I was on Copaxone until January of last year (it failed and I had a relapse). But right after my relapse I got pregnant. So I stopped treatment while pregnant. I had my first MRI since giving birth and I have 1 new lesion. My doctor wants me to start Tecfidera. I received my meds today and I am absolutely terrified. Not about the side effects, but about PML. I know it’s rare and I am JC negative, but it still freaks me out.
Has anyone been able control the disease without meds?
I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time. I am no expert on Tecfidera but that's the medication I take and it's the only one I've taken since diagnosis. I understand your concern, really I do. I however feel the risk of more lesions turning up and the issues they could cause are too risky to just go without medication at all. It's completely up to you and if you have great concern I'd definatley bring them up to your neurologist asap. Here for your review is an article discussing various MS treatment options: Click for article.
I was diagnosed in July 2015 after a brief episode of blurry vision. My eye doctor sent me for an MRI and he told me to go to a neurologist ASAP He sent me for another MRI and a spinal tap and those led to my diagnosis. I have over 30 lesions in my brain and 1 on my spine. The doctor said I have had this for quite a while and I had been lucky up until that point. I started Tecfidera right away. I am JCV positive and I still take Tecfidera. My bloodwork was checked every 3 months for the first year and now it is every 6 months. I also have an MRI every 6 months. My neurologist and my MS Specialist take great care to make sure they check my bloodwork regularly so I am not at risk for PML. From what I understand, the risk for PML is only if your white blood cell count and lymphocyte count are too low, which is why the doctors do regular bloodwork (don't quote me on that - ask your doctor to be sure). The good news is that while on Tecfidera I have not had a relapse, I have no new lesions, I have no active lesions, my bloodwork is normal and I have no significant MS symptoms. I work full time, I travel, etc. Tecfidera has been very effective for me and I can't imagine not taking it. For me, I am pro-meds due to the results it has brought me.
I have been med free for 2 years. I was diagnosed 3 years ago. My attitude towards meds, are much different than others. I believe if you are on a med, and have no relapses or active lesions, the only thing you know for certain, is that you have had no relapses or active lesions. When I first quit Copaxone, my plan was to go a year without meds and see how it went. What I learned was, I felt much better. I also learned stress is a trigger for me. I would get more stressed about the injections, than the disease itself. My first MRI after stopping, showed no progression and no active lesions. My second showed the same. This route certainly isn't popular, but for me, it's my choice. There are risks either way. Do your research and decide what's best for you.
I am on Tysabri and have been on it for 6-7 years. It also has the risk for PML. I too am JCV negative. I haven't had a relapse or PML. I recommend medication because it slows down the progression of the disease. I have known people that didn't take meds and regretted it when they got older.
The other thing is they monitor you very closely. Don't be concerned that if you feel something that worries you to let them know because trust me they don't want you to get PML either. If you really can't get past that there are other medications. Talk to your doctor about other options.