Last reply 3 weeks ago
Biotin for progressive forms of MS

MedDay Pharmaceuticals is developing high-dose pharmaceutical biotin for treatment of progressive forms of MS. Currently in phase III development, there is an ongoing clinical trial in Europe and the US named SPI2.

Some articles I’ve read argue that this treatment can stop progression and has induced a mild reversion of disability in a few patients. Given that biotin has no anti inflammatory effect, is this an add on treatment to DMTs approved or used in PPMS? (ocrelizumab, rituximab, etc)

Can we expect to have more info on this treatment after ECTRIMS 2018 this coming October?

Opinions? More Information?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


californiadreamin
1 month ago

@fxms My wife is taking just a little bit of biotin. If you want you can actually order high dose biotin at least here in the US from any compounding pharmacy. However, I would urge caution before taking large doses in combinations with other DMTs in particular because its effect is not fully understood and its surely does not stop MS nor its progression only that it might help. Here is one article worth glancing at, the study is small and saying its trippled is making it seem more severe then it really is.

https://www.uspharmacist.com/article/highdose-biotin-triples-relapse-rate-in-primaryprogressive-ms


stumbler
1 month ago

Pharmaceutical grade Biotin is available from US suppliers, which needs to be measured out with Jeweller’s scales.

But, that report above from @californiadreamin does question the use of high does Biotion and the ongoing development of the MD1003 therapy……….


californiadreamin
1 month ago

This is the poster session from ECTRIMS that will have more details on Oct 9 on this:

EP1444 Comorbidities and safety of use of MD1003 in a cohort of patients with progressive multiple sclerosis


fxms
1 month ago

Thanks @stumbler and @californiadreamin !!

I’m hopeful we’ll have news regarding MD1003 post-ECTRIMS. 🙂


sevenup
3 weeks ago

Confused by the results of that study it says only one person had an increase of EDSS , 17 didn’t change and 10 got less ( improved) which sounds like the high dose biotin is helping ???


watsoncraig
3 weeks ago

I ordered High dose Biotin Capsules and took them for 4 months with NO decrease in the progression of my PPMS (just a decrease in the bank balance)


stumbler
3 weeks ago

@watsoncraig , I doubt if you ordered the capsules with the same dose as used in the MD1003 trials.

Even on the highest capacity available commercially (10,000mcg), you’d end up downing thirty capsules a day to match the trial dosage.


watsoncraig
3 weeks ago

stumbler
3 weeks ago

@watsoncraig , wow, I stand corrected.

I thought it was only a matter of time before an “entrepreneur” tried to make a profit out of MS………..


watsoncraig
3 weeks ago

@stumbler

Well Big Pharma do it….


fxms
3 weeks ago

I’ve been taking these for less than a week. Have experienced no adverse event so far… Comments are quite good on Amazon. Let’s see if it helps…

https://www.amazon.com/3-Pack-Potency-Biotin-D-Biotin-000mcg/dp/B01MDRXQUY/ref=pd_ybh_a_1?_encoding=UTF8&refRID=4MMJB8ZZR68AAHJ63RPS&th=1


potter
3 weeks ago

I have been taking a 100 mg capsules twice a day for several years. I don’t know if it is helping but I can use all of the help I can get with my hair and skin. Potter


arknat
3 weeks ago

Encouraging comments in amazon. Makes me want to try it … Hopefully it has benefits for RRMS as well. Spasticity and foot drop during my walks are plaguing me and any improvement to those symptoms are welcome. Thanks for the link, @fxms.


arknat
3 weeks ago

Happened to stumble upon this when researching Biotin:

https://www.uspharmacist.com/article/highdose-biotin-triples-relapse-rate-in-primaryprogressive-ms

Looks like I would need to ask my neuro before I start using it. Does someone know about this ?


fxms
3 weeks ago

@arknat Yes! I saw the article a while ago. I’m afraid nobody knows for sure the risk/benefit profile of biotin for progressive forms of MS until more conclusive studies are conducted. Also, it would be interesting to know how biotin works together with DMTs approved or used in PPMS and SPMS.

If I were you, I would ask my neuro for advice. I feel like medicine is sometimes a bit of an art. He/she will be able to evaluate your question in the context of your unique characteristics as a patient.

I decided to try biotin for a few months and see what happens.


dominics
3 weeks ago

A worthwhile read: https://www.mstrust.org.uk/research/research-updates/update161206-MD1003-for-prog-MS

The key points are:

“The results suggest that high-dose biotin may cause a reversal of MS-related disability in a subset of people with progressive MS. However, the numbers of people involved in the study are relatively low, making it difficult to draw firm conclusions. The data are complex and will require more detailed analysis to draw further conclusions or identify those most likely to benefit.”

I’m trial speak: A big maybe.


dominics
3 weeks ago

In trial speak…
Fat thumbs. Apols.


fxms
3 weeks ago

@dominics exactly, its a big maybe.

I will be following this clinical trial next year for more info:

ClinicalTrials.gov Identifier: NCT02936037

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.