After finishing the MS-SMART drug trial

After finishing the MS-SMART drug trial

Do antioxidents slow SPMS

I was a participant in the MS-SMART drug trial. If you look back over the blogs I wrote while I was on the trial my MS didn’t seem to get worse. A big question comes was after finishing the MS-SMART drug trial. Was I on a placebo, a treatment with no active therapeutic effect, or did the drug work?

During the MS-SMART drug trial

My walking ability remained pretty much the same. I still had the odd fall but nothing terribly serious. Double vision was always there but I lived with it quite happily. Writing was a bit scrappy but I didn’t notice any changes.

After finishing the MS-SMART drug trial

I popped my last pill in November 2017 and for the next three months nothing really seemed to change. Then little isolated events started to happen, I didn’t give any one of them a moment’s thought. It’s difficult to put isolated incidents into a coherent story except with the benefit of hindsight

Looking back

I can identify changes to my MS and it starting up again about 4 months after finishing the MS-SMART drug trial.

The distance I can walk dropped significantly.

My balance got worse.

Writing a few items on the shopping list and my handwriting trails off into an illegible scrawl.

Double vision gets worse

I’m sure some of it was linked with the stress of putting together my PIP benefits form.

Away from it all

Now I’m on holiday in France. The stress has suddenly melted away but the niggling problems with my MS stick stubbornly with me. The biggest problem is fatigue, I’m always aware of it. I’m going to bed earlier and I find it harder than ever to get up in the mornings.

MS-SMART drug trial results

The endpoint of the trial was to see if one of the drugs could slow down neurodegeneration. Golly ‘neurodegeneration’ that is a long word, instead think ‘shredding of the brain’.

It could have been an interesting exercise to re-evaluate the patients six months after their involvement in the trial had ended.

No luck with Cladribine

I now know my MS is not active enough to receive off-label cladribine. MS-SMART drug trial results have not yet been published, will they be conclusive? I know I have the pesky little disease, multiple sclerosis, so I must think out of the box.

A lucky moment

I stumbled across an article on the website “Mirandasmsblog.com” published in December 2016 https://mirandasmsblog.com/2016/12/29/lipoic-acid-for-ms/ talking about antioxidants. They seem an effective way of preserving the brain and stopping the shredding.

I don’t expect my MS consultant to advocate me taking lipoic acid because there is no clear-cut evidence that it works. To be honest a phase III trial is unlikely so I must take my chance this time.

This is not a cure. In fact there is no cure for progressive MS so maybe this is as good as it gets. Let’s go for it.

Associated articles

MS-SMART trialMS SMART trial

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Another milestone in the inevitable progressionAnother milestone in the inevitable progression of my MS

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June 2018

2 responses to “After finishing the MS-SMART drug trial”

  1. Tessa says:

    Hi Patrick ..just seen the recent tweet from Stornaway and the talk about think hand ..if people like you and probably me are not going to be allowed cladribine it is rather annoying in my opinion to keep receiving all this stuff! Sorry just cross and frustrated . Either a person has ms or they don’t . All this you don’t qualify because.. is just equivocation . As you rightly said “do I have ms then” .i wonder !

    • Hello Tassa,

      I both feel and share your sense of frustration. This feeling is made even worse by the announcement of the new trial ORATION HAND by Roche using Ocrevious for people with advanced MS but originally PPMS. I thought advanced MS was advanced MS whether it started as CIS, RRMS or PPMS I have just put a comment on the Barts MS Blog.

      I know some sort of treatment exists to slow down or stop progression in my case but there does not seem to be the will power. I am sure I am not alone.

      Sorry, RANT OVER

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