Does anyone use Biotin?

[Zuzus11z]

I've been doing 10000mcg for a few weeks now. Have not really noticed anything yet. Saw WK's post too and I think the calcium warning a valid one. I've been toldby another source that Skip's Pharmacy has started to compound high dose biotin as well...specifically due to this study.

Let's keep our fingers crossed.

[J-Bo]

Feeling better...

I still see a lot of comments asking about "feeling better" on Biotin. Feeling better is not the primary goal of any of our disease modifying therapies. All of our medications, including Biotin, are designed to change the natural history of the disease (slow progression). So while Biotin may improve your hair, nails and give you an energy boost your daily symptoms may never change.

Marco, the reason people are talking about feeling better is because in the Phase I trial, 91% of the subjects showed an improvement in their EDSS. That was a very small trial, like 25 or so people, I think. The Phase III trial with a much larger subject group had significantly less impressive results with 12% showing improvement. But still, as I'm sure you know, any treatment for any kind of MS that seems to reverse existing damage, even for just a small percentage of people is really pretty astounding.

And just now, I found this article http://www.healthline.com/health-new...ve-ms-052215#2, which talks more about the theory behind it all in a way that I haven't seen before. But be advised that in it, they sort of confused the Phase I results with the Phase III results. Still interesting, though.

[S 31]

Biotin -8

@Zuzus11z

I actually just ordered some...8 mg per capsule and I THINK it said take up to 2x per day. So that would be 8000 mcg up to 16, 000 mcg ? Just Google Biotin-8 and it will come up...it's a site for "pure" supplements. (I'd say the name but didn't think I would be allowed to) I will post how it's doing for me after a while.

Serena

[lori]

I talked to my neuro, then Skip's compounding pharmacy (getting 4-ap from them for years). pharmacist said they've had many calls, but rx grade isn't cheap. 100mgx3 would cost @350.00/month. i decided to try 30mgx3. haven't started yet, but will let you know.
you need dr. rx.
lori

[pshrink]

Seeing effects already

I am now in the third week of Biotin.
I got 100% (i.e. pure) from PureBulk in Oregon. Ordered 2 x 25 gram sachets, which only took about 5 days door-to-door to UK.
Put 0.3 grams into a 500 ml bottle of water and sip all day.
Now I had lost virtually all left leg function, and got drop foot, and for nearly a year have only been able to move the 2nd and 3rd toes on that foot. Yesterday and today I am now able to wriggle four toes.
My wife suggested this was imagination and I said "Watch". She said "Wow, you're right!"
Obviously this is not going to do anything for my EDSS Score (6.5) but it is encouraging.

What remains to be seen is the knock-on effect. I can be a little bit more active so I can do a little bit more exercise, so my muscle tone improves so I can do a bit more exercise, etc, etc, ...
PureBulk are not the cheapest, but they do have it in stock (and I am cautious about people who quote very cheap prices and just "happen" to be out of stock) and it works out at something over $1 per day.
I am pleased that somebody convinced me to give it a try
G

[JerryD]

Thanks for the responses, everyone. Your participation is very helpful. I spoke to my neurologist, today, and he wasn't very positive about this biotin treatment. But I don't care what he says about this 'biotin' treatment option. I'll bet if this treatment was a Biogen product offering, he would be pushing it on me, right away. I'll reserve judgement until I hear and read more positive results from many more MSers.

[Marco]

Thanks for the responses, everyone. Your participation is very helpful. I spoke to my neurologist, today, and he wasn't very positive about this biotin treatment. But I don't care what he says about this 'biotin' treatment option. I'll bet if this treatment was a Biogen product offering, he would be pushing it on me, right away. I'll reserve judgement until I hear and read more positive results from many more MSers.

Jerry,
I also had a neurologist appointment today too. We had a disagreement on an issue. I said, "You are healthy and I am the one with MS. If you had MS you might reconsider your current opinion on the topic."

Of ALL of our therapies, supplementing Biotin is probably one of the safest. Maybe it only helps 10-20% of the patients, but that's 10-20% more than are helped today. I understand "do not harm," but some doctors also need to understand "try to help." Considering there is no known cause and no cure they really need to work on their flexibility towards Complimentary and Alternative medicine and such. Especially for PPMS patients where treatment options are next to nothing. I'm sorry your neurologist was a wet blanket. Hopefully, he'll ask and receive a bit more compassion for Christmas!

[Frederick1]

I am now in the third week of Biotin.
I got 100% (i.e. pure) from PureBulk in Oregon. Ordered 2 x 25 gram sachets, which only took about 5 days door-to-door to UK.
Put 0.3 grams into a 500 ml bottle of water and sip all day.
Now I had lost virtually all left leg function, and got drop foot, and for nearly a year have only been able to move the 2nd and 3rd toes on that foot. Yesterday and today I am now able to wriggle four toes.
My wife suggested this was imagination and I said "Watch". She said "Wow, you're right!"
Obviously this is not going to do anything for my EDSS Score (6.5) but it is encouraging.

What remains to be seen is the knock-on effect. I can be a little bit more active so I can do a little bit more exercise, so my muscle tone improves so I can do a bit more exercise, etc, etc, ...
PureBulk are not the cheapest, but they do have it in stock (and I am cautious about people who quote very cheap prices and just "happen" to be out of stock) and it works out at something over $1 per day.
I am pleased that somebody convinced me to give it a try
G

Do you have a scale to measure out the .3 grams or do you just eye it?

[Freddieturtle]

Biotin Price!!

Crazy expensive but found that you can get a six month in powder form supply for $110 delivered within 5 days. Compounding pharmacy in Berkeley wanted $600 for 90 pills. My MS doc at UCSF says there's no downside in taking high doses of Biotin. It's good for your hair and nails. Bonus.

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[angel00113]

Biotin

With the news about 'biotin' for progressive MS coming out, recently, I hope that it is really a positive report from the AAN's annual meeting. Does anyone take this supplement, regularly? What amounts? How often? In what dosages do you take? Does the supplement give you any side effects? I have to investigate the RDA, but I will not take 'mega' doses unless I clear it with my doctor. Any ideas?

jerry d, i take a 5,000 mcg gel tablet each day. Helps with hair growth; hair was falling out. Helps hair growth, nails, skin, liver. What I remember from the article. Hope that helps.
Oh, no side effects.

[headrift]

Okay, so I "officially" have RRMS, but I'm going to look in with neuro on Friday to see if I can get a referral to somewhere else, maybe University of Utah. The locals don't inspire much faith.

Anyway, I ordered some Biotin last night, should be here sometime next week.

8mg tablets, 120 count. At twice a day, that's 16,000mcg for about two months. Sounds good to me, and it doesn't sound like there will be side effects aside from trimming my nails more often. *shrug*

Question is... should I re-plan for two tablets at a time, twice a day? The 300mg tests are a little beyond my financial means, and a 32,000mcg/day for a month is all that is doable. I'm just hoping for the best right now. Being able to walk correctly is the goal.

Any comments or pointers would help, and be greatly appreciated.

[angel00113]

Biotin

Ive been taking bioten for four years. To reply to your question, yes, I noticed a big diffencein haair growth and thickness plus nails also. Hope that helps.
Also, I take 5,000 mcg a day.

[sarah859]

Hi I take 100mcg as per the research 3 times a day. I have found it to be great for my energy and bladder. I buy from multiplesupplements and buy their MS complex for a complete MS supplement solution, but they have just launched a pure biotin product called Biotin Boost. My nero suggested and I thought what have I too loose. And it has been great! Try it! But be careful where you buy as like all supplements all are not equal.

[Dreams008]

Have been taking 300mg, made by my compound pharmacy, for seven months. Trying to be positive, but have not noticed any improvement. In fact, I feel as though I'm still progressing.

[LuNap]

Have been taking 300mg, made by my compound pharmacy, for seven months. Trying to be positive, but have not noticed any improvement. In fact, I feel as though I'm still progressing.

Have you felt any improvement yet? I think it takes on average 9-12 months. What kinds of prices have people been paying for the 100mg?