Drug trials

Posts on the drugs trials where I have been a participant. These are all double blinded controlled drug trials with a placebo

After finishing the MS-SMART drug trial

After finishing the MS-SMART drug trial

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 […]

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MS-SMART drug trial after 92 weeks

MS-SMART drug trial after 92 weeks

Its almost 92 weeks since I started the MS-SMART drug trial. The time has flown by. The trial as been straight forward. Just pop a pill every morning and again in the evening. Well almost every evening, sometimes when I go out in the evening I forget to take one with me and when I get […]

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Penultimate visit for the MS SMART drug trial

Penultimate visit for the MS SMART drug trial

My penultimate visit for the MS SMART drug trial was always going to be a very short visit. Replace the old pills with a new set. These will then see me through for the final six months of the trial. I also give some blood, how I hate injections, I even have to shut my […]

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48 weeks so I am almost half way there

48 weeks so I am almost half way there

I started the MS–SMART trial on January 7th 2016 and I take the MS-SMART pill twice a day. Its now 48 weeks so I am almost half way there. This two year trial is looking at 3 different drugs to find out if there is some neuroprotection in any of them. 48 weeks so I […]

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Keeping the grey matter active

Keeping the grey matter active

I hope that this is a bit of a fun. How many times have you had to do something that’s looked easy? Then you realise that you need to think quite hard. Its called concentration or keeping the grey matter active :-0). Its called the Stroop effect Picture 1             […]

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MS-SMART and Anti-LINGO-1

MS-SMART and Anti-LINGO-1

At long last drugs are being tested to help slow down progression of SPMS. There are two trials in Phase 2 of the testing cycle. There is a good possibility something positive will be the result. The MS-SMART and Anti-LINGO-1 trials represent a real hope for us sufferers of SPMS. Each trial is evaluating how […]

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Strategy To Take The Pills

Strategy To Take The Pills

I will need a new strategy to take the pills after my second MS Smart visit. Very little happened except that the number of daily pills is now increased from 1 to 2 each day. They have to be taken as near to twelve hours apart as possible. It is the sort of thing that […]

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I started the MS Smart trial

I started the MS Smart trial

On 7th January 2016 I started the MS Smart trial. 3 drugs are being tested and the hope is that at least one of them will stop neurodegeneration. If you are not too sure what this means then call it shredding of the brain. People with Parkinson’s and Alzheimer’s suffer from the same problem. Three existing drugs […]

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MS SMART Trial

MS SMART Trial

I am excited because I have been asked to participate in the MS SMART trial. This is a trial for people with secondary progressive MS. 3 drugs have been selected. They have shown the potential to protect nerves from damage, which could ultimately stop or slow disability progression. For the trial you will be allocaed one of […]

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ASCEND, Whoops We Got It Wrong Again

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 […]

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Week 108

Week 108

As I said in my previous post for week 104 I am finishing the ASCEND trial. 2 October 2014 is my last visit to the clinical research center. Why did I stop I could continue and definitely receive Tysabri (natalizimubab) but the risk of my getting PML is too high for me to continue. This is […]

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Week 104

Week 104

Only a week after surgery on my shoulder I had an ASCEND trial. This will be my penultimate trip up to the Royal London hospital in Whitechapel for the trial I have now been on the trial for two years and I now have the option to continue taking the drug TYSABRI after the trial. […]

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Week 96

Week 96

Slowly but surely the weeks trickle by. Only another 12 weeks until the trial finally finishes. That’s another 3 visits to the Royal London Hospital. Even at this stage I don’t know if I’m receiving the real deal or a placebo. It is a random double blind trial. I suspect that I am receiving the […]

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Week 84

Week 84

Its now week 84 of the ASCEND trial, the weeks seems to have have rolled by ever so quickly. I can’t believe I’m nearly at the end. The real thing? Even after week 84 I have no idea whether I’m on a placebo or not. Looking back over the months of the trial my balance […]

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ASCEND trial, week 72

ASCEND trial, week 72

  Three quarters of the way there On Wednesday 22 Jan I had another infusion for the ASCEND trial, week 72, my 18th infusion of tysabri. Its a 96 week trial, so 24 weeks to go, 6 more infusions. Am I on a placebo?  Nobody knows, this is because it is a double blinded trial. […]

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48 weeks, half way there

48 weeks, half way there

I have been on the ASCEND trial for 48 weeks, half way through, so that’s another 12 more infusions.   Could Biogen Idec have  a treatment for secondary progressive multiple sclerosis (SPMS)? I have spent the last two days up at the Royal London hospital having tests.Yesterday (Monday) was taken up with assessing my EDSS […]

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Oh dear, not again

Oh dear, not again

Have you seen my reading glasses? Time for another infusion for the ASCEND trial. It was going to be a long day An early start meant catching a train at eightish and get back home at about sixish. As well as the infusion a batch of tests to include various timed walks,9 hole peg test. […]

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MRI Scan

MRI Scan

I expect that nearly all MSers will have had a Magnetic Resonance Imaging (MRI) scan. It can identify damaged myelin using an electro magbet. MRI is a technique used in radiology to visualize internal structures of the body in 3D. An MRI scanner is a large powerful magnet that constructs the X-Ray image of the […]

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Week 24

Week 24

I have been a bit lazy writing reports on the ASCEND trial, better later than never is all I can say. What stopped me? Actually it was finding something that was worth writing about. This takes a slightly different slant from the previous articles. Every four weeks I need to get out of bed at […]

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Third infusion

Third infusion

My third infusion was on 31 October, that was a few days ago. Double vision was troubling me when I went up the previous time, so I went to my optician, he told me to wear my reading glasses more often. Now I have no trouble with the double vision problem when doing work on […]

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Second infusion

Second infusion

Today I went the Royal London hospital and had my second infusion. There was not a lot to report since my first infusion. I have not noticed any difference in the last 4 weeks except that my double vision has got worse. This time there was just one test. I was shown a list of […]

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First Infusion 4th September

First Infusion 4th September

The infusions are to done monthly and the first one must be within 6 weeks of being accepted for the trial. I was accepted on 26th July. The first infusion It was set for Tuesday 4th September, cutting it a bit fine, but hey-ho I made it. I was told the first day would be […]

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Ascend Trial, the screening

Ascend Trial, the screening

MS is a progressive autoimmune disease and so far no cure has been found. It is devastating; you just gradually lose the ability to control part or parts of your body. Ascend trial, the screening My left leg has no strength. generally speaking from the wast down I’m a bit of a disaster. At least […]

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