ASCEND, Whoops We Got It Wrong Again
ASCEND drugs trial of Tysabri or Natalizumab was seen by many people as the drug to stop SPMS progression. It was a disappointment. I was on the ASCEND trial for two years and finished in October 2014. A year later Biogen, the manufacturers of the drug announced ‘Natalizumab … did not meet its primary and secondary endpoints …’. In other words it was a failure Very disappointing because it is a very good drug, at stopping progression if you have RRMS.
I thought I was on a placebo
This was because the progression of MS continued during the trial. In fact towards the end I said that if I was on the drug then it was not stopping my progression. My walking did not stop deteriorating and to measure mobility was one way to see if the drug was a success or failure. I think it is best if you read my entry for the ASCEND trial from week 108 when the trial was over. With the benefit of hindsight I could have been on either, I will never know
There was some good news
Progression of the disease that affected upper limbs was slowed down. My upper limbs are not affected by MS so this side of the trial was irrelevant to me.
Waste of time and money?
I am left feeling a bit depressed by the failure of this trial. There has been a lot of clinical research into treatments for people like me who have SPMS. So far nothing has been discovered that can slow down the progression of the disability. Could these be the reasons?
- The researchers have not found anything that is worth putting forward to the pharmaceutical companies for clinical trials
- The pharmaceutical companies have not seen it worth their while to take a punt on a possible breakthrough
- There is a cure out there but there is no financial return to be had on the cost of puting a drug through clinical trials that is out of patent
Whatever the reason it is all a bit depressing. Oh well back to the drawing board.
This really makes my blood boil.
So sorry all the effort came to nothing, I have been part of the movement to get the link with blood flow and MS recognised here in the UK so I totally understand your disappointment.
As you say ‘no patent, no cash, no interest.
I’ll just keep on with a healthy diet, as little stress as possible and the HBOT.
Good luck and good health.
Yup the ASCEND trial failed to reach its primary end point but it looks like it helped to preserve upper limb functionality. Take a look at the Barts MS blog http://multiple-sclerosis-research.blogspot.com/ and look up the results of the trial at the recent ECTRIMS conferance. The thoughts of ProfG on this are very interesting.
Things are moving forward for SPMS but it is a slow process plus medicines take longer for people with SPMS than RRMS to show any slowing down of the rate of progess, a double whammy.