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;
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loustalet
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Wow good luck. Did you have to sign up for the study or just request to be on drug? B and I are going to see the dr. soon. We will talk with her about Nilotinib and Salsalate. We also signed up for a study. Have not heard except that they acknowledged us. Right now, anything orally is a near death experience every time. We are down to essential pills only. So I'm not sure B would be a good candidate, . At any rate this is the kind of thing that should be in a database for PSPers to access in the future.....(note post, "What if we did our own Study")
We do not live in the US. So I decided to test it outside their clinical trial in which there was zero chance to be incorporated in.
I hope everybody testing the 2 commercial drugs (Salsalate and Nilotinib) outside the official clinical trials will and do inform the readers of this site what results they get if any!; There was one post on salsalate with zero results. But there may be different mecanisms and origins of the PSP, itself sometimes poorly diagnosed. So that did not stop me.
For sure I will post the results of this experience on a regular basis.
Sadly the probability is that we do not observe anything. May be these drugs slow down or even stop the aggravation of the problem. But the possibility that we observe a decrease of the symptoms is very low.
I will be using the PSPRS (PSP Rating Scale) to see if I can identify any change.
No I did not sign up anything. I do not live in the US. I just managed to get the drug and started the treatment with the agreement of our neurologist.
I will post any result we observe, positive or negative. And forward them to Adam Boxer as well although I found them not really ready to listen to any try made by patients outside their research organization.
I came across the comment regarding very positive results (in terms of symptoms) by using the "Nerve Support Formula" from RHP Inc. Amazing.
See below for the reference of the product.
No negative side effects. I will order some via Amazon and start it as well. Have you seen the discussion about that? What do you think?
That was probably my post. I had my wife try it for 3-4 months, and we never saw any slight improvement, only continual progression of this nasty disease. But definitely worth trying. Make sure she takes it with a lot of water and food. The morning dose is a double strength of the drug (2 tablets). I was able to crush it and mix it with her Jevity tube feed. Didn't seem to bother her tummy. I tried 1 tablet on 2 different occasions and my stomach cramped for hours.
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How do you get into clinical trials?
Mary B.
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