Hi all!
Now been on Biotin 300mg and Thiamin 500mg for four months. I believe that my bladder is functioning better. Only one pee at night instead of three or four! No reduction in fatigue or mobility improvements, however .
Can any other Biotin users say whether they have had any genuine benefit, so far?
johnh
Yes John,
Three months of 300mg daily, and am seeing a small improvement in my ability to make small movements with my left foot and leg. Had a discussion with my neuro on Biotin today. His official position is “there is not enough evidence”; his practical attitude is " if it works, stay with it".
On fatigue, he wants me to taper off Gabapentin very slowly - right down to the point where nerve pain shows up again. I did read in one Gabapentin product leaflet that fatigue was a side effect, but this disappeared from all the later leaflets.
have a look at Geoff’s Biotin Blog ( http://gnh1.blogspot.co.uk/ ), and see several of the posts that Spacejacket has made on Biotin.
Geoff
Hi !
I’ve been taking 300mg of Biotin (…over three doses) every day since 13th September 2015, but haven’t noticed any benefit whatsoever to-date. I’m hoping it’s too soon for it to start working, because my balance, urinary urgency, foot-drop, weakness & intention tremor are as bad as they were before I started.
Don’t know how long to persist with this coz I’m already finding it tough to continue as I’m not even seeing tiny improvements to encourage me to carry on.
At the moment, I can’t figure out why I thought Biotin would ‘work’ when no other medication over the last 17 years has been effective for me ?!!
Dom
I seem to recall the trials showed improvements between 3 & 6 months. I’ve been on 100mg 3 x daily since June. During that time I had a very adverse reaction to Baclofen, which set me back big time. However, my bladder urgency & nocturna is dramatically improved. My balance very poor, broke a rib a few days ago & nursing tennis elbow on the other side. You really couldn’t make it up.
yoga previously aided balance & fatigue, but can’t do much currently. In other words, difficult to say if any other positive changes. I think it really is a long term option, so I will carry on for the foreseeable future. PPMS leaves you with little other option, nothing to lose.
I’ve been taking 100mg daily for about three weeks.
I realise that is well short of the doses that appeared promising in trials, but I’m cautious of these ultra-high doses “with no side effects”, because much the same theory was advanced for Vitamin D - until someone here did manage to overdose on it.
So my motto was - and still is - “moderation in all things”. I’m not sure anything in very high doses is safe and risk free - we know that you can die of drinking too much water. So I’m not yet satisfied that “the sky’s the limit” as far as dose is concerned, and am still on a very conservative dose.
In reality, I’m taking very slightly more than the 100mg, because I think one of my other supplements contains a trace amount of biotin, but still nothing like enough to take me to 300mg.
I may be on 105 or something.
Can’t say I’ve noticed anything so far.
Perhaps a few more times when I’ve gone right through the night without needing the loo, but they’re still the exception, rather than the rule, and much depends on how tired I was when I went to bed. IF I allow myself to get sufficiently tired (skip the afternoon nap), I seem to be able to sleep through the urge without having an accident - but still wake up busting, and can’t languish long in bed.
So I can’t say with any conviction there’s been a real improvement. I don’t know if this is because I’m not taking enough, or haven’t yet persevered long enough, or just because I’m going to be a non-responder.
Tina
mcg?
Sorry MontyMole …you’re quite right !!
I should have said, I’ve been taking 300mcg per day - 3 doses of 100mcg (…or 1mg)
(…sometimes I get my Milli- and Micro- mixed up )
Sadly, still not helping with anything at all so far !
Dom
I guess, Dom, you want to up your intake.
The MedDay trial results suggested 3 x 100 mg daily.
If you are going to see results, you can expect them in 3-6 months. I started to see tiny - and I do mean tiny - signs in about two months.
Geoff
My sincere apologies, DoctorGeoff !!
I am, indeed, taking 3 x 100mg of Biotin - NOT mcg as I previously stated
Got my mg and mcg wrong. Thank God my weighing-scales are set for the correct amount. (I assume MontyMole was referring to the measurements on a typical retail package ?)
I seem to having one of those days where I assume I’m getting everything wrong, so I tend to agree with anything that comes my way, instead of believing in myself. Was never this uncertain before, so thanks MS!!
Dom
I’ve been taking 0.3g daily since May and I’m quite a lot worse than I was when I started. My walking is worse and my leg and stomach muscles are weaker. I wake up when I need to turn over in bed and it’s hard to turn, even though I’m awake. Nightmare!?