For all of you non-frequenters of medications for autoimmune diseases, and I assume some cancer patients, a DMT is a “Disease Modifying Therapy”. Your “typical” person with MS get a medication and they either go through a few at the beginning of diagnosis and find one that works for them for decades or get lucky and the first medication they are on works for them in all the ways. No severe side effects, easy version of taking it, no new lesions, slowed progression or no progression of disease at the RRMS stage.
My experience is not like that at all. I have a friend who took Tysabri (my first med) and was so excited for me to start it because it gave her energy and she felt better, unless she over did her physical activity. I was on Tysabri for 2 years, I had new lesions with every MRI, I had a neurologist that refused to listen to me or answer any of my questions so I found a new neurologist. I wish I had advocated for myself sooner though, I didn’t really understand that at the time. It took the doctor telling me to “shut up” when I asked a question for me to be like “nope, this is not ok”. While on Tysabri, it wasn’t just the new lesions, apparently I had optic neuritis during that time that went untreated because my future doctor diagnosed it and then informed me you can not treat it if it’s no longer active. Tysabri caused worsening nerve pain and all the joints in my toes felt broken every night. Everything in my body was screaming at me that I was getting worse but I didn’t think I had a right to speak up for myself, I am not a brain doctor, despite how much I like to talk about brains.
On my birthday in 2016 I met my new neurologist at a university, a doctor, professor and head of the latest research. I was so hopeful that he could help me. I was told by multiple doctors that it was very “rare” to have break through lesions while on Tysabri so my MS must be “aggressive” not “progressive though, It would take so many more appointments and medication changes for them to note in my chart that I am “progressing”, wording is very important in your chart. If they label you as secondary progressive, there are no more medication options for you unless you have new lesions. So I started IV Rituxan, it was supposed to be amazing, it was only one infusion every 6 months instead of every month so what was there to loose, Tysabri wasn’t doing anything. I took it until my insurance changed and they no longer approved the off label use of this drug for MS. Did I notice a change? Nope, other than I didn’t have any new lesions per their scans I didn’t feel any better. I didn’t feel a plateau of symptoms, I still felt like I was on a slow downhill slide.
Insurance required me to change to Ocrevus, another infusion. Actually it’s very much like Rituxan though it uses human antibodies instead of mouse ones. I always said my body must like the mouse ones better. On Ocrevus you get two half doses 3 months apart if I remember and then your 3 dose is a full dose. All three of my doses had to be stopped for allergic reactions. The 3rd one was stopped something like 5 times to push benadryl, steroids, IV fluids and wait for the rash and itching to stop. So even though the doctor “never had a patient with an allergic reaction to Ocrevus” he now did and it was time to look for my 4th DMT.
At this point I had tried 3 of the 5 infusions, the other 2 being very high risk for cancer, so we looked at pills. The doctor told me what he was thinking about and gave me time to go home and research my options before we met again. I chose Vumerity, it was supposed to have less GI issues than it’s counter part and I already have GI issues so I was like that’s fine let’s try. I was on the drug for about 3 months before I stopped the med because my GI symptoms were getting worse. Then I ended up in the hospital with an angry gallbladder that needed to be removed. We decided to wait on restarting the meds until I was more healed from the surgery. 20 days later I was back in the ER with acute pancreatitis and severe infection from gallbladder removal.
So here we are, I can’t take this med anymore because it’ll be 6 months before I heal from acute pancreatitis so we started looking at options for number 5. At this point my EDSS score (the score of 1-10 giving a number to how disabled a person is) is 6.5. At this point I have lost faith that any medication will actually help me because everything in my body is getting worse and I have now also been diagnosed with fibromyalgia. So I do my research, knowing pills are not an option.
I research the 2 infusions I haven’t had yet again, nope they’re a no go. I look at all the injectables. There are quite a few so why should it matter right? Just pick one. I get the “rare” and weird side effects so I don’t have that luxury. Knowing a high efficacy infusion did not stop continued lesions and an infusion that out of more than 100 patients had never had an allergy until me I have to see what I am comfortable risking. More than one option have high rates of causing additional autoimmune diseases, I do not need more problems, I am looking for something that will keep me out of a wheelchair as long as possible. I already use a service dog and a cane and sometimes a walker. One of the options had a high risk of cancer, one has been on the market so long that it has a low efficacy unless you have super chill MS.
So I spoke with my neurologist’s NP, gave her all the information she said injectables would be best and told me about my options. Since I already knew this was what would happen I had all my notes on my various options. My hesitation with my choice, which she also felt was the best choice was that it was in the same family of medications as Rituxan and Ocrevus and I would be at my house if I have an allergic reaction. Though the chances are lower since it’s a monthly injection and a lower dose of the medication. I have many tattoos and they take my blood often at the hospital and doctors offices. I am not afraid of needles but I am most definitely not looking forward to giving myself a shot. However, the doctor approved of Kesimpta and 11 vials of blood have been taken from me to check all the things that need to be checked prior to them signing off on the medication to come. The process has started, I can only how it will slow the progression because you cannot typically get back what you have already lost. Even if am able to rebuild the muscle that has atrophied, my brain cannot regrow, where there is no more reserve it cannot forge new pathways. So I treat all the symptoms with various meds and just wait and see what will come.