No more positive effect from biotin after a long period

Biotin is an emerging therapy for the treatment of secondary progressive MS.

No more positive effect from biotin after a long period

Postby zen2010 » Wed Jan 17, 2018 6:40 am

Hi,

After 18 months under Qizenday, I realized I had no more positive effect from high dose biotin...
My neurologist told me it was useless to keep taking this med.

She said positive effects won't come back cause my body got used to it.

I am disappointed as this was really working on me.

Anybody else is facing this issue?

Cheers
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Re: No more positive effect from biotin after a long period

Postby Marc70 » Wed Jan 17, 2018 9:11 am

zen2010 wrote:After 18 months under Qizenday, I realized I had no more positive effect from high dose biotin...
My neurologist told me it was useless to keep taking this med.
She said positive effects won't come back cause my body got used to it.

Anybody else is facing this issue?

This point was made to me as well. However, the question is what you consider a positive effect and/or why you feel that Biotin doesn't work for any longer.
Everyone usually talks about walking improvements, but not about the other effects.

I was on highly concentrated B7 2x150mg for 18 months shooting for a better EDSS.
The improved Fatigue and Bladder came after about 3-4 months and stayed while the improved walking distance remained elusive - even after 18 months.
So after 18 months, I switched to a cheaper supplier and reduced to 2x100mg daily.
I've given up on the hope of better EDSS but the Fatigue/Bladder improvements have remained so I'm continuing and happy.

Good luck!
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Re: No more positive effect from biotin after a long period

Postby ElliotB » Wed Jan 17, 2018 9:57 am

Biotin is one of many important "B" vitamins and you are probably best off continuing to take it along with a really good B multi. There are many supplements everyone should take, whether they have an illness or not.
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Re: No more positive effect from biotin after a long period

Postby Quest56 » Wed Jan 17, 2018 2:29 pm

I have no idea what your out-of-pocket cost is for Qizenday, but there are several high-dose biotin supplements available. You might save some money by switching to one of these.
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Re: No more positive effect from biotin after a long period

Postby Anonymoose » Wed Jan 17, 2018 8:55 pm

I wouldn’t give up so easily. The only possible/obvious explanation (I can think of) for a nutrient to stop rendering once experienced benefit is depleted co-factors, not all of which are documented in studies or known by experts. I’d start by lowering biotin dose to allow for recovery of cofactors (so whatever process biotin is involved in doesn’t eat up everything before it can rebuild...that makes me think you might want to look at stored nutrients, a lot of the b’s aren’t stored) adding b complex, occasional moderate dose sublingual b12, and a multi. If that doesn’t kick things back into gear, explore the rest of the nutrient spectrum from there. Maybe look at lists of things that biotin helps like hair, skin, and nails. Then try other things that help hair, skin and nails...vitamin c, iron (if female), copper, zinc, calcium, fatty acids, etc. Or run through jimmylegs list of nutrients that often test low in Msers. Also, keep track of what you’re eating. Sometimes I feel better after eating a certain food so I look up the food’s highest nutrients and start trying the supplement form of those nutrients to isolate what made me feel better. Then I know what to test, supplement, and try to increase in my diet.

You could also get tested for nutrient levels but it’d be an extensive, expensive list to cover.

Hope you find something that works. :)
(I’m not an expert in anything. Trial and error within safe parameters just works best for me personally)
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Re: No more positive effect from biotin after a long period

Postby zen2010 » Thu Jan 18, 2018 2:17 am

Hello,

Marc70 wrote: the question is what you consider a positive effect and/or why you feel that Biotin doesn't work for any longer.


Mainly: energy levels higher & more fluidity while walking and talking.

Also, the biggest lesion in my brain disappeared . It might be related, but my constant fatigue totally vanished.
Fortunately, fatigue ain't back, so I guess the lesion is still missing.


ElliotB wrote:Biotin is one of many important "B" vitamins and you are probably best off continuing to take it along with a really good B multi. There are many supplements everyone should take, whether they have an illness or not.


Yep, I will get my blood test results on Monday, so 1)I might come here to get advice and 2)I will choose the right B multi

Quest56 wrote:I have no idea what your out-of-pocket cost is for Qizenday, but there are several high-dose biotin supplements available. You might save some money by switching to one of these.


Cost of Qizenday is crazy (70 bucks for one cap of 100 mg) but it doesn't matter as the cost is fully covered by health insurance.

Anonymoose wrote: The only possible/obvious explanation (I can think of) for a nutrient to stop rendering once experienced benefit is depleted co-factors, not all of which are documented in studies or known by experts.


Interesting...
I will have a look at this "co-factors depletion" for sure.
Indeed, there must be an explanation for this issue

Unfortunately, I noticed that neurologists (experts) are not helping regarding nutrients that can help msers.
One good example : I was suffering from spasticity and the only advice I got from my neuro was to keep doing exercises...
I got one advice from Jimmylegs about Magnesium and, amazingly, the problem was solved only 2 days after!

When I told this to my neurologist, she didn't really pay attention to my comment.

So, again, I will have a look at this "co-factors depletion" for sure.


Thank you all for your feedbacks
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Re: No more positive effect from biotin after a long period

Postby jimmylegs » Thu Jan 18, 2018 3:43 pm

odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: No more positive effect from biotin after a long period

Postby jimmylegs » Sun Jan 28, 2018 5:55 am

bloodwork updates?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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