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    New results -high dose biotin

    http://www.medday-pharma.com/news-an...erosis-at-aan/

    #2
    my fingers are crossed! Thank you for this info.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      cautiously optimistic

      Yes, my fingers crossed too! My UCSF doctor has been awaiting these results so I will check in with her re results. I have PPMS with walking getting more difficult though no active disease past 5 years (no inflammation on MRIs)...from reading the study sounds like this group of us may see some benefit. Stay tuned!

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        #4
        I was on 300mg of Biotin for about 8 months and saw no improvements. In fact, I just started progressing even more.

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          #5
          I reckon Biotin works well to be honest. Feel there has been improvement. Would rather take Biotin than Gilenya, trying Tysabri now but Biotin has been great.

          Comment


            #6
            Thanks for the article AP.

            If I understand it correctly (read it a couple of times), MD 1003 Biotin has been shown to be very effective in treating progressive MS, without active relapses.

            I'm pretty sure that the results are from the Phase III clinical trials, shown to be both a safe and effective treatment.

            So.......anyone know what is next step for this to be available for us? Seems like it should get through quickly?

            I do take biotin, which is included with my B-Complex, but is only a 300 mcg dosage. MD 1003 is 300 mg, which is 1000X what I am taking.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              my doctor told me that she would be more than happy to write me a prescription for it, but the insurance company denied it. the phase 3 trial was not completed yet. I will trying again.
              hunterd/HuntOP/Dave
              volunteer
              MS World
              hunterd@msworld.org
              PPMS DX 2001

              "ADAPT AND OVERCOME" - MY COUSIN

              Comment


                #8
                Originally posted by hunterd View Post
                my doctor told me that she would be more than happy to write me a prescription for it, but the insurance company denied it. the phase 3 trial was not completed yet. I will trying again.
                Ok, thanks Dave.
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  My doctor also wrote a script for it, but you don't actually need a script for this. And I found a source for $45/month's supply. I'm pretty sure a link won't survive moderation, but there's a biotin for progressive MS group on Facebook where you can find these suppliers. If you can afford it, I can't think of one rational reason not to do it. Especially since we have nothing else.
                  PPMS
                  Dx 07/13

                  Comment


                    #10
                    Originally posted by hunterd View Post
                    my doctor told me that she would be more than happy to write me a prescription for it, but the insurance company denied it. the phase 3 trial was not completed yet. I will trying again.
                    Hey there. I can tell you from my work experience that most insurance companies do not cover this because Biotin is actually an Over-The-Counter medication, even if done as a prescription item.

                    Comment


                      #11
                      hi all,
                      I tried it for 6 weeks. 100mg x3 daily. compounded by good pharmacy. my energy was better, and I could sleep thru the night, without getting up to pee. infact my bladder became normal. after 4 weeks I started getting weakness when lifting my foot. I stopped and called my ms dr.. I am going to restart in a couple weeks. my doc is going to have me take 50mg x6 daily, to give me a better response. questions have been raised as to whether medday is using a extended release formula. I am ppms and 66 year old.

                      Comment


                        #12
                        Originally posted by barryrado View Post
                        hi all,
                        I tried it for 6 weeks. 100mg x3 daily. compounded by good pharmacy. my energy was better, and I could sleep thru the night, without getting up to pee. infact my bladder became normal. after 4 weeks I started getting weakness when lifting my foot. I stopped and called my ms dr.. I am going to restart in a couple weeks. my doc is going to have me take 50mg x6 daily, to give me a better response. questions have been raised as to whether medday is using a extended release formula. I am ppms and 66 year old.
                        Barry Thanks for the update.

                        Increased energy, good sleep, and normal bladder sounds fantastic.

                        Best of luck to you when you restart the 50mg 6X daily, and let us know how it goes.

                        Take Care
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Originally posted by barryrado View Post
                          questions have been raised as to whether medday is using a extended release formula.
                          That's the obvious question, because an extended release formula is the difference that will allow MedDay to patent high-dose biotin and enable them to have it approved (at least in the US) as a prescription drug. Otherwise it's just another OTC nutrition supplement that other companies can provide more cheaply. And they certainly didn't go to all this trouble and expense to allow anyone else to make money from it.

                          Comment


                            #14
                            Right Level?

                            So, I have been taking 100mg per day for about a year.

                            My last blood test included a test for Biotin.

                            The level was >3600pg/ml, against a reference range of 221 - 3004.

                            Doc said to cut back on my dosage.

                            Is there a consensus/opinion regarding 'ideal' level in this study?

                            Comment


                              #15
                              Originally posted by J-Bo View Post
                              My doctor also wrote a script for it, but you don't actually need a script for this. And I found a source for $45/month's supply. I'm pretty sure a link won't survive moderation, but there's a biotin for progressive MS group on Facebook where you can find these suppliers. If you can afford it, I can't think of one rational reason not to do it. Especially since we have nothing else.
                              Hey J-Bo where did you find biotin for $45 a month?

                              Thanks

                              Comment

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