My biggest stressor this past week was deciding whether or not to go on conventional medicine. My neurologist Dr. Baskind & I had originally discussed options in my first appointment after my diagnosis. We discussed the IV, self injections & oral treatments. I am not a candidate for the IV treatments & I immediately knew I didn’t want to take self injections so we discussed the oral options. I couldn’t make a decision until my insurance company approved me for any of the three oral treatments. We submitted drug prior authorization forms on Dec 17 and a month later finally got a decision from the company that I was approved for Tecfidera or Aubagio.
I wanted a second opinion on my diagnosis and treatment so I asked my family doctor to refer me to the MS Clinic at St. Michael’s Hospital. I received an appointment on January 20th with Dr. Selchen. I discussed drug options with his resident & himself at the clinic and was given a different viewpoint on Tecfidera & Aubagio than my primary neurologist. I was explained the drugs are both first line defence drugs for MS so that’s why I wasn’t approved for the third, Gilenya that is available. You can only get approval for that drug if one of the first two is not effective.
There is actually so many different ways to treat MS, from disease modifying therapies to steroid treatment during an attack (which I received), to medications that just manage symptoms. I watched the video below to help me make my decision of going on Tecfidera or nothing. At 6:39 he mentions patients losing track of the purpose of the drugs and focusing on the side effects.
I don’t believe I’m losing track of the purpose of the drugs when I’m considering the risk factors of any of these drugs. I wish there was an institution that actually studied anti-inflammatory diets & supplementation. I understand how lifestyle can give MS patients a great quality of life with no side effects. That is a simple concept for me to grasp. The challenge is that no one is studying food or supplements in clinical trials to help prove that this can actually manage the disease. There are only case studies at this time. It’s frustrating that natural, holistic treatments are not even included in the decision making process. This video actually makes me mad in terms of how they portray healthy alternatives. But that’s another blog post in itself.
To make my decision between Tecfidera or no conventional drugs at this time I had to write down the pros & cons to make my own education decision and eventually it was fuelled by a whole lot of gut.
Option # 1 – Drug: Tecfidera
1. 50% effective – could slow or stop new lesions from forming
2. May have no side effects at all
1. Common side effect: diarrhea & flushing (annoying yet manageable and not long term)
2. Another common side effect could be feeling sick all the time. I would have to avoid people with colds & flus as my immune system would be changed. I don’t want to live like that. I want to boost my immune system so that it is healthy instead of living with potential constant colds.
3. I wouldn’t be able to get pregnant on the drug (I’m not pregnant!). I would need to stop the treatment if on it when I’m ready to be a mother. It also makes me hesitant to be on a drug that would cause birth defects in a future child should it still be in my system.
4. If I am able to manage the disease naturally I’ll never know if I could because I’d be on the drug as well.
5. The drug is fairly new so doctors don’t know the long term risk of being on the medication.
Option #2: No Drugs – Holistic Treatments Only
1. No side effects – Better quality of life
2. Allowing my body to heal itself
1. I may not be able to halt the progression of the disease naturally
My gut is telling me to wait. I am clearly risk adverse to the potential effectiveness & risk of side effects. There are less cons with natural holistic treatments than conventional medicine. I want to see if I can manage the disease naturally. I’ve been told I have a mild case of the disease based on my MRIs. I will not cut off Tecfidera as an option but I’d like to see how my next set of scans go and if or when I have another attack I will then try a conventional drug treatment but for now the poor effectiveness of the oral drugs & side effects cause me to choose natural treatments.
This decision is obviously the best one for me. I wanted to share my perspective but if you are an MSer who finds this blog please ensure you are doing your own research and seeing the right specialists for you and making the right decision for you. This is such a confusing disease and the treatment options are not an easy decision. Here’s to clarity and gut feelings being honoured.