September 7, 2016

lake through string

The world is divided:

  • Bottle or breast milk?
  • Cloth or disposable nappies?
  • Work or SAHM (stay at home motherhood)?
  • DMD or risk disability and death?

Full disclosure:  I was diagnosed with relapsing remitting multiple sclerosis at the beginning of 2013.  I haven’t taken any disease modifying drug for MS.  That is not to say I never will.  Just that at this point in my journey, I havent found a set of potential side effects worth the risk to me.  Your journey and disease is different and you need to get the best advice, including specialist medical advice, to treat you based on your symptoms.

All that said, we are living in interesting and fascinating times.  There is significant research into treating multiple sclerosis.  Most research is drug-related.  So, in the interests of completeness, here are some of the common ones, link to their pages and a brief summary of dosage/efficacy/potential side effects.

Note that not all patients will experience any or all side effects.  You need to seek medical advice based on your circumstances.  Further, information is current as at the date of publishing. 

Aubagio (Teriflunomide), Genzyme

  • Oral tablet, once per day.
  • Potential common side effects:  headache, diarrhea, nausea, hair thinning or loss and abnormal liver test results. 
  • Efficacy:  Phase III Clinical Trial:  Showed: Reduced Risk of Relapses:  31% reduction in relapse rate with Aubagio 14 mg versus placebo over 108 weeks.  57% patients remained relapse free with Aubagio 14 mg versus 46% with placebo over 108 weeks; Fewer new, active brain lesions:  64% of patients were free from new, active brain lesions with Aubagio 14 mg versus 39% with placebo; and Reduced risk of disability progression:  80% remained free of disability progression with Aubagio 14 mg versus placebo over 108 weeks.

Avonex, Biogen

  • Weekly injections.
  • Potential serious side effects: behavoural problems including depression, suicidal thoughts or hallucinations; liver problems; allergic reactions and skin reactions. Heart problems, blood problems, seizures, thyroid, infections.
  • Efficacy. For people who took Avonex for two years, Avonex reduced relapses by 32%. And for people who had only one flare before commencing Avonex, 44% were less likely to have another relapse at 3 years.

Betaferon, Bayer-Schering

  • Injections administered every second day.
  • EfficacyBayer-Schering published the results of an 11 year study. 69.8% of patients remained at EDSS of between 0-2.5 at 11 years. A further 18% were at EDSS of between 3.0-3.5.
  • Potential common side effects  flu like systems, injection site reactions; ery common: lymphocyte count decreased, absolute neutrophil count decreased, white blood cell count decreased, headache, abdominal pain, alanine aminotransferase increased, rash, hypertonia, myalgia, injection site reaction, flu-like symptoms, fever, asthenia, chills; Common: abnormal vision, palpitation, hypertension, dyspnoea, vomiting, aspartate aminotransferase increased, menstrual disorder, injection site necrosis, chest pain, sweating, malaise.

Copaxone, Teva

  • Options:  daily injection or three times a week injection
  • Efficacy: Most importantly for those looking to reduce their second relapse, those taking placebo experieced a second clinical event at average 238 days, while those taking Copaxone, it was an additional 386 days (45% relative risk reduction). Reduced number of GdE lesions and T2 lesion volume when compared with placebo.
  • Potential common side effects: The most common side effects are redness, pain, swelling, itching, or a lump at the site of injection, flushing, rash, shortness of breath, and chest pain.

Gilenya Fingolimod, Novartis

  • Oral capsule, once per day 
  • Efficacy A seven year study of NEDA - no evidence of disease activity - in each year for seven years, found in the first year, 27.1% of patients on Gilenya achieved NEDA-4 compared to 9.1% on placebo. Switching from placebo to Gilenya after year two doubled the proportion of patients achieving NEDA-4 (12.7% to 27.4%) in year three. Of those patients on continuous Gilenya treatment, 31.2% to 44.8% had NEDA-4-status in each of the years three to seven.
  • Potential common side effects:  headache, influenza, infection, diarrhear, back pain, abnormal liver, enzyme levels and coughing.  There are additional risks for people with the JC virus.

Lemtrada (alemtuzumab), genzyme (a Sanofi company)

  • Intravenous infusion in two treatment courses, one year apart.
  • Efficacy: reduced relapses by 49% when compared to Rebif®. The people taking LEMTRADA had nearly half as many relapses over 2 years. The rate of relapses per year with LEMTRADA was 0.26 vs. 0.52 with Rebif. 65% of people on Lemtrada were relapsed free at 2 years compared with 47% on Rebif.
  • Potential common side effects include: infusion-associated reacitons (headache, rash, nausea), lowered blood cell counts and infections. There can be serious autoimmune side effects including over or underactive thyroid gland, or blood clotting disorder.

Plegridy, Biogen

  • Sub-cutaneous injection ever two weeks.
  • Efficacy 0.26 relapses with Plegridy compared with 0.40 with a placebo and lower relapse risk of 19% with Plegridy compared with 29% with a placebo.
  • Potential common side effects include liver problems, depression or suicidal thoughts, serious allergic reactions, heart problems

Rebif, Merck Serono

  • 3 x injections each week
  • Efficacy 1.73 flare ups on average over 2 years while on Rebif compared with 2.56 flare ups on a placebo.
  • Potential common side effects include Behavioral health problems, including depression and suicidal thoughts. You may have mood problems including depression (feeling hopeless or feeling bad about yourself), and thoughts of hurting yourself or suicide Liver problems or worsening of liver problems, including liver failure. Symptoms may include nausea, loss of appetite, tiredness, dark colored urine and pale stools, yellowing of your skin or the white part of your eye, bleeding more easily than normal, confusion, and sleepiness. Other symptoms may include itching, swelling of your face, eyes, lips, tongue or throat, trouble breathing, anxiousness, feeling faint, skin rash, injection site swelling; Blood problems such as affecting bone marrow and low red and white blood cell; seizures.

Tysabri (natalizumab), Biogen

  • Monthly (28 days) infusion
  • Efficacy 80% of people treated with Tysabri had no progression of physical disability over 12 weeks; 97% of people showed no new lesions over 2 years and 70% remained relapse free over 2 years.
  • Potential side effects: TYSABRI increases your risk of getting a rare brain infection—called progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. Can also cause liver damage, allergic reaction, weakened immune system.

Tecfidera (dimethyl fumarate), 

  • Oral capsule, commencing twice daily and then adjusted
  • Efficacy: TECFIDERA has been shown to cut relapses in half, delay the progression of physical disability, and slow the development of brain lesions. During a 2-year study, TECFIDERA cut relapses in half, reducing risk of relapse by 49% compared with placebo
  • Potential common side effects include: flushing, diarrhea, nausea, abdominal pain. Patients on Tecfidera will be monitored for JC virus, and have their white blood cell count monitored prior to treatment and during to ensure levels are safe.

Haematopoietic Stem Cell Transplant (HSCT)

  • This chemotherapy treatment destroys the patient’s immune system and then uses blood and immune stem cells from the bone marrow (haematopoeitic stem cells) to help restore, or reset, the immune system following the chemotherapy. More information is available at the MS International Federation or A Closer Look at Stem Cells research into stem cells and multiple sclerosis.

Important

This page is static, but research continues. The information and links were current at time of publication but you should use this as a front door to your own research and discussions with your medical professionals. The list of possible and common side effects are summarised or copied from the manufacturers website. They are not to be considered a definitive list of potential side effects, and do not take account of interaction with other medical conditions and/or drugs.

While DMDs are available as MS treatments, there are other drugs and treatments for specific symptoms.  

Many people combine drug therapy with diet, exercise, rest and generally de-stressing your life.

New treatments are under active research and hopefully, one day, we will hear the word ‘cure’.