I wanted to follow up regarding the Pharmaceutical Grade/Compounded Biotin question. I discussed it with my neuro immunologist today at my appointment. See below for a link with information about the study.
My Dr. said that the study was done on patients with progessive forms of MS, and that the results were promising. Because there are so many DMT's for R&RMS, much of the reserarch now is being conducted for the more progressive forms of the disease. However, they are optimistic that it could help those with R&RMS.
Attached is a photo of the Biotin I will be taking. It is approximately $50/month. The dose is 100 mg three times per day. My doctor said that It is a typle of B vitamin which won't suppress the immune system and that It is non-toxic with no known side effects. See healthline link for more details.
*NOTE: This is a compounded pharmaceutical formula, not one you can purchase over the counter.
**Check with your doctor to see what they say. I just ordered it so I cannot report any results yet, but I will in down the road . At this point, I’m just sharing information.
I was trying to figure out why the Phase 3 trial in the 2015 article you referenced wasn't enough to support a marketing application for this high-dose Biotin. It looks like the sample size was small (144) and was limited to one geographical location (France). The study was also on Spinal Progressive MS, a subset of PMS.
One excerpt from the article that explains the interest in Biotin is: "According to the study, one hypothesis to explain the cause of progressive MS is a phenomenon called “virtual hypoxia.” The phenomenon is caused by a mismatch between increased energy demand by the damaged nerves, and decreased energy production because of damage to the mitochondria. The mitochondria’s job is to manufacture fuel for the nerve cells to function properly. Biotin helps to make this happen."
I checked for ongoing trials of Biotin and there is one Phase 3 trial that is actively recruiting patients with PPMS or SPMS in the US, Canada, and the EU. They are aiming to recruit 600 participants globally. (The study began in 2016 and it is unclear how many patients are already enrolled.) The study title is: "Effect of MD1003 in Progressive Multiple Sclerosis." It can be viewed at clinical trials.gov by doing a search for "MD1003" and "MS." (The ClinicalTrials.gov identifier is NCT02936037.)
If you're interested in participating, scroll toward the bottom where it says "Contacts and Locations" and click on "Show 67 Study Locations" to see if there is a location near you.
Patients won't know if they are on Biotin or a placebo for approx. 15 + months, so that is a downside to consider. (I don't see where it is a 1:1 ratio or a 2:1 ratio, so I'm unsure what the odds are of getting Biotin versus placebo.) After this time (~ 15 mos.), all participants will be on Biotin for the next 12 months. Study drug is provided.
There is also a dedicated study website: spi2study.com but I recommend checking out the inclusion/exclusion criteria and other study details first on clintrials.gov, before going to the study website.
Of course, if you can afford it, it might be better to just pay $50 a month to get the high-dose Biotin for yourself, upfront, as Suzy has.
Well, I'm glad that your EDSS is on the lower end of the scale!!
Interesting that they chose progressive forms of MS for the study. I guess they needed to to show improvement. It seems likely a risky design though since many are on a downward trajectory already. Harder to show improvement, I would think.
Anyway, thanks for your input about drug interactions, thyroid labs, etc.
It'll be interesting to see how the data turns out. Won't be getting a read out for at least another year and a half, probably more like 2 years +. Too bad there isn't a standardized test for energy levels, huh?
Good point about measuring improvement in a disease state that naturally progresses. I guess they'll measure against a control group but given the individual nature of ms, the effect size needed would have to be enormous?
Standardized energy measures...VO2 max? An accelerometer?
I swear I use more energy to do the same amount of work now that I have MS and lots of rest breaks b/w expenditure 😴
Bummed out! I would so love to participate in the trial, I just turned 69 in May. But if you take into consideration I was a very athletic person right up to win MS slammed into me, I'm still healthier than most people before age 65. So I don't qualify because of the age factor 😔 ☹️🙃 !!!
At least we all know the dose they're studying and it appears to be available through compounding pharmacies with a script, as Suzy explained. (One has to be cautious with compounding pharmacies, but that's another story.)
CalfeeChick and Nom_De_Plume -- Just to clarify, you do not need a script. You can just go to the website and order it directly. But, of course, check with your doctor first I agree, be careful about compounding pharmacies. The photo I provided of the pharmacy from whilch I ordered was provided by a healthcare person at Stanford Neuroscience Center where I receive care.
People I've talked with that have tried had no appreciable side effects but after a few yrs noticed no difference
There's a study, I believe outof UCSF (San Francisco) enrolling RRMS/SPMS but the EDSS (more disability) required was too high for me to enroll (you could participate remotely).
Do be careful. Biotin can interact with some meds and will alter thyroid lab results (not your thyroid, just the lab)
Great Job describing the Biotin issue. For others seeing this, the 100mg is 100,000mcg, so what some of you are seeing on the shelves are in mcg's, very small doses. Same brand I switched to after the first at a lower cost than the first. No, I have not noticed a change, but changes come slowly with nutrition. But, they do!!! Hope this helps.
MarkUpnorth I echo your important point about the dosage. The bottles of Biotin at GNC and other retail places have a dosage that is a fraction of the Biotin being used in the study.
suzy20 I have been taking high dose Biotin for about a year (I have SPMS) and after it kicked in, which took a few weeks I saw a definite benefit in strength, endurance and increased walking distance. After a couple of months the benefit seemed to diminish; possibly I've developed a tolerance or this might be because of an increase in disease activity which has occurred. (Since I don't have relapsing MS I don't call this a relapse, I call it a drop off. part of the pattern of the disease for me)
In any case I recommend high dose Biotin and I recently found the same product on Amazon that I had been purchasing from a compounding pharmacy for considerably more $. See link. But it seems I am not the only one to make this discovery, they are selling out fast -
I used to give my horse biotin to increase the growth of good hard hooves. Has anyone who is using this product noticed stronger hair and/or fingernails? I am definitely going to ask my dr. about it.
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Primary Progressive MS
