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Nick

MS-SAT2 Trial

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Nick

I thought people might be interested in details of this trail

twitter-card-ucl-logo.png
WWW.UCL.AC.UK

For people like myself who are SPMS this seemed very interesting and I am currently on this trail. Let's wait and see what happens! 

Being on any trail does have the benefit of having closer contact with neurologists and of being monitored more closely that would otherwise be the case. This is I feel very beneficial to me and even if I am simply on the placebo, or that the outcome of the trail is unsuccessful, the net benefits are clear.

 

Nick 


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Just another Warrior...........

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Procrastinating
Stumbler

Thanks for bringing this to our attention, @Nick .

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Crappy
Marina

I was on the initial MS-STAT1 Simvastatin trial back in 2009. Unfortunately, they took me off it due to possible side-effects... which was rather disappointing as there's not really anything else for SPMS, at least not for non-relapsing SPMS.

 

You're right about the more frequent monitoring etc. I was interviewed for the trial by Dr Jeremy Chapman himself (lovely man, one of the main neuros of the trial), had several MRIs and a long cognitive test and various blood tests, etc, that I normally wouldn't have had. The result of the cognitive test had me a bit surprised at the time as it showed I had "moderate" problems when I didn't think I had! Although I've since become slower and more mentally fatigued, so I'm not sure I'd like to take it again and see what the results would now be.

 

It also just goes to show just how long these trials can go on for, given that MS-STAT1 started 9 years ago, when I joined it. Regardless of how the statins affected me, or rather how they may not have affected me as I've no idea if I was on the placebo or not, I'm sure we'd all like to see it prove to be a success for the sake of all people with SPMS.


Marina

(belated DX in June '05, SPMS)

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Nick

Hi Marina,

 

I only just managed to get on the present trial........due to age!!  It started and then due to corvid19 had to be delayed, so the process has only just started again.  I'm involved via my local hospital as a trip down to London would be too much for me. Talking to the neurologist in charge here, I was surprised at how important the trial is seen to be.  It seems incredible that a common drug such as a statin could make any difference!  So far no side effects but it's early days.

 

Nick 


Just another Warrior...........

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Crappy
Marina

My interview with Jeremy Chataway was in a London hospital (either UCL or Charing X, I don't remember which), with a paid-for taxi there and back. The rest was in a local hospital that specialises in Epilepsy as they had advanced MRI machines, apart from the cognitive test which was in a local hotel (I think). Like you, I wouldn't have wanted to go to London each time, although I'm much nearer to it than you. At the time, I was also OK re age; I don't think I would be if I were to ask to go on it now.

 

I seem to remember that my side-effects came on relatively early. I might be wrong, but I think not that many people either dropped out or were removed due to side-effects. So, hopefully, you should be OK!

 

This older articles explains more about the trial for those who are interested:

 

MS_RGB_col_300px.png
WWW.MSTRUST.ORG.UK

Small study suggesting high doses of simvastatin might be a treatment option for secondary progressive multiple sclerosis - MS Trust research update

 

therapist%20with%20patient_1.jpg
WWW.MSTRUST.ORG.UK

Large scale trial has been announced to investigate effect of simvastatin on secondary progressive MS (MS-STAT2).

 


Marina

(belated DX in June '05, SPMS)

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