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    Major hair loss - help

    Hi, I am new to this board. Used to be on brain talk a good bit, but been a long time.

    Dx 2001. No noticeable disability. Still work full time. But having some significant fatigue issues of late - reading here may be Tec related?

    Was on B from '01 - '12. Began having very serious inj site reactions. Got where no place left to inject so I had to stop B in 10/12. After several surgeries last yr, I still [& probably always will] have hole in cheek of my bottom about 1/2" deep and wide and about 3" long where the worst of my site reactions was. Told by surgeon and plastic surgeon that so much scar tissue is there that additional corrective or plastic surgery not possible. . .

    Started Tec a year ago. Other than my hair and the fatigue, very happy with Tec.

    Been taking 5,000 mcg Biotin/day since b4 start of Tec. Had thought I was losing hair since about time start of Tec. Seems exponentially more noticeable now. Probably lost 1/2 my hair. [Thin & fine to start with]

    Saw GP today. Front desk lady mentioned my hair looked different. When I said it is falling out. She realized that was the difference and apologized!

    Got recent blood test results back. GP said test #'s are best he has ever seen me have [heart attack '05]. He looked at all my meds re hair loss. He is convinced Tec is causing my hair loss. He is going to get in touch with Tec mfgr, but somehow I doubt that will be magic.

    So much for my hx. What to do about my hair? ? ? This is getting serious. I saw in an older post to try 2x amt of Biotin I have been taking so I will try that. BUT, please, suggestions, ideas welcome.

    May not get back here for a while, so Many Thanks in advance for your ideas, insights and wisdom,
    lawnerd

    #2
    Hairdresser freaked also at my hair loss after 6 mos. of Tec...

    Me too. I first stepped Tec back down to the original baby dose. We wanted to see if it would continue to work it's magic on my psoriasis at that low dose, even though I have heard the smaller dose doesn't do anything for MS. I continued a bit longer as psoriasis is also a horrible condition but the hair just kept a fallin' out. Like a lot of neuros, mine acted clueless about this hair loss side-effect.

    I stopped Tec all together, and the psoriasis returned, but so did my hair. I am no doctor but hair loss seems serious. I had Shingles this summer while on Tec also. My doctor did think that was due to Tec, however.

    I am broke since DD went back to school. The referendum did not pass and parents have to pay out of pocket for everything their kids do, so I am not on anything. Once Christmas is over, back to the Avonex and to the Dermatologist for more topicals.
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #3
      My neuro suggested Rogaine for hair loss. I haven't tried it yet but may need to soon.

      Comment


        #4
        thanks for your responses.

        My GP suggested Rogaine too. But, I looked online and found information that says Rogaine only works for hereditary hair loss.

        I bought some hair loss/growth vitamin/mineral pills last week. Will take them in addition to the 5000 mcg Biotin I am already taking. New pills contain about 1250 mcg Biotin as well as some other substances that are suppose to be good for your hair and nails.

        Obviously not a "quick fix" as my hair continues to fall out . . .

        I have to stay on the Tec unless something else comes along. For various reasons, I can't take any of the other disease modifying drugs.

        I was off everything for about a year 2012 -2013 [while I healed from chronic wounds caused by inject site reacts to B]. MRI I had right before I started the Tec wasn't good, indicates I must keep taking something.

        Wish I felt better about what future is going to hold for my hair.
        lawnerd

        Comment


          #5
          Try NIOXIN shampoo and conditioner. It's for thinning hair.

          I used it when I lost about half my hair from an antidepressant. It can be very disconcerting and anxiety provoking but it always grows back if you stop the drug. But it can also grow back even while on the drug as your body adjusts.

          Comment


            #6
            Biotin 5000 mg

            After reading on this site that people have taken Biotin for hair loss while on various of the DMDs, I am losing ALOT of my hair while on and after stopping Aubagio. So I started Biotin 5000. I did take it with food BUT I started feeling dizzy. More dizzy than usual. Anyone on biotin having that side effects/experience? I lost/am still losing alot of hair so I want to be on something for the hair loss but the dizziness is bad. Thoughts?

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              #7
              Question?

              Lawnered could you please tell me the brand of mineral and vitamins you are using?

              Thanks


              Diagnosed 6-28-14
              RRMS
              Alone we can do so little; together we can do so much. ~Helen Keller~

              Comment


                #8
                Originally posted by Remy9111 View Post
                Try NIOXIN shampoo and conditioner. It's for thinning hair.

                I used it when I lost about half my hair from an antidepressant. It can be very disconcerting and anxiety provoking but it always grows back if you stop the drug. But it can also grow back even while on the drug as your body adjusts.
                I use Nioxin (expensive!) and Biotin. I think my hair looks pretty good for my age...brown with a few silvers! As great as these haur helpers are, they didn't help while on Tecfidera. Even when I went back down to the starter dose, the hair just kept falling out!.

                Neither Biogen or my Neurologist claimed to know about this side-effect, so perhaps I am in the minority. I can't help but think that business-wise, the hair loss could be a deal-breaker for many women so they might not be in a hurry to reveal this particular problem...I don't know!
                Tawanda
                ___________________________________________
                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                Comment


                  #9
                  mild hair loss

                  When I wash my hair, there is more hair coming out but only sometimes. Some days it's fine....have been on Tec about 18 months. Hair loss right now not enough to give up Tec.

                  Comment


                    #10
                    Originally posted by dann View Post
                    When I wash my hair, there is more hair coming out but only sometimes. Some days it's fine....have been on Tec about 18 months. Hair loss right now not enough to give up Tec.
                    I agree. I would go bald and wear a wig if this drug worked for me!

                    Personally I am waiting for Plegridy. Thinking it is good for people who did OK with Interferon treatment. I did well as expected on Avonex, no side-effects, but this will be stronger...

                    My Neuro also said my bout with Shingles was due to TEC, but he told me to stop the drug until I was better and then continue back on it. I also had low, low WBC (out of normal range altogether) so this finally told me this wasn't the right treatment for me. However, I liked not injecting and how it cleared my psoriasis.

                    Good luck all! We learn so much from each other here!
                    Tawanda
                    ___________________________________________
                    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                    Comment


                      #11
                      side effects

                      I've had MS for 30 years and have only taken Avonex and Rebif. (Have taken Rebif for the last 10 years). I would really love to get away from the awful skin reactions/scar tissue and take an easier drug, yet I've read about the side-effects of Tec. Believe it or not, the hair loss scares me! I have fine/this hair as it is and could not tolerate losing any. The gastro part also scares me because I am thin and should not lost any weight. Any advice, experiences, statistics on the side effects? Thanks!

                      Comment


                        #12
                        mistakes - gosh!

                        I just re-read my post and saw mistakes. "fine/thin" and "lose" any weight. Goodness, it must be late at night!

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                          #13
                          loosing hair here too...

                          I've been taking the Biotin 5000 mcg as well, but am still loosing hair. I also have very fine/thin hair and it's very disconcerting.

                          I'm weighing my options of having my hair back or not having to stick myself with a needle. right now, not having much hair is winning out since besides hair loss, I don't have any other side effects from the Tecfidera.

                          I stumbled across something on youtube and various blogs about using monistat to promote hair growth. So I'm actually giving that a try because I can't afford to spend so much $$ on Nioxin shampoo.

                          I'm just crossing my fingers and hoping for the best.

                          Comment


                            #14
                            Originally posted by teacher4life View Post
                            I've had MS for 30 years and have only taken Avonex and Rebif. (Have taken Rebif for the last 10 years). I would really love to get away from the awful skin reactions/scar tissue and take an easier drug, yet I've read about the side-effects of Tec. Believe it or not, the hair loss scares me! I have fine/this hair as it is and could not tolerate losing any. The gastro part also scares me because I am thin and should not lost any weight. Any advice, experiences, statistics on the side effects? Thanks!
                            Biogen and my neurologist claim hair loss is NOT a side effect of Tecfidera. I beg to differ. I used Nioxin Shampoo and 5000mg Biotin to no avail. Even at the Tec starter dosage I stepped back down to while I was recovering from Shingles made my hair fall out (my neurologist DID blame Tec for the Shingles, however, if not the hair loss!).

                            My guess is that hair loss is a side effect for some, maybe a minority, but not for all. I never had a med do this to me before so I was suprised when it happened. You may be spared. You won't know until you try it. The shower drain will tell all. That was my first clue, and then later when I was constantly taking a sticky roller down my arms to get the loose hairs off and my ponytail diameter became non-existent !
                            Tawanda
                            ___________________________________________
                            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                            Comment


                              #15
                              TEC hair loss

                              Glad I saw this thread. I too have been losing hair and have been on Tecfidera about 1-1/2 years. Didn't make the connection until now. Always had thick hair but now I can see my scalp.

                              Started taking Biotin a year ago thinking it was normal hair loss but losing a lot of hair is not normal.

                              Would hate to stop Tecfidera but don't want to be bald either.
                              Marilyn

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