Where is the interest in the Biotin studies?

[JerryD]

I would think that the 'news' about MedDay Pharmaceuticals' successful studies using biotin to treat progressive MS would get 'much' more 'coverage' in the press, especially on this site, than I have seen! From what I have gathered, these studies have been hugely successful in France! The use of 'biotin', in high doses, is the first time in history, that there have been some positive changes in patients with progressive MS. Where is the 'hoopla' ? Or am I being foolish ? Is this info a hoax or a 'game changer' ? What's the deal ?

[Poolwatcher]

It is HUGE news but isn't a moneymaker.

And what about the study that showed Ceylon Cinnamon cured EAE in mice ( experimental model of MS)

[JerryD]

I am disappointed with the members of this board. My disappointment is because the very first time in history that a drug company has shown that studies have had positive results of a therapy that has never been used previously and this therapy was used to treat 'progressive MS patients'. And not a word from the 'peanut gallery'. Hello... Is this mic on? Are my lips moving? Are sounds coming out?
?

[kelm10]

keeping an eye on this.

Jerry,

Thank you for trying to get members interest. I do not currently have time to look into the research of this. What was the statistical significance of this research.

I have within the past 3 months started being a caregiver for an elderly aunt. This leaves me little time for researcing this. So, thank you again for saying something on the message boards. But, my curiosity with any research, is the statistical significance of the results. This can be set up by the researchers to show good results, but, they have to show the significance, to see if it has been set to make it look better then it is.

[J-Bo]

Jerry, I have posted twice in the last few days in the Biotin thread that you started in I Can Relate > PPMS. Sometimes on this forum, I feel like that Nationwide commercial where Mindy thinks she's invisible.

[poohb3ar]

hi jerry,
glad you're so interested in the Biotin studies. it is exciting if it turns out to be as wonderful as some are claiming.

i'm confused as to why you think there's no interest in the studies at MSW.
there are 6 other threads about Biotin in less than a month.
One where Marco, a Board member, goes into detail about the study and others that have links to the studies. all of which you've commented on. (type in 'biotin' in the top right search box or go to Marco's detailed thread
Progressive MS: Positive Phase 3 Trial Results

it's wonderful that you're so involved, that's what makes MSW such a wonderful site- amazing members!
we're all here to encourage, learn and listen to each other.

the 'Board Members' are no different than anyone else. they all have MS, some are worse than others, some have full or part time jobs or like mary, have other struggles going on in their lives.
this site is run by MSrs for MSrs on a volunteer basis in their spare time.

your input has been very encouraging and informative on the other threads, thank you for bringing so much attention to what may be a fantastic breakthrough!

how is your experience taking biotin going?
I know i personally am waiting to see what the complications mentioned are before getting too excited. unfortunately there's been a lot of great strides come and go for MS.
I hope and pray that this is one that really will deliver since it is so reasonable.

hang in there, while we all try to get the whole 'scoop' on biotin.

God bless ya!

[Thinkimjob]

Not lack of interest; lack of iPad. Airplane mode. Court reporter duty. I truly hope Bioten works.

[KatieAgain]

Its Just Too New

Jerry

I read the Biotin news. I just don't get real excited over this stuff anymore.

There was a lot of hype on Estrogen Replacement Therapy that they were holding and I think still are some pretty significant trials on Estrogen. Well, even though I was not in the trials and I was not in Menopause, I was taking the exact same drug (for other medical reasons) at the exact same dosage used in the trials.

Did it work? All the new lesions on my C-Spine and Brain Stem say no.

I have been through 4 different MS Drugs and the only one that has actually stopped Progression is TY...but I still have some exceptionally wicked flares and I have severe drug-induced anemia that has to be treated now with infusions.

With that said, I don't completely ignore everything. My Vitamin D Level rang in at 102 last month. I even checked all the supplements my MS Doc has me on to see if Biotin is on it.

I do however think the Phase 3 trials on Biotin are interesting, only because all the participants decreased their EDSS by .5-1.0 points. This is not a cure, but if this indeed accurate...everyone should be on Biotin soon...just like Vit D. Because every little bit helps.

I think this will get more attention at the International MS Conference when all of our Specialists get to throughly review the data...so hang in there.

[hunterd]

I can only echo ( and not as well) what Poob3ar and KatieAgain said.

[diggstech]

I think the biotin studies are very promising. It was a controlled study with 150 patients. I'll take a 0.5-1 EDSS improvement anyday. Tysabri stopped all new lesions in my PPMS 5 years ago so anything that decreases disability is of interest to me. If there has been no hoopla perhaps its just that PPMS patients are just 15% of the population. The RRMS side being so numerous gets most of the action, not the least because its easier to do studies for but progress is slowly being made on PPMS.

[JerryD]

Thanks for your responses. I appreciate them more than you all can imagine. The reason for my excitement is simply because this is an attempt to treat 'progressive MS', which is my dx. This 'biotin' use is significant to me because it is the first time that there has been any physical improvement shown in measurable data in 'progressive MSer's.
Yes, it is possible that the data was manipulated by the researchers. That would be a 'dirty pool' . I hope that this turns into a 'real game changer' ! Hey! This mic is on !

[pennstater]

For me, to fully understand research, I have to tread multiple times, look up some things I don't understand, make notes, and then try to piece together what it really means.

It takes time and energy, which is limited. It is not that I am not excited that there is potential, I am just going to be much later to the excitement.

[Marco]

I am disappointed with the members of this board. My disappointment is because the very first time in history that a drug company has shown that studies have had positive results of a therapy that has never been used previously and this therapy was used to treat 'progressive MS patients'. And not a word from the 'peanut gallery'. Hello... Is this mic on? Are my lips moving? Are sounds coming out?
?

Take a deep breath ...

[JerryD]

Hey Marco! What are you trying to do ? Be the 'voice of reason'?

[Marco]

I think many people are cautiously optimistic about Biotin, but are leery of new treatments especially in the development phase. Too often, we've had a silver bullet in the making that did not turn out well. My hope remains in my faith and not in Biotin so with or without it tomorrow will be ok. At my last neurologist appointment we did have a brief discussion about Biotin. I'd prefer to keep the conversation private so other people do not take it as medical advice. I am not officially SPMS, but I've had the disease over 25 years and my relapses are starting to become less frequent. I believe this is exciting news, but I too remain cautiously optimistic.

I'm also waiting to see how the drug company manages to charge $5,000/month for an existing vitamin that currently costs $50/month.

Jerry I continue to hope and pray for you --- with or without Biotin (preferably with)!