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Week 2 update

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    Week 2 update

    I have been home a week now (week 1 being the Lemtrada week) and have been through a lot of changes during the week.

    I posted that update to the blog (click on 69mustang, the blog is listed as my last name).

    I also posted a page on the Protocol, Side Effects we experienced and side effects we did not. That is in the "Pages" section as its own document to put the information in an easy to access spot.

    I know this treatment is going to turn back the clock on my main symptom- fatigue (i can deal with cog & pain- I just really want my energy back). I am already thinking of things I want to do- and my mind had pretty much turned that faucet off in the past years- because I knew what I couldn't do, my limits. So the fact that I am 'free thinking' about going and doing is a monumental mental shift that I think my brain is making as it senses my body is less restrained!

    I just need to get through my own self-imposed sequester to avoid catching 'bugs'- I know I will be off to the races soon.

    I plan to update the blog weekly for now- probably on Thursday or Friday. My first lab draw is in two weeks and I will definitely post those results.

    Two thoughts come to my mind. First thought is... Are you seeing a return of balance and gait? Second is ... does the Lemtrada treatment halt all of the types / forms of MS ? I wonder these things because there are theories around that Progressive MS is a different disease than Relapsing MS. I guess time will tell. Keep posting. Good luck.


      Originally posted by JerryD View Post
      Are you seeing a return of balance and gait? Does the Lemtrada treatment halt all of the types / forms of MS ?
      My main MS problems are fatigue, cognitive/memory problems, & pain. I have minor balance issues and minimal gait issues- tripping mainly, worse with fatigue.

      Since my balance and gait problems are so minimal (I was diagnosed 11 years ago, had it for many years prior) it is hard to say they are improved yet. I am also home bound for now, until my immune system recovers so I am walking around a small area. I would say there may have been some improvement as I have had to stand with my eyes closed recently without issue. Ava (other patient on the blog) has more motor issues than I have. I will ask her if she is seeing improvement.

      To answer your second question you need to understand how Lemtrada works and how the damage is done in MS (I will assume you know the latter, but let me know if you need help there).

      For the full research on how Lemtrada works- there is an overview of the clinical trials on the blog- Under March- look for "EU Summation of Lemtrada Clinical Trials up to June 2013" This is a 116 page document and quite extensive, intended for a medical audience.

      To sum up briefly- In MS your white blood cells (WBCs) are attacking your CNS (brain and spinal cord). Lemtrada basically kills off your circulating WBCs- specifically your B and T cells.

      Scientists believe Lemtrada first depletes and then repopulates these B & T cells. Research suggests that Lemtrada alters the number, proportions and properties of some WBC subsets on repopulation.

      The purpose of B&T cells, among other responsibilities is to remember what to do- they are your immune memory cells. This is helpful for instance in chicken pox, once you get it and get over it, your body remembers how to respond to a second attack- so rarely do people get chicken pox a second time. Your immune system is remembering and storing information on how to respond to all the viruses, bacteria, fungi and other pathogens you have been exposed to all your life.

      Unfortunately in MS the immune system is ‘remembering’ to attack your CNS. By killing those memory B & T cells the hope is that when your body repopulates them from your bone marrow they will forget their edict to attack your CNS.

      The answer to your question- how will Lemtrada work in various types of MS disease? The answer is unique as each patient’s symptoms. First of all the hope is to stop future attacks to myelin by your immune system. The fewer symptoms you have acquired over the years, the better.

      There were signs that Lemtrada might reverse some of the losses the MS patient has experienced. Genzyme chose to remove this from the official request for approval- the data was there to possibly support this but to pave the way for smoother approval in the EU Genzyme officially dropped this claim from their request for approval.

      In the meantime new research is being done to look at what can be done to regrow myelin. Some preliminary studies have shown the potential for oligodendrocyte induction (turn on the oligo cells responsible for making myelin) with certain drugs. Specifically Clemastine 1.34mg 3 in am and 3 in pm. This is OTC. SSRIs (Selective Serotonin Reuptake Inhibitors) have also been shown in some small studies to also have an effect on the oligos- specifically Prozac and Lexapro were studied. Drugs in this class are only available by Rx.

      There is another avenue to explore to treat the “oxidative stress” associated with MS. This is a completely different way to treat MS with “complimentary medicine” involving vitamin supplementation. These studies are also small. My plan is to upload these studies to the blog for all to read.

      Please investigate these two last topics and speak with neurologist about their use in your MS treatment. I can list the medications I am taking along with vitamin supplements but it would be best to involve your doctor as I cannot know the specifics of your case.

      I hope this is helpful to you. You are always welcome to email me personally or look to the blog for these answers.


        Thanks for posting! Have there been any studies for progressive types of MS?
        Dx 07/13


          Thank you for the feedback. I was thinking the same as Jerry so appreciate that you took the time to respond.

          Good luck!


            For relapsing MS Melatonin has been under serious study in Europe. You can read more about it, including a detailed journal article on my Lemtrada blog

            Blog address available by clicking on '69 mustang' then is listed as my last name.

            If you can't find it send me an email directly & I will guide you there

            Once on the blog look to the right under the 'Pages' section for info on Melatonin.

            I will put other adjunctive therapy information there in the coming weeks.