My wife has been suffering from PSP for several years with the first symptoms appearing in 2006!
Apparently it is a slow evolving form of PSP. Was not diagnosed as such until about 18 months ago.
Have been looking on internet for any trial or treatment that would be applicable.
Found several clinical trials but only 2 based on medecine already commercialized: nilotinib used to fight leukemia. Hence some negative side-effects such as the loss of immune defenses. And Salsalate, an NSAID with less negative side-effects.
Reference of the salsalate clinical trial:
A 6 Month, Open-Label, Pilot Futility Clinical Trial of Oral Salsalate for Progressive Supranuclear Palsy : ClinicalTrials.gov Identifier: NCT02422485
The product is available only in the US and only on prescription.
We decided to go ahead with the salsalate. We will start next week, first with one pill aday of 750mg, then 2 pills a day and after a week 3 pills a day. We intend to keep this dose for 3 months.
There was a post a few months ago by somebody who tried that as well with no results.
So we are not too optimistic but what else do we have?
Just waiting and see the symptoms getting worse month after month is not a nice option.
If some people get positive feedbak with the nilotinib, I guesswe would start that also after we finish the try with Salsalate;
So obviously we are very keen to get info from anyone trying one or the other.
The other clinical trials based on new molecules will not be available before 2 or 3 years even if they are extremely positive. And I am afraid what is lost in the brain will be lost for ever. So trying somethin earlier is anabsolute must;