Mod­i­fy­ing the Dis­ease Course

 

Hawaii

 

 

May 11, 2016:

In 2013, I stopped taking Tysabri and tried the oral pill, Tecfidera.  I took Tecfidera for only 4 months as I was having horrible side effects from it.  It was the worst decision that I’ve ever made to stop the Tysabri infusions and take the Tecfidera oral pill.  It completely messed up my stomach; and, it took years to finally get past all of the stomach problems it created.  After stopping the Tecfidera, I immediately went back to getting Tysabri monthly infusions.

2016 is turning out to be a wonderful year for new MS therapies.  Currently, I am looking at stem cells.  Unfortunately, there is not a stem cell study taking place in Houston as of now; but, there is a stem cell study in Chicago that Dr. Richard Burt with Northwestern University is conducting.  Keeping my fingers crossed that I’ll be found eligible to go to Chicago for a formal evaluation.  Will definitely provide updates on how this is going.

Cheers,

Kelly

 

October 13, 2012:

There are several therapies, or treatments, for MS.

The fol­low­ing agents can reduce dis­ease activ­ity and dis­ease pro­gres­sion for many indi­vid­u­als with relaps­ing forms of MS, including those with sec­ondary pro­gres­sive dis­ease who con­tinue to have relapses.  When one is initially diagnosed with MS, they are usually started on one of the following therapies:

FDA-Approved Disease-Modifying Agents
Avonex (inter­feron beta-1a)
Betaseron (inter­feron beta-1b)
Copax­one (glati­ramer acetate)
Extavia (inter­feron beta-1b)
Gilenya (fin­golimod)  
Novantrone (mitox­antrone)
Rebif (inter­feron beta-1a)
Tysabri (natal­izumab)

I was diagnosed with MS in 2005 and immediately started taking Copaxone, which is a daily shot.  The only symptoms I had while on Copaxone were welps at the injection sites.  I would put ice on the site after the injection to help with the swelling.

When it was determined that the Copaxone was not helping like it had been, I was put on Tysabri, which is an infusion once a month.  I am currently on the Tysabri, and have been taking the Tysabri every month for eight years.

There is constant research being done to find a cure for MS, but also for other therapies.

Although at this time there is no cure for multiple sclerosis, there are many effective ways of managing the disease.  There are now two medications in pill form to treat multiple sclerosis, and one waiting for approval.

The first oral drug, Gilenya, was approved September 2010.

The newest therapy that has been approved by the U.S. Food and Drug Administration is teriflunomide once-daily pills (Aubagio,® Genzyme, a Sanofi company) to treat relapsing forms of MS.  This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis.  The therapy became available for prescription in the U.S. in September 2012.

The most recent oral treatment being studied is Dimethyl fumarate, also known as BG-12.  If approved, BG-12 could be another weapon to treat MS.  Based on the results of two studies published in The New England Journal of Medicine, experts believe this is likely.

Once diag­nosed with MS, you and your neu­rol­o­gist can focus on find­ing the best ther­apy for you.

Wishing you the best,
Kelly

 

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Blackstone, Margaret.  The First Year – Multiple Sclerosis:  An Essential Guide for the Newly Diagnosed.   New York: Marlowe & Company, 2003.

Nichols, Judith Lynn.  Women Living with Multiple Sclerosis.  California:  Hunter House, Inc. Publishers, 1999.

The National Multiple Sclerosis Society: Lone Star.  Texas.

4 Responses to Mod­i­fy­ing the Dis­ease Course

    • admin says:

      This is awesome! I recently heard about Dr. Wahls, and her story is really incredible and so encouraging. When I was diagnosed with MS, I had no idea how much one’s diet played a part in a person’s health. I now know how important it is to eat properly in order to stay healthy. Needless to say, I have made a lot of changes in my diet and I am feeling so much better.

      Thank you so very much for taking the time to share with us your journey and reminding everyone how important it is to eat healthy.

      Wishing you the best,
      Kelly

    • Michele says:

      When my doctor intiailly told me last November that Copaxone wasn’t doing enough to treat my MS and that he wanted me to go on Tysabri or Gilenya I was very tempted to go on Gilenya. Especially when I found out I have the JC virus (this virus increases your chances of getting PML on Tysabri). The main reason why I chose Tysabri last December was because Gilenya had only been on the market for a month or two and I was scared on it being such a new drug and that the people in the trials had only been on it for a year or two. I decided to go on Tysabri but for only a year and then I would change treatments. Next week I will have my 12th Tysabri influsion and I plan for it to be my last as I just don’t want to take the risk of getting PML. I plan to start on Gilenya sometime in 2012 so I don’t know much about it effecting people being active but I will repost your question and maybe someone else may have some experience. From the comments and feedback I have seen about Gilenya it appears people mainly complain of headaches at the begining but do better as they are on it longer.Thanks for the comment and question!

      • admin says:

        Thank you so much for your thoughts! I’m curious how you do on Gilenya. Please keep me posted!

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