krisp 16/03/15
Last reply 1 year ago
Progressive ms

Sorry for this not sure if it’s been mentioned before but for you guys with progressive Ms I read about a drug called MD1003 which appears to be high dose vitamin h, looks good so far, might give some here a lift

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stumbler
3 years ago

@krisp , this is both exciting and encouraging for us with progressive variants.

Phase III trials are both completed or planned, so we need to wait for the results to be presented and evaluated by the regulatory bodies.

More details here:-

http://multiplesclerosisnewstoday.com/2015/03/13/two-progressive-ms-phase-iii-trials-to-be-presented-at-aan-annual-meeting/


krisp
3 years ago

@stumbler
Hi yes it does look promising, admittedly I’m only new to all his research etc and I have become aware there’s been a few ‘cure’ claims, but surely a phase III combined with the results from the phase II where there was a 90% record of some level of improvement must be good


stumbler
3 years ago

It’s definitely good, @krisp . But, we’ve learnt to be patient – the wheels of bureaucracy move very slowly………


tabbycat
3 years ago

Wow – 90percent (of a small sample I know) showed improvement! Biotin is fantastic for hair and nails and is the MSESSENTIAL tablets,but in no where near the strength suggested in the trial. I am off to Germany at the weekend, where everyone takes biotin and I am buying up all the stocks I can find!


krisp
3 years ago

@tabbycat
I think it was at a level that we in the uk would need to take around 300 tablets a day of the standard vitamin store variety.
But fingers crossed for everyone with progressive types that they get this treatment out there asap. The fact that two phase III trials are out there looks good, also sadly the fact it’s been patented is ironically a good thing, meaning the incentive is there to get this to market for them to make money


tabbycat
3 years ago

Well you can’t over dose on biotin, so I am going to get as much as I can, if only to satisfy that human need to feel you are fighting back and not just waiting and hoping for the white knight to arrive. Fingers crossed for this and stem cells and all the other pharma miracles that are going to make this wretched condition as treatable as Tb and so many forms of previously fatal cancers. On wards and upwards!


krisp
3 years ago

@tabbycat

See that’s the attitude I need, currently I’m undiagnosed and in the feel sorry for myself stage thinking of all the worse case scenarios
I am determined I’ll get the right attitude soon

But yes your right there looks to be a lot of new drugs getting closer and closer to halting it


tabbycat
3 years ago

I am absolutely sure it will be beaten in my life time and I am in my early 50s! Research is coming on leaps and bounds and most of what you read on most Ms web sites on line is realty out of date.
I hope your diagnosis is negative for MS , but if not there is still plenty of hope, what ever stage you are at. Stay as positive as you can, cry only in private and spit in the face of adversity my friend!


krisp
3 years ago

@tabbycat

Thankyou for that its genuinely really appreciated, I know I need to be stronger and having people with a positive attitude like you really does help

It’s a potential exciting development and i really hope it materialises! As @stumbler said, the powers that be can take their time!! We live in hope, fingers crossed.


krisp
3 years ago

Yeah I agree on all the powers that be
I’ve seen a number of drugs that look promising, gnbac1, HAART therapy etc but this one is already in phase III with results to be posted in April I believe? So you’d think this one is close
Plus with a lot of the RRMS drugs coming off patent you’d think that the pharma companies will concentrate on the progressive types to ‘help’ profit


tracyd
3 years ago

Costco sell the 5000ug biotin for £10

It reduces the number from 300 a day to 18 to match the dose that this trial is using and brings the cost down below £1 a day even to take 18 of them.

I will be asking my father in law if he wants me to bring him a couple of months trial amount up to halifax


tracyd
3 years ago

Sorry meant to say 250 x 5000ug biotin 🙂


krisp
3 years ago

@tracyd I ordered the 1000ug tablets from online and have been slowly upping the dose, I’m not diagnosed yet but it’s an anti ageing vitamin so either way I’ll look young lol
I think next month they’re releasing the findings, but I’ve seen a report that was done years ago using this that suggested a use as a treatment.


krisp
3 years ago

Actually @tracyd it was 10,000mcg


tracyd
3 years ago

@krisp … Blimey us it the size of a golf ball? 🙂


krisp
3 years ago

@tracyd it’s not small that’s for sure
But they’re only 10mg so I’m taking 2/2/2 so 6 in a day I might get up to 10 and see what the results of the trial are then up IT if needed?

I know it’s water soluble but and there’s been no claims of any toxicity previously but then 30 tablets a day would be a heck of alot

I think it takes around 2 months or so to notice any affect too?


Anonymous
3 years ago

I looked into it. Here is the quote from Barts regarding dosage:

Biotin for progressive MS

“So there you have it super Biotin MD1003 which is a highly-concentrated pharmaceutical-grade biotin (vitamin H). The dosage is 300 mg/day corresponding to 10,000 times the recommended daily intake of biotin. As such, MD1003 is no longer a food supplement: because of potential toxicity and new therapeutic properties at this dosage, it is an active pharmaceutical ingredient.”

http://multiple-sclerosis-research.blogspot.com/2015/03/biotin-for-progressive-ms.html


Anonymous
3 years ago

Most interesting excerpts from Barts:
“Among others, biotin activates acetylCoA carboxylase, a potentially rate-limiting enzyme in myelin synthesis.

RESULTS:In four patients with prominent visual impairment related to optic nerve injury, visual acuity improved significantly. Visual evoked potentials in two patients exhibited progressive reappearance of P100 waves, with normalization of latencies in one case. Proton magnetic resonance spectroscopy (H-MRS) in one case showed a progressive normalization of the Choline/Creatine ratio. One patient with left homonymous hemianopia kept on improving from 2 to 16 months following treatment׳s onset. Sixteen patients out of 18 (89%) with prominent spinal cord involvement were considered as improved as confirmed by blinded review of videotaped clinical examination in 9 cases. In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.
****************************************************************
CONCLUSIONS:These preliminary data suggest that high doses of biotin might have an impact on disability and progression in progressive MS. Two double-blind placebo-controlled trials are on going.
*****************************************************************
Results will be reported at the AAN on the April 24th. So if it works then the truth will be out in 1 month. The second trial finishes end of 2015.”


Anonymous
3 years ago

So @krisp was right! It is 10,000 mcg or 10 mg which means 30 tablets a day and results appeared in 89% patients from 2 to 8 months after start of treatment. The report appears to be deliberately vague. 30 water soluble biotin tablets sounds better than a few tecfidera capsules! I found Natrol Biotin 600 tablets 10,000 mcg for $87.10 US at amazon.com for instance. That is good for 20 days. If it doesn’t work, maybe we will discover a cure for baldness. 🙂


krisp
3 years ago

Results are out 24th April so we’ll see then
Trying to find out what else biotin does but can only find hair growth, skin, anti ageing and possibly a contributor in depression


krisp
3 years ago

It also helps lower cholesterol which is interesting when you look at the statin trial?


krisp
3 years ago

This was from a study in 1999 of epileptics and Msers

eduction of biotin levels in patients with multiple sclerosis could be attributed to intestinal malabsorption caused by the underlying disease or a biotin-binding immunoglobulin which may be involved in multiple sclerosis pathogenesis.

They found a significantly lower level lf biotin in patients


krisp
3 years ago

If you check the actual trial details from the phase 2 they used dosages from 100mg-300mg
They are only using 300mg now but at least they had some improvement previously using 100mg too? From 2-36months


graham100
3 years ago

Yes and when it’s all been approved we still won’t be able to get it. Unless your rich or famous. Ha


krisp
3 years ago

Surely we will have It here pretty soon? either that or we’ll all be full of biotin supplements


krisp
3 years ago

I suppose too the best thing to come out of it if it successful, is it will give all the other pharmas a huge kick up the backside as none of them will want Med day monopolising the market, could be the kick in the arse they all need!!!!!!!!!!


krisp
3 years ago

Here’s a bit more info for you all

•Biotin activates enzymes involved in energy production and myelin synthesis.
•91.3% of SPMS or PPMS patients improved clinically with high doses of biotin.
•Improvement concerned chronic optic neuropathy, homonymous hemianopia or myelopathy.
•In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.
•Two multi-centric double-blind placebo-controlled trials are currently underway.


krisp
3 years ago

Remember this is improvement not slowing or delaying


deejay
1 year ago

Has there been any update on these trials on this please?


stumbler
1 year ago

@deejay , all these things take an inordinate amount of time, unfortunately. There’s some details here :-

https://www.mstrust.org.uk/a-z/md1003

Some MSers are anticipating favourable results for this drug and are already acquiring pharmaceutical grade Biotin, measuring it out and taking it.


tessa
1 year ago

Prof G and the Barts team are very cautious about expectations on this subject.
#AAN2015#MSBlog#MSResearch
However we live in hope. I am seeing him in November so will ask the questions !
Tessa

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