Disclaimer: This blog is composed of my own experience and thoughts, dealing with my own RRMS. What works for me, may not necessarily work for you. Discuss your treatment options with your health care professionals. If you don’t feel heard, or understood, you have the right to seek out a new doctor. This is your Health, your MS, and your Journey. You have the right to every aid to help you find the best medication for you.
My buddies on MS Healthline have continued to spark inspiration for subjects to my blog. This was a suggestion from Murad: “I Think that should be on your blog, a ‘prep to starting a new med.’ This is my only MS Med ever.”
His suggestion got me thinking. When you go to a neurologists office, you often gets some pamphlets and promotional material, detailing your drug options. When I was diagnosed in 2004, I was given a DVD and some literature from Copaxone and one of the interferon drugs and told to choose one. I didn’t know where else to go for information. After watching the enclosed promotional DVDS, I chose copaxone, because I wanted to avoid the flu like side effects of the interferon medication, and I liked the idea of a subcutaneous shot, rather than intramuscular one.
I had two options to choose from. Now there are how many options? Here’s a list from the National MS Society of the MS treatments available. There are 23 medications on the list, but unfortunately there isn’t a breakdown of medications based upon Multiple Sclerosis type- RRMS; SPMS; PPMS. Click here for a list of medications for SPMS and PPMS.
So someone going into a neurologist’s office today faces quite a more complicated dilemma than I did. Sometimes your neurologist will narrow it down. But the question also comes up, why is my neuro recommending these specific medications for me? What makes these four a better choice for me? Is it the lack of side effects, are these most effective for preventing relapses, or are these the companies that send him/her free pens? Is this company sponsoring her research? Is this medication really right for me? (If you have these questions, don’t be afraid to ask your neurologist or Specialist for their reasoning behind choosing a certain Disease Modifying Therapy. You deserve that explanation.)
Or is it because I am required by my insurance to fail a lower efficacy medication, have a relapse and possibly accrue irreversible spinal or brain damage before I can use a high efficacy medication?
Neurologists and MS specialists look forward to a future when genetic testing will be able to reveal hints and clues as to which medication does really have the best chance of slowing or stopping your disease progression; but we don’t have that yet.
Right now neurologists are going off experience: what has worked for their other patients, what does your physical examination indicate your level of disability is, how many lesions do you have in your brain and spinal cord. Some neurologists err on the side of caution and tend to prescribe a conservative treatment, such as a shot or oral medication. Some neurologists or MS Specialists are of the opinon that they should begin aggressive treatment with a high effectageous medication right out the door. This is to give you the best chance they feel they can give you to not have any more relapses, disease progression, or reversible or irreversible disability.
But what are you most comfortable with? Are you wanting to start a high efficacy treatment, or are you more concerned about side effects? It can be an overwhelming experience, and Lord knows you don’t need to be overwhelmed right now. You may have been just told you have MS, or you may have just been told you have breakthrough disease activity, if you are already on a treatment. This is already a stressful time and you need all the help and support that can be offered.
So this is what this is; some resources to help give you the information you need in a way that isn’t stressful. My best advice is to take a breath. Its going to be ok. Don’t let the stress of choosing something new overwhelm you. Ask for help from God, your family, your trusted friends, or neurologist, whoever can make you feel supported through all of this.
I started Ocrevus in the fall of 2018 after I had a relapse that left a lesion on my brain stem. I had been off all DMTs for 10 years, and I had been pretty protected for five of those years through pregnancy and breastfeeding my kids. I was lucky that that worked for me. I waited to long to start a treatment because I was so nervous and scared of side effects. I was slated to choose my medication, and everytime I went to look at all the new options there were since I had become pregnant, I got cognitively overwhelmed. My neurologist had suggested Tecfidera. I was so weary of the side effects. Concerns over keeping my healthy kidneys and liver healthy, had made me never try an interferon medication. I didn’t know that Tecfidera looked much better.
You see, there is a reason why all these side effects looked so scary to me. Not all of them may be common, some very unlikely. When my diagnosing neurologist told me he was going to give me an MRI just to check for MS, even though he was sure I didn’t have it, but sometimes these kinds of accidents can cause an MS relapse… Then I read my MRI report while walking down the hospital hallway. I had multiple lesions in my brain and one on my cervical spine. The report said these findings indicated a strong likelyhood of an MS diagnosis.
So I don’t trust very many odds. If lighting struck me once, what is really keeping it from striking again. That is the fear of side effects for me. Even if a side effect seemed unlikely, my first neurologist had told me, he didn’t think I had MS. His effort to assuage my fears, ended up making me fear the possibility of new, unexpected dangers.
Fast forward to my major relapse, fifteen years after my diagnosis, and after a ten year break from Disease Modifying Therapy. I was managing my MS naturally, through diet, stress management, and exercise. I took vitamin D daily, and pregnancy and breastfeeding my two children had kept my MS in check, it seemed. However, when I weaned my son at 18 months, I started gradually having more and more bad days. While trying to decide a new medication I was overwhelmed by factors of stress in my life. I had increasing numbness in my limbs, and it became harder and harder to walk. It was time for me to again see my neurologist at my prescheduled appointment to choose a new medication.
I went into the appointment expecting to be prescribed Tecfidera, an oral medication. I had completed my MRI months ago, before the encroaching numbness started. I was nervous about the side effects of the medication, but I wanted to follow my MS Specialist’s advice. She entered the appointment saying my MRI looked good. I sat nervously in the chair, trying to protect myself and her, from the new information that I was not good. I was not well. Something had happened. My husband was there, and encouraged me to tell her the truth. I had taken some obscenely long amount of time to complete the 25 step walking test. Our plan changed, and she said I needed a stronger treatment. She recommended Ocrevus.
She wanted to bump me up from possibly taking a second tier drug to a third tier. This was catastrophic to me. I had just come around to the idea of a baby step up in the tier system of MS medication. Now I was at the top, third tier??? I felt I had failed. I had messed up so bad by relapsing that this was were I was? I had to take this much of what I perceived as a risk. My husband waited in the car while I filled out the Ocrevus Consent form. I could sense my nurse’s discomfort and compassion when he came in as I fought back the tears while I read the consent I was signing to start the application process for Ocrevus. I lost the battle, and cried while I signed the form. I had gotten the double bad news that the regenerative medication trial I was hoping to sign up for was already filled. (Anti- Lingo 1) Just living that memory here makes my ribs spasm and tighten with the discomfort of the memory. Luckily, things have gotten a lot better.
I waited a month to start Ocrevus. I won’t waste time with the details right now. I was scared. I found Damian Washington’s Vlog about getting his Ocrevus infusion. I got the infusion and felt that magic from the steroid premed. It took my MS symptoms and walking problems away for four days. I had never had a steroid treatment before, or any kind of steroid, except an allergy medication. I felt amazing. This amazing resurrection faded, and I returned to where the disabling relapse had left me, with prickly numb toes, feet and legs. However, this feeling of the possibility of feeling better boosted my desire to improve my lot. I started physical therapy and occupational therapy. I found help feeling the ground through barefoot shoes. I just kept going, a step at a time.
My opinion of DMTs changed because I found one that worked for me. It has worked for me in the long term as well. I’m walking better, I started another clinical trial for a different regenerative medicine called elezanumab. I took that leap of faith, that was very difficult to take. I fully expected that I might fall into the abyss of side effects, but I didn’t. I feel like I’m insured now from one of those horrible relapses that was always lurking in the shadows. That has brought a lightness. (This is my own experience, but everyone with MS is different. It’s still best practice to have a discussion with your neurologist or MS Specialist to determine the right medication for you.)
There are enough options and you most likely will be safer, than you will be if you leave this disease unchecked. I did that and it worked well for a long time. I was lucky, and I tried really, really hard. I didn’t often cheat on my MS diet, I did the things I was supposed to. However I went through the changes of fluctuating hormones after a long period of two pregnancies and breastfeeding. Life got to be a bit too much for me to handle. I felt my energy go down, slowly, as I was no longer receiving the benefits I enjoyed while pregnant and breastfeeding. I wasn’t sleeping well. I stressed, I relapsed. It took out a chunk of my brainstem. Even though I have improved over the last two and a half years, it’s still a struggle that I have to deal with every day.
My partial numbness in my limbs hasn’t gone away, and now I also have it in my head, scalp and face. But I am much better off than I was before starting Ocrevus. This past year of the pandemic, I have spent away from California, and my MS Specialist. I am getting a new MRI when I return to California in July. I am staying the course the best I can, and hoping that the facial numbness is a result of my brain stem lesion. I had a teledoc appointment with my MS specialist, who confirmed that this is completely possible, but we need a new MRI, to see how my brain and spinal column are really doing.
It’s a constant process, and I wish you the best of luck through your own journey. I’m working on compiling a list of MS medications, their side effects, but I fear it may be beyond me, and I’ll be taking on too much. Yet there is a real need for a comprehensive comparison that works for our Cog Fog, that helps us make this all important decision of treating our MS. I appeal to the MS universe, and the people reading this blog that have a greater abilities than I with my MS medication. What would help me, and I think would help many out there, would be a chart of medications, comparing clinical data on efficacy and side effects, and helping MS patients make one of the most important decisions they are facing.
What is your experience? What has helped you in your selection of an MS medication? Please comment below and share with others. You never know who may be helped by the information and experience you have.
Thank you for reading my thoughts. I wish you a healthy #worldmsday and the ability to relax and take charge of your MS in a way that is comfortable and effective for you. Please like, comment, and subscribe if this content is helpful to you.
May God be with you till we meet again.