MY BODY. MY CHOICE.
Stopping drug therapy
Disease modifying drugs can help stop the progression of MS to disability. They have been shown to be of great benefit by preventing relapses. They also come with their downsides, many side effects and even the risk of death.
REBECCA'S MEDICATION HISTORY
"Why I wanted to stop taking MS drugs"
When I was first diagnosed in 2015 I was very frightened. My neurologist recommended I started drug therapy right away and offered me a daily oral medication called Aubagio. After 3 months of severe stomach upsets and half of my hair falling out, I decided it was time to change.
The second course of treatment I was offered was Gilenya. I wasn't offered this initially as it has a side effect of causing skin cancer. As I'd already had 2 removed from my fair skin, it wasn't the first option for me.
I tolerated Gilenya fairly well. No stomach problems. However, along with the risk of skin cancer came the risk of PML (progressive multifocal leukoencephalopathy). Symptoms of PML are diverse and may include progressive weakness on one side of the body; clumsiness; vision problems; confusion, and changes in thinking, personality, memory and orientation. It can also be fatal.
The other thing I wasn't told about Gilenya when I was offered it (at full cost of $2500 per month) was that there is a potential for a servere rebound effect when coming off the drug.
If I knew then what I know now, I would have never started the medication. Has it kept me relapse free? Probably. But when you compare my diet and lifestyle now to what it was 3 years ago, things are dramatically different.
Rebecca doesn't advocate for people stopping medication, it's a personal choice that should be discussed with your healthcare professional.
Since ceasing all MS medication however, Rebecca has remained symptom free, not suffered a rebound or relapse and has no new lesions on a MRI scan. She will continue to monitor and look for any changes signalling a progression of the disease.
Rebecca advocates for people with any chronic illness to do whatever it takes to be well, including a whole food, plant-based diet, stress reduction, daily fitness, good sleep hygiene and medication if necessary.
STABLE DISEASE ACTIVITY
A recent MRI scan has shown that I have "stable disease activity" meaning that I still have lesions in my brain but no new activity. This is great news but I also know that MS isn't only indicated by lesions. There can be disease activity and no lesions. There can also be lesions with no symptoms. It's a crazy disease.
I discussed at length what the risks were if I stopped drug therapy. My neurologist was very diplomatic in telling me that he would advise that I continue taking the drug if it's preventing relapses but also preventing brain atrophy. He also informed me that there can be sub-clinical inflammation in the brain that cannot be picked up in an MRI, and staying on therapy could prevent this from occurring.
The neurologist that I saw was not supportive of the lifestyle approach I'm taking to managing my disease. He made no comment when I said I ate a very low saturated fat diet which was shown to help prevent progression. He smiled when I said I was going to run in the City to Bay fun run this weekend. I guess I was an anomaly for him. An outlier. One of those weirdos.
We also discussed, if I were to stop medication, how would I do this? He said there was no evidence that alternate day dosing if effective in preventing a relapse or rebound effect and that I should go off cold turkey. I decided to wean off gradually over the course of one month. Obviously if you are taking any drug therapy you should discuss coming off it with your medical professional.
SO WHERE TO NOW?
I'm finally drug free. When I think about it now I'm still nervous. I need to be even more compliant with my modified OMS protocol than ever.
After watching Conor Kerley's presentation on diet and MS, I have decided it's time to bite the bullet. He gives a wonderful summary of all the evidence so far that a diet high in saturated fat leads to disease progression and disability. Below is a summary of the life I will lead until I turn into worm food.
Eat fruits and vegetables. Mostly raw. Keep saturated fat to less than 10g per day.
Omega 3 supplementation through flaxseeds in green smoothies.
Exercise, exercise, exercise. Run. Walk. Yoga. Strength training. As often as possible.
Meditate. Try for 30 mins per day. Mindfulness meditation focusing on healing.
Sunlight and vitamin D 3 (10,000IU/day). Mindful of skin cancer!
SLEEEEP as much as my young family will let me.
FAST for remylination and stem cell regeneration by looking into the Fasting Mimicking diet by Valter Longo.
Prevent my children from developing MS through diet and vitamin D supplementation.
Do whatever it takes to be well and stay on top of the scientific research.
Medication (if required).