New treatment forum - Biotin

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New treatment forum - Biotin

Postby NHE » Thu May 21, 2015 2:13 am

We now have a new forum dedicated to the discussion of MedDay's new biotin treatment for SPMS called Cerenday.

biotin-md1003-f56/
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Re: New treatment forum - Biotin

Postby undisclosED » Fri Dec 04, 2015 3:50 pm

Just a little clarifiation, the medication is named MD1003, and the trials were for PPMS and SPMS patients.

I'm glad to see the creation of a separate forum group / page for this here as I believe that Biotin is going to continue to be a hot topic within the MS community, especially for those with PPMS such as myself.
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Re: New treatment forum - Biotin

Postby NHE » Fri Dec 04, 2015 10:50 pm

undisclosED wrote:Just a little clarifiation, the medication is named MD1003, and the trials were for PPMS and SPMS patients.

Cerenday is MedDay's name for their high dose biotin treatment.
http://medday-lab.com/

http://www.ukmi.nhs.uk/applications/ndo ... rugID=6454
Generic Name: biotin
Trade Name: Cerenday
Synonym: MD1003
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Re: New treatment forum - Biotin

Postby undisclosED » Sat Dec 05, 2015 7:20 am

Correct about the name, the important item is that it is for PPMS also.
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Re: New treatment forum - Biotin

Postby tzootsi » Sun Dec 06, 2015 7:26 am

My wife has a mild case of PPMS, has been on approx 250 mg of pure biotin for 4 months. She has seen some small improvements already - purple foot is now normal looking, better bladder, more comfortable lying in bed.
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Re: New treatment forum - Biotin

Postby Merlyn » Mon Jan 04, 2016 1:17 pm

Biotin can substitute for insulin!???

This whole thing that MS and diabetes are related:

Journal of Immunology (April 1 and February 15, 2001).

http://www.sciencedaily.com/releases/20 ... 074643.htm

Multiple sclerosis (MS) and type I diabetes mellitus are autoimmune disorders, where the body's immune system attacks its own tissue. The diseases are entirely different clinically, but have nearly identical ethnic and geographic distribution, genetic similarities, and, as is now known, shared environmental risk factors.



https://www.raypeatforum.com/forum/view ... 215&t=8043

I have posted more information and or the topic of the GcMAF topic…
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Re: New treatment forum - Biotin

Postby 1eye » Fri Apr 01, 2016 2:14 pm

Has anyone on biotin 300mg had any results? I think my walking speed has improved but my stamina not yet. It is getting to be around the 1 year mark. I will keep on it because it seems to have a positive effect on my lower digestion. I also use rice bran as a filler so I get some vitamin B that way...
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Re: New treatment forum - Biotin

Postby CureOrBust » Sat Apr 02, 2016 5:10 pm

1eye wrote:Has anyone on biotin 300mg had any results?
I wondered the same thing, so created the following pole, in the hope to get some general self reported results:
biotin-cerenday-md1003-f56/topic27563.html
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Re: New treatment forum - Biotin

Postby DrGeoff » Sun Apr 03, 2016 2:04 pm

Being EDSS 6.5, I did not expect major improvements.
What I did get were some small improvements in the ability to move my left foot/ankle/toes.
These were observable by my physio.
Lately, I have been able to walk (lurch) a few steps without support.
The net effect is to make it easier for my FES to help my walking with a rollator.
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Re: New treatment forum - Biotin

Postby UWE59 » Tue Aug 02, 2016 9:15 am

1eye wrote:Has anyone on biotin 300mg had any results? I think my walking speed has improved but my stamina not yet. It is getting to be around the 1 year mark. I will keep on it because it seems to have a positive effect on my lower digestion. I also use rice bran as a filler so I get some vitamin B that way...


I am on Biotin 300mg since 6 month with no benefits up to now. I will finish 24 month.
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Re: New treatment forum - Biotin

Postby 1eye » Wed Aug 16, 2017 3:16 pm

Well, Biotin comes into its own in Canada. I was given a prescription for it by my neurologist today. I asked her, and she said it is being prescribed to all secondary progressive pwMS. It is not being manufactured. I am to get it from a compounding pharmacist. The dosing is a bit strange because it is three times a day 100 mg. That may be just because 300mg doesn't fit easily into standard capsules. I use a 00-size capsule, and cut it with 300mg of rice bran powder. I have been on it for 2 1/2 years already. I figure nobody will warn me not to take all 3 at once, because that's what the French trial subjects probably did, and I bet they used 1 capsule.b

Improvements I have seen: digestion (I don't have to worry about Codeine so much anymore)
hair (it grows all over my body now: I never had chest hair before)
stamina and strength -- I am now doing exercises with a cable-weight machine. I am playing a lot of
piano. The weight training has helped my grip strength on my weak side, as well as arm and core
muscles. I was playing catch with a 5 lb sand ball and catching it on the weak side. I will be doing
ball-balancing which is good for my core. I do sit-to-stand exercise which has helped me get in and
out of my recumbent tricycle. I might be walking faster.
Improvements I have not seen yet: Dorsiflection of my weak side still not there. I wear an AFO which does not help. Thigh muscle on my weak side does not work.

I have significant pain in my lower back. Will try a back brace.

Did 15km on my tricycle today.

Good luck with biotin.
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Re: New treatment forum - Biotin

Postby 1eye » Tue Sep 19, 2017 1:37 pm

The action of Biotin might have something to do with one of its side-effects.

Today I went to see an endocrinologist because my GP had noticed my thyroid was sky-high.

I told her about taking 300 mg per day of biotin. What she said was interesting. Apparently biotin can change thyroid test results. Apparently it acts as a signaling molecule between the pituitary and the thyroid. Presumably the effect is to turn the thyroid down, which may, in my case, result in less heat sensitivity. Wouldn't that be nice?

http://www.pharmacistanswers.com/thyroid-function-tests-while-taking-biotin.html
By Stacy Holcroft Pharm.D
biotin can interfere with your blood test results. In simplest terms, the tests used to measure thyroid hormone and TSH (Thyroid Stimulating Hormone) levels have molecules that bind to biotin which can result in either a false low or false high result in the test. It can artificially throw off the blood test levels in either direction. Most studies tend to show that biotin causes more false-low measurements of TSH than false-high measurements but again, it can go either way.

Additionally, please make sure you let your doctor know that you have been taking biotin supplements, and let him/or her know how many days in advance of your test you decided to discontinue. The practitioner may also have experience in this area and can provide some helpful information for you. In addition to taking an oral biotin supplement, it is important to note that many foods contain biotin naturally. Some of these foods include sunflower seeds, walnuts, pecans, green peas, lentils, carrots, mushrooms, cauliflower, avocado, organic dairy foods, egg yolks (not the white), and organ meats (like liver). Dietary sources of biotin typically should not have much of an effect on the tests however since supplementation doses often far exceed the amount you get in your diet.

​​​​​Please be aware that the biotin doesn’t actually affect your true thyroid hormone levels at all, just the test results.
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Re: New treatment forum - Biotin

Postby NHE » Wed Sep 20, 2017 1:33 am

1eye wrote:Today I went to see an endocrinologist because my GP had noticed my thyroid was sky-high.

I told her about taking 300 mg per day of biotin. What she said was interesting. Apparently biotin can change thyroid test results.

High dose biotin can affect many tests. Here's a list put together by Medday.

http://medday-lab.com/index.html

To understand the interference and why biotin produces either a false low or false high result, have a look at their sandwich and competitive immunoassay schematics.

Sandwich Assay: http://medday-lab.com/sandwishAssays.html

Competitive Assay: http://medday-lab.com/competitiveAssays.html
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Re: New treatment forum - Biotin

Postby tzootsi » Fri Sep 22, 2017 3:59 pm

I believe that high biotin in your blood affects the chemical the lab uses in many of it's tests. I don't think it affects the thyroid itself, but i could be wrong.
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