Summary: High Dose Biotin for Progressive Forms of Multiple Sclerosis

[J-Bo]

I've posted this point before, but just in case anyone hasn't gotten the word, it is a really bad idea to take massive amounts of over-the-counter biotin. Not because the biotin is dangerous, but because large amounts of whatever they are using as a filler could be extremely risky. For example, if they are using something as benign-sounding as calcium for a filler, a dose that high could mess with your heart or even put you in a coma!

I understand the desire to take charge of your own destiny--goodness knows, I had the same impulse when I first heard the news about biotin, but please be careful.

[iainsherriff]

Hi.
First post so first off "HELLO"

I'm in the UK. My son has MS (presently on Tysabri). 4 years in form Capaxone and through 3 or 4 others nothing seems to make any difference to Matt.
Last visit his Consultant suggested coming off Tysabri for a few months to see what happens. While there he mentioned the MD1003 trials and said it could be worth Matt trying to get some as other patients have used it to good effect.
It is not available in UK and can not be prescribed officially BUT he did leave a screen open with enough details for us to see were to find the trial details !

Is anyone here from UK and has found a supplier ?
We want to give Biotin a go but despite the supplier to the French trial being a UK company we can't get it !

[Marco]

Hi.
Is anyone here from UK and has found a supplier ?

I've never seen an indication that a supplier exists within the UK.
I believe both "pure bulk" and "bulk supplements" ship across the pond.

[gwynnf]

Hi Y'all!
Just an update.
I started Biotin mid September, although pretty sporadic until early end of September early October due to surgery. I was taking 300 mg per day. I did realize I was going to have a period of worsening after the surgery, this was normal. I didn't plan on continued worsening.
I had a bladder stimulator place for bladder retention which worked wonderfully. Over the last 3 weeks though I developed worsening urge incontinence. This was puzzling because the stimulator also was to help this and had been.
I also started having problems with my already bad walking. My left leg is my worse leg and when I went for my pool therapy this week I couldn't even walk in the pool.
I spoke with my neuro and we decided I stop the Biotin and see what happened. The urge incontinence started improving within 24 hours and my next pool therapy 2 days later was greatly improved.
The Biotin isn't for everyone and I guess it's unfortunately not for me.
Good luck to those of you who are trying it.

[Soeren34]

Filler problem?

Hi Y'all!
Just an update.
I started Biotin mid September, although pretty sporadic until early end of September early October due to surgery. I was taking 300 mg per day. I did realize I was going to have a period of worsening after the surgery, this was normal. I didn't plan on continued worsening.
I had a bladder stimulator place for bladder retention which worked wonderfully. Over the last 3 weeks though I developed worsening urge incontinence. This was puzzling because the stimulator also was to help this and had been.
I also started having problems with my already bad walking. My left leg is my worse leg and when I went for my pool therapy this week I couldn't even walk in the pool.
I spoke with my neuro and we decided I stop the Biotin and see what happened. The urge incontinence started improving within 24 hours and my next pool therapy 2 days later was greatly improved.
The Biotin isn't for everyone and I guess it's unfortunately not for me.
Good luck to those of you who are trying it.

You do not write what kind of biotin you are taking but if you are taking OTC-biotin it could very well be problems with calcium as a filler. Calcium is neurotoxic in large doses and 30 times one tablet a day is a large dose of calcium. Therefore you must be carefull with OTC-biotin.

[Soeren34]

Wrong interpretation!

I think it remains to be seen how significant it is that (only) 12.6% of subjects showed improvement in disability. Chance alone -- like a coin flip -- would be 50/50. This is definitely a case where more studies are needed.

If only 1 in 8 people with progressive MS showed improvement, there's no indication right now that MD1003 will have much effect on RRMS, let alone knocking anything out of the park. Might be great if you're that 1 person in 8, not at all if you're one of the other 7.

You interprete this study wrong. It is right that 1 in 8 people show improvement ACCORDING TO THE GOALS OF THE STUDY! The important thing here is the significance. Because the study here is made by a small company with limited resources they have a relatively small number of patients in the study. Because of the small number of patients they need to set the goals relatively high to reach significance. That does not mean that a very few number of patients reach improvements, only that a small number of patient reach improvements according to the goals of the study. Normally patients with MS explore worsening with time but here you have improvement. Not so bad and better than many other studies! And biotin is only for progressive MS-patients and not for people with RRMS (not working and they have much other medication). For the time being there is no medication for progressive patients.

I know that some media interprete the study wrong in the same way as you do. Maybe they need some statistical basis learning!

[gtrseller]

Compounded 100mg Biotin capsules

Currently there are 2 suppliers of compounded 100mg pure Biotin capsules that do not require a written prescription. Availability by country varies.

Multiple Supplements Biotin Boost

Natural Creations


**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

[ru4cats]

If you have an interest in Biotin, I recommend the Facebook group, "Biotin for progressive MS". You need to ask to join, but you can read the experiences of those who have chosen to begin the regimine. After following it for many months, I have chosen to wait for more research. The side effects experienced by so many are none I'm ready to experience.

[sarah859]

Hi.
First post so first off "HELLO"

I'm in the UK. My son has MS (presently on Tysabri). 4 years in form Capaxone and through 3 or 4 others nothing seems to make any difference to Matt.
Last visit his Consultant suggested coming off Tysabri for a few months to see what happens. While there he mentioned the MD1003 trials and said it could be worth Matt trying to get some as other patients have used it to good effect.
It is not available in UK and can not be prescribed officially BUT he did leave a screen open with enough details for us to see were to find the trial details !

Is anyone here from UK and has found a supplier ?
We want to give Biotin a go but despite the supplier to the French trial being a UK company we can't get it !

Hi I brought it from multiplesupplements they ship worldwide good luck. its really helped me

**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

[sarah859]

I think it remains to be seen how significant it is that (only) 12.6% of subjects showed improvement in disability. Chance alone -- like a coin flip -- would be 50/50. This is definitely a case where more studies are needed.

If only 1 in 8 people with progressive MS showed improvement, there's no indication right now that MD1003 will have much effect on RRMS, let alone knocking anything out of the park. Might be great if you're that 1 person in 8, not at all if you're one of the other 7.

I take Biotin and I saw it as no risk. Every other drug I take does loads of harmful things. At least Biotin isn't going to give me PML or cancer! I'd glady be the 1 in 8, we hope like crazy we arn't going to be the 1 in 10,000 who gets PML but someone does.......

[gwynnf]

re filler problem

[QUOTE=Soeren34;1488364]You do not write what kind of biotin you are taking but if you are taking OTC-biotin it could very well be problems with calcium as a filler. Calcium is neurotoxic in large doses and 30 times one tablet a day is a large dose of calcium. Therefore you must be carefull with OTC-biotin.[/QUOT

I just saw your post....I was using 100% pure biotin not OTC. My walking has returned...almost...to where it was. Neuro says not a flare either.

[reasonable]

suprised

Apart from a thyroid scare from Biotin its having a positive impact. I found my MS was getting worse by the week while on Copax' then I found Gilenya hard to tolerate due to high liver readings (10x normal), however Biotin appears to be doing more than both. After reading the studies today I am honestly surprised there is not more on the discussion board about Biotin.

[AJMS1]

Biotin 100mg

I just got my Biotin 100mg from highdosebiotin.net. Taking 3 times daily - hope it helps !!

[Sheri]

Why should we not worry about the increase in MRI lesions?

I started then stopped biotin after seeing the info on increased lesions. Have any docs addressed that? Why is it not a concern? For those who have tried biotin, how'd it go?

[loopey]

Where is the info

I started then stopped biotin after seeing the info on increased lesions. Have any docs addressed that? Why is it not a concern? For those who have tried biotin, how'd it go?

I am really interested in Biotin but I haven't seen anything about increased lesions. Where did you see this?
Thank you!