but as I am half Italian myself it was brilliant. A big thanks to Vanessa and Tiggy.
I was on Amiloride, fairly obvious because it is a diuretic and I lost 2 kilo’s within a week. Unfortunately Amiloride slowed my walking down a lot, and I had to come off it. However I stayed on the trial through to the end because of everything the staff were doing. Essentially I became one of the placebo takers, even though I didn’t take any tablets at all. I was given copies of my MRI scans, and was hoping to see if there had been any new lesions over the period. I haven’t seen any, but am trying to find software that can do the comparison for me. Anybody out there know of any?
Anyway, I didn’t realise that we would be offered the most successful of the drugs on the trial, so will look forwards to reading the results later this year.
Hope everything goes well for you.
Hello,
The staff at Queen Square for the SMART trial were great. #they are also exceptional at the physio dept. I really enjoyed talking to them. No idea what drug I was on. I also have copies of my scans, try talking to your consultant about seeing your scans.
Hello,
Staff at the trial were tremendous, same in the physiotherapy department Not too sure what drug I was on and if it made a difference to me. Awaiting to find out results with keen interest. My MS is very much a slow burner, diagnosed in 1995 but continued working until 2012. Only real problem is mobility but I know cognition has suffered recently.
As they say, you have got tro look forward and up.