Last week I had my baseline session for the trial at NHNN in London. This involved a lot of tests: fasting bloods (started at 7:30am), distance covered after 6 minutes' walking (downstairs in the basement), urine sample, neurological examination, questionnaires, muscle strength test (pushing thigh up) and eight 20-second balance board test (two each of eyes open and closed, feet together and apart). After this was all done they did the "randomisation" and put the order in with the pharmacy. Another 2 hours later and I was presented with a box of 15 100ml bottles of white liquid. It is "MIN-102 Oral suspension 15mg/ml or Placebo"...
I took the first dose of 10ml then and subsequently 10ml every day after breakfast. It's administered orally using a 10ml syringe like the ones you use for calpol for kids.
That's it. I go back in 4 weeks and again another 8 weeks after that. After that it's weeks 24, 48, 72 and 96.
I am the 5th person on the trial in London. They are doing one person a week.
Waiting to see if there are any signs of my ankles swelling...
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wilburlois15
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Good luck, I'm there on July 12th Could I ask what time did the tests finish? Erla (nurse) said don't book a train home before 4PM which is fine but I would just like an idea of times and factor in how long it will take to get back to King's Cross.
Good question. At about 11am someone came in to ask for my food order for lunch and then dinner. That made me wonder, but I was done and left not long after 2pm. The tests were finished by 11:30 or so but then it took about 2 hours to get the sign off from a consultant and then for the pharmacy to get the medicine. 4pm train from Kings Cross should be fine, even if it takes 30 minutes to get to the station!
Thanks so much for updating us! This is fascinating stuff. I didn't realize this was going to be an oral suspension - thought it would be a pill. Please keep us updated!
I spoke with Connor Murray at Kennedy Krieger yesterday, and he told me that they anticipate to begin the Minoryx trial in the United States in the late summer or early fall. No word yet on whether I'll be approved to participate, but he went over the restrictions with me, and I should be good. My testing site would be Stanford, which is a pretty short plane ride from Seattle. Has anyone else in the US gotten any updates?
There were several restrictions, far more than I can remember, unfortunately. The big ones were any other current ALD/AMN clinical trials (high dose biotin, etc.), Lorenzo's oil, recreational cannabis use (medical is okay), signs of cerebral ALD, and an inability to walk with assistance. You should reach out to Mr. Murray at KKI if interested. He was quite helpful.
There were two physical tests in the screening. The first was the ability to walk for 130 metres (400 feet?) and the second was to balance with legs apart and eyes closed for 20 seconds. The second test was tough for me and if I were to do it again, I'd practice beforehand. These are important because the tests they do for the trial involve distance walked in 6 minutes (assistance allowed) and balancing on a special platform with eyes open and closed and legs together and apart.
not much. My ankles swell a little during the day, which could be water retention which is a known side effect of the drug. Or it could be a result of the recent hot weather. Other than that, not a lot - it is early days I suppose.
One thing I have noticed is that I now feel pain when I remove a tea bag from a cup of hot water with my fingers. That would be a sign of neurological improvement as according to the doctor it is normal to feel pain...
Just been to the 4 week visit. Very short this time - just ECG, fasting bloods and a health check up. They want the used bottles and I had to take the drug there rather than at home. All in, I was finished by 10am after arriving at 8am. Next visit is in another 8 weeks' time.
I was at the neurological hospital in London for the 1st time on Thursday 12th Aug. As mentioned I did the 20 second balance test (I did practice when the nurse was out of the room) and did well. My main issue was my 2 eGFR kidney function blood results requested prior to my visit were both poor.
On the morning of my visit I drunk 3 glasses of orange juice and 3 glasses of water and more water at the hospital. This is much more than usual for me. A further eGFR test was taken and I got 75 which is fine as anything under 60 is low (I was only at 55 previously due to dehydration).
I think the MRI scan with dye is the reason you need decent kidney function. I had a scan without and a scan with dye. I get the results in 2 weeks.
I also had to walk 500 metres up and down the corridor. Managed that in just over 7 minutes. I was also asked various questions and did tests with Dr Murphy.
My next visit is on August 9th. As mentioned I need to fast from midnight then have more blood tests. I also have to walk for 6 minutes which is less than I've already done.
All being well I should receive medication on my next visit. So far so good.
wow 500 metres! That's more than I had to do: think it was 130m for me (but there was some uncertainty about this) and even then I had to do several laps of the Nuffield Ward.
Good luck with MRI result and the baseline visit. The breakfast tastes so good after fasting.
Had my baseline today. All good and fairly straightforward (if not for nurse Erla who seemed to struggle carting around and assembling the various bits of kit for the tests).
Officially I’m now subject number 7 on the trail - first dose of the medicine/placebo today, the first of daily doses for 4 years.
4 years, 2 years surely? I now have my medication too.
A few tips. Get and keep all receipts. They will pay for taxis (we need 4 per trip) and evening meals as well as for train travel and accommodation. They give you a card then add expenses to it.
Thursday was quite a long day, 7.30 - 3 PM. Fasting bloods, 6 minute walking test, urine sample, tests with Dr Lachman, balance tests and a few questionnaires.
I'm back again in 4 weeks, then again in 8 weeks and then January. I then get a 6 month break.
I'll update in a week or 2 whether or not I notice any changes.
They wouldn't see me in London, they reckon they don't have the capacity? However a doc from Amsterdam rang me and he's happy for me to go there! I went last week and I've been accepted! A bit of a trek from South Wales but probably easier than getting into London? I've got a appointment in 2 weeks to start to medication!
Congratulations! Only now do I realise that I was lucky to get on when I did, mostly as a function of having my annual consultation with Dr Murphy just as they got started. There are only 2 people running the trial in London (Erla and Ming) and they can only process one new person a week so it's slow going with all the visits at the start (screening+baseline+4week).
Hi, can you tell me how big the backpack is that they give with the medication? I'm going back next week and they said the box is quite big but they'll give me a backpack?
We just rejigged a few lighter things out of our case to fit the box of 15 bottles in and put the items into the rather large North Face back pack. You have to return all 15 bottles each time you travel so you'll need to make space.
I received a call from Amsterdam a couple of weeks ago but I was already in progress in London. I might have enjoyed a trip overseas
Hi Steve, nothing of note re: improvements / side effects but I'm only 11 days in on 10ml. I'm back to London in 10 days. Obviously somebody has to be on the placebo...
the box is too big to fit in the back pack! Or at least it won't fit easily. I took a piece of wheeled carry-on baggage and the box of bottles fit in there easily. I put the back pack in there too!
Does anyone feel sick and dizzy? I've been taking the medication for 5 days now and it lasts a couple of hours after taking it? It could be my brain over thinking?
I haven't told them but I looked at the notes and it said some experienced Nausia and head aches! I haven't felt any for a couple of days now! I'm on day 8
I messaged the nurse coordinator and she said Nausea and dizziness are side effects we have previously heard from other patients. She said to note it in the diary!
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Could I ask what time did the tests finish? Erla (nurse) said don't book a train home before 4PM which is fine but I would just like an idea of times and factor in how long it will take to get back to King's Cross. 
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