Results for the Biotin Trial should be out at 5pm today. A facebook group has been formed called Biotin for Progressive MS.
There are such a lot of PPMS/SPMS ers joining it. They seem a super lot of folk - and are all excited in this trial. Most are already taking Biotin. l have been taking a high dose - daily - not as high as the trial - for the last 4 weeks. And l have found l have more energy. Nails are growing at such a rate.
Discovered that Biotin is available for horses - to improve hoof growth/condition. ln fact l do have a tub in the tack room. You do have to be careful not to buy the one that has calcium in it - because at a high dose it would not be helpful. And - you need to take it with food. On an empty tum it can make you feel nausea.
This is an exciting time for people with progressive MS - well all of us because everyone seems to eventually become SPMS.
We have heard - so often of miracle cures - so often got our hopes raised. So lets hope this time it is good news. And Biotin is not an expensive toxic med.
Fingers crossed now. And this is the 3rd phase - so they must think it has the potential.
MedDay reports positive pivotal Phase 111 study results with MD1003 in patients with Progressive MS.
First time a drug has decreased the rate of progression in addition to improving a significant proportion patients with Progressive MS.
This is not a toxic/dangerous drug - no side effects. And hopefully a chance of finding even more answers. Anything to help us feel better and with the benefits of improved skin/hair/nails and bone condition.
You can read the list of ingredients of the product - it does have additives -but will say whether it has calcium. The D-Biotin is the one we need - and the only product l have found with no added calcium [now they all have something added as a filler]
is MRM D-Biotin no calcium
Country Life Hi-Potency
Nutri-Gold Biotin Gold.
l am still taking the supply l bought - that does have calcium in and is not D- Biotin - lnnopure and Natrol. l just feel it is better to take that form of Biotin for now until l can source a purer Biotin powder. As you cannot overdose - you just pee out what is not needed - l cannot see that there is any problem. l have read so much - so far - and have not seen anything saying it is toxic. Some of the fillers are rice flour and gelatine. lf l hear of anywhere that will provide us with a purer powder l will be telling everyone.
l am standing up better - balance and strength has improved. Yesterday, l noticed l could lift my knee right up and felt a slight movement in my toes!! All in the mind - shall have to wait and see.
l googled Swansons Health products - and signed on. Get 10% off this week. Ordered 6 pots of Country Life Hi Potency Biotin. lt is D-Biotin and without calcium 10.000mcg x 100. lt was about $35 - whatever that is in new money! Must be the cheapest l have found so far.
I had an appt with my neurologist on Thursday and he was just back from America having attended the conference and he was extremely underwhelmed with the trial results presented. He felt that , at least yet , that there is no real evidence of remyelenation. In the very small number of responders he felt there was evidence of increased energy and lifting of fatigue but not a lot else. He hopes they will continue with more trials to establish if they do have a longer term benefit but for the moment he felt the results are being hyped up too much. Won’t be the first time we’ve seen that.
I cant understand why they dont MRI the patients with improvement to see if any remylenation occured. I am not an expert but to me it would be an obvious test to do. Also nerve impulse tests that would test whether some remylenation had occured.
Neuros I have found are a bit glass half empty types !
I’ve been looking at biotin tablets online. Calcium can be named as talc on list of ingredients. To me it makes sense that B vitamins would help in some way as for years B vitamins have been known to help nerves.
Look at mirandasmsblog.com/2015/05/03/new-treatment-for-progressive-ms/ and D-Biotin without calcium can be bought very cheaply from Swansons Health Products a US company. They do Country Life hi-potency Biotin 10,000mcg x 100 for $5.99. And 10% off this week on orders.
Somebody on the Biotin for Progressive MS facebook group - is on his holiday in Costa del Sol. He asked the pharmacist in his local chemist about Biotin - the pure powder - and will get it in a few days. So l think we could all ask our pharmacists - it is not a prescription drug - its classed as a food supplement. lt will cost him 50 Euros for 3months worth - if he takes the high daily dose of 300mg.