I am wondering if anybody takes Biotin for PPMS? My neuro suggested taking it (pay myself) I am baffled by the quantities involved and wondering who supplies it in 300mg tablets at a reasonable cost. research did 300mg/day Neuro suggested taking 100mg if I can’t find larger doses, but that still means 10 tabs a day . I bought 960 tabs for £10 aargh
There is a whole thread on this forum, and at least one, if not two on Everyday Living about Biotin, not to mention a Facebook group, which gets mentioned on all the threads.
I’ll bump them up so they’re on the front page again, but I am on the slowest PC ever, so may take a few minutes.
Ladymoth - Do look at the posts on Biotin - on Everyday Living and Primary Progressive.
Well done your Neuro - - at last one that is keeping up with latest research.
Now - have you followed the MedDay Trial. Be worth you joining the facebook group called Biotin for Progressive MS. ln 5 weeks they have over 600 members worldwide.
The best Biotin to use is the pure powder - l got mine from BulkPowders US and there is also Pure Bulk US. Soon - l am sure a Uk company will step up. !00g packet cost me £120 - enough for 333days on the top amount of 300mg daily - thats 100mg in 3 doses. lt is a tiny amount - so you will need to get some micro scales - the type that weigh jewellery. l got mine from Amazon UK called Smart Weigh.
So as you can see it is quite cheap to buy - cheaper then prescriptions if you pay for them. As it is a food supplement l cannot see GP’s being able to prescribe it.
Doing well on it - and so are all the others taking it. Most of us are also taking pure Thiamine B1 - this goes well with the B7 Biotin.
Any problems - l will answer as best l can. But give your Neuro a hug - next time you see him/her
ln US some have managed to get theirs via a prescription from neuro. But it is costing their health insurance provider a fortune doing it that way.
I am just going to start on biotin, after delaying it for a week because of a holiday, so if anyone is about to start it too, let’s hold hands and swap info. And just to cheer us all up, my lovely son has today run the Edinburgh marathon and raised over two thousand pounds for MS.
I have , yesterday , ordered pure Biotin from Bulksupplements.com and scales and thiamin 500mg from Amazon. Hopefully, all will arrive in a few days.
Couldn’t find the suppliers Spacejacket recommended. Hope I’ve ordered the correct stuff !
My apologies John - l meant Bulk Supplements. Bulk Powders is the UK company that l have been in touch with - in the hopes they will start supplying Pure Biotin.
What weight did you order. l got 100g. As it is enough for nearly a year - and at £120 - worth a gamble. Also l was concerned that they might run out - which they did for a few days - and also they might up the price when they realise we are desperate for it. Hopefully supply and demand and a bit of healthy competition will keep the cost down.
Make a note of when you start and write down any ‘differences’ in how you feel/move etc. Even slight improvements. Take it after a meal - and l put it on the rice paper-pop it into my mouth and let it dissolve for a while before swallowing it down with water. This way - l am hoping that it gets absorbed into bloodstream quicker - rather than being past through the gut.
I ordered 100g also, although I paid an extra 50$ for quick delivery. Want to start asap !
Just placed my order too. Scales next.
Really quick service. I ordered Monday morning and it was dispatched Monday afternoon, so should be here from US by the weekend.
Had acupuncture today - anyone else find it helps? My acupuncturist could tell just by taking my pulse that my legs and feet were particularly hot and heavy with trapped energy(makes sense with PPMS). Definitely better tonight.
Tried a short course of acupuncture (5 sessions) but as I didn’t feel any improvement in my symptoms I gave it up…worth a trial at least cos you never know what can help…can notice an improvement since starting Biotin though… so that is good …
Biotin pills arrived from Amazon this morning. Small and easy to swallow - started on 10 today with no ill effects so far. Wanted to make a start before the powder arrives…Breaking Bad comes to rural Norfolk…
Biotin - it’Saul Good man!
Been on capsules and noticed improvements. Now started on the powder, with the scales and ricepaper. My neuro was impressed that I was doing this and said that I have nothing to lose by doing it.
One warning I have is that it will give you incorrect thyroid blood tests - ie make you appear hyperthyroid when you are not. Essentially it will interfere on tests which use “assays”.
The biotin from Bulk Supplements USA states ‘Pharma’ on the packet. I assume this means the biotin is pharmaceutical grade. (I hope!)
Just looked at Bulk Supplements website again . It clearly states ‘Pharmaceutical grade with no fillers’.
You are right John - it is ‘pharma grade’. They are trying to put us off using it because it is cheap - and they are not making any money out of it.
MedDay - who did the trial - are trying to ‘patent’ the dose of Biotin they used - lt is not a drug - it is classed as a food supplement. And - as it is water-soluble - you cannot over dose.
Don’t be put off.
l saw the announcement by MedDay about the Biotin trial in the New Pathways mag - this week. l have emailed Pathways telling them about the facebook group who are now over 700 members. All trialling the Biotin themselves. Far more then were on the MedDay trial.
l will copy the announcement in a new thread for PPMS’ers to see.
Biotin has arrived today from US - but is in local post office! Card through letterbox saying I have to pay £32 customs duty! Anybody else had this? Will collect later today…