Biotin Trial in SPMS and PPMS

[Veronica]

I've been reading with great interest all this info on Biotin for months now. I had my six month visit with my neurologist earlier this month, and wanted to ask him about the Ocrelizumab....as I was intrigued by the reported improvements in walking ( my nemesis..). He said that he was wary of switching my DMDs when they are working so well ( I am on Avonex and Cellcept), but that he would suggest I think about the Biotin! So delighted that HE suggested it.....he said to give it a good three months....gave me a Rx to have my thyroid level checked before I start so I have the baseline. I saw my PT right after this appointment, and told him. Herb told me that he has a few patients who have been on it for awhile now, and they report subtle improvements.... Heck, I'll take that..As he said, so much of MS is subtle things that (pun intended) trip us up. And thanks undisclosED for the facebook hook up. Just gives some good info on purchasing and helpful hints. I'll let you all know how it goes.....

[teena marie]

Hi Veronica,

Lucky you? What dose were you prescribed and is it easy to obtain?

Teena Marie

[Veronica]

Hi Teena Marie: Yeah, we will see if I am lucky or not! My dr. gave me a Rx for the standard 100 mg three times daily, I ordered it in bulk from Bulk Supplements.com as per info I got from the Biotin facebook page and did not need the Rx. I understand that one can use the Rx to obtain the biotin in capsules from a compounding pharmacy, but that through the pharmacy it is also a much more expensive way to obtain the biotin. I bought a scale and will be getting a smidgen spoon so I can better scoop it out onto the scale. Actually it is rather funny....here I am ordering white powder, a scale and a spoon through the mail, and it is legal.... Feel like I should put on Jefferson Airplane's White Rabbit and lower the shades when I am preparing my dose!
All kidding aside, it is ok for now to do it this way, but I think I will contact a compounding pharmacy locally to ask them to put this in capsules for me. I have only been taking it since yesterday afternoon, and worked from home today, so tomorrow I will have to figure out how to carry my mid dose. Capsules would be much easier for traveling too.
Delivery was quick....within 5 days I think. Also, I started with the dosage as prescribed, and am not titrating it up. Since I got it yesterday afternoon, I just got in two doses of 100mg each, but today I am doing the full 3/100 mg doses.

Now I have a question for you. Something you posted on another thread. How do you use the magnesium oil?

[teena marie]

Hi Veronica,

It's a spray that I spritz on my hip and anywhere else. The skin absorbs it quickly.

Teena Marie

[teena marie]

Hi Veronica,

I'm so interested in biotin, having just spoken to someone taking it with good results.

How are you doing?

Teena Marie

[Veronica]

Hi Teena Marie: Well, I haven't completed my first week yet,( that will be Monday evening...) but no ill effects at all... I've gotten used to the dosing with the powder but will be getting capsules and the filler Geegaw ( they call it a machine, but it is really just a holder for the bottom of the capsules...) I need it for my afternoon dose if I am not able to get to a private place to weigh out the biotin... my work has me often at different locations during a given day with limited privacy.
I haven't seen/ felt any difference yet that I can atribute to the biotin...but my doc said to give it a month, so I still have just about three weeks to go. Good timing with my next PT session as Herb will be able to give me a realistic assessment. Wishful thinking can be very powerful, and maybe abit misleading! All my regular stretches and exercises are staying the same so I can really judge if I feel a difference. Got my fingers crossed. I'll keep reporting....

[AMFADVENTURES]

TM, V you're right, biotin looks promising. Just back from my yearly pilgrimage to the state of the union speeches on MS in my area where biotin got a favorable moment or two, although without significant confirmation (but why would there be, it's cheap). Still, I'm interested in trying it. I'll talk to my neuro next time I get a chance but may add it to a short list of supplements, until then anyway. Apparently there's no downside. V, thanks for the web site, but can't help but wonder if the product is genuine?

L

[teena marie]

The person to whom I spoke started feeling improvements at 2 weeks. He is also using a scale and measuring spoon.

How do you find the facebook group? I just tried joining but seems I am restricted for 12 hours.

I'm trying to contact my neuro but I suspect he won't go for it since he doesn't like to prescribe off label.

[Veronica]

Your concerns, Larry about the purity/genuine quality of the biotin is something I also thought alot about...Just know that I can't afford the compounding pharmacy route, even if I get them to lower the price, so I figured I would take the chance. I am trying to find a way to verify the purity of what I have.....

Teena Marie...nice to hear that someone is seeing improvements in such a short period of time, and with the bulk stuff... I don't know what the issue is with you joining the facebook group, I hit "Join" and shortly after I got an acceptance. I saw that someone had posted that a friend of theirs had a problem, so they gave the full name and asked the administrator to add them and it was done. If you want, private message me here with your facebook info, and I will try to get word to them to accept you....

[teena marie]

All resolved.

Many thanks.

Teena Marie

[AMFADVENTURES]

V, TM, I found this, the U. S. Pharmacopeial Convention does verify ingredients and strength of supplements that suscribe to their service. Although I imagine labels can be falsified, it might be worth looking for. This is the Web address, information and seal of approval to look for.
http://www.usp.org/usp-verification-...ry-supplements

[teena marie]

Thanks for this, Larry. I'm still trying to contact my neurologist. There is a compounding pharmacy here in Montreal I will hopefully use with a prescription.

[Veronica]

Yes, thanks for this Larry. My biotin powder has a "Manufactured to GMP Standards" mark on it, but I can't figure out if this is for purity of product. Gonna call the compounding pharmacy near my and price out the caps, but may also pick his brain about how to check on purity. In the meantime, I am just continuing the 100 mg 3x daily.....

[Veronica]

Ok, so it has been one month today since I started the Biotin. It's been easy to dose....decided against the compounding pharmacy due to cost.

I VERY CAUTIOUSLY am reporting some improvements here. It is, as I was told it would be, very subtle, but I think it is real and not wishful thinking.
While I do not have the type of MS fatigue that others have, I do end up with motor fatigue when I "use up" my leg, and then overuse my stronger muscles and body parts to get me thru the day which result in my being very physically fatigued at the end of the day. I have had much fewer days of this, and have not reduced my daytime activity. I see it in side stepping in my kitchen making dinner.My hip doesn't collapse/drop as it always did......I stepped up on my tredmill leading with my weaker leg the other day without even thinking that I usually can't do that.

Walking in general just seems more comfortable, more fluid, with much more heal strikes first and fewer plopping of the right foot ( if you know what I mean....)

Now, my balance tests that I do most evenings do not show any difference.....and my distance in walking is no different....just more comfortable until the leg fatigues out. I shouldn't say "Just" because it really has me happy. Stairs are still difficult, but on Saturday evening I was at a concert at a small landmark theater (aka OLD). The bathrooms were down a steep flight of stairs, and then our seats were in the balcony....two steep flights up. My form was still stinky in doing all these stairs, but it did not "use up" all my motor strength, and I easily was able to walk ( and talk) the block back to the car after the show. A nice feeling and not one that I have had in quite a long time. In general I feel I have more sustained energy.

I see my PT on Friday and I know that he will be able to give me an unbiased assessment. I'll let you all know!

[teena marie]

Wow, sounds impressive, encouraging. My neurologist just gave me a script. He wants to go slowly so it will take a while before I'm at full dose. Started today at 20mg twice daily. I'm keeping my expectations in check since it will be 3 months before I'm at 300mg daily.

Continue to keep us posted.

Teena Marie