I hit my 4 year MS diagnosis anniversary earlier this month. I can't believe it's been just 4 years as it seems like I've had MS forever. I am so blessed, and grateful, in the fact that I haven't been affected like others with this disease. I still have all of my mental faculties and can walk relatively well. I find that I stumble into things, but that's okay because I'm still walking. I tend to veer to one side, but again that's okay. I've fallen for no reason, but not often. I still work full time and even though it takes longer to get the job done, it still gets done. I've even started doing Richard's books with his business on the side. I am truly blessed and I really do recognize that fact!
The Tecfidera medication is going well. My neurologist (Dr. Hull) has taken me off of Gabapentin, due to the fact that I've maxed out on the dosage, and switched me to Gralise which is Gabapentin in a time release dosage and the dosage is only 1,800 compared to 3,600 that I was on. Dr. Hull has prescribed Ampyra to aide with walking. I'm still on Tussinex for my coughing, but I get that from my regular doctor, which seems to be working. I've added Biotin to my medicine list as it is suppose to help with hair loss (which is a side effect of Tecfidera), B Complex as I'm low on Vitamin B, and 10,000 IUs Vitamin D2 daily..
Recently there was a report of a patient, who was on Tecfidera, who died from PML (Progressive multifocal leukoencephalopathy), which is caused by the JCV (John Cunningham Virus) and I asked Dr. Hull about this during my December 2014 visit. She advised that patients should always have routine blood work every 6 months to make sure they're not low on their white blood cells (WBC) and that the patient who died from PML should not have been on Tecfidera as their WBC were low for way too long. She went on to say that if one of her patients' blood tests come back low, she repeats in a month or two and a repeat low WBC test will result in the patient being immediately taken off Tecfidera. I asked her about being tested for JCV and she said we could definitely do that at no cost as the National MS Society covers the expense. I just received my results yesterday and apparently I am JCV positive, which means I can never use Tysabri (which is a once a month infusion). JCV is very common on the human population, infecting 70 to 90 percent of people. JCV can cause PML in people with immunodeficiency...which I have as a result of Tecfidera (or any MS medication for that matter).
During my December 2014 doctor's appointment, I asked Dr. Hull about the need to repeat my MRIs on an annual basis. She advised that becuse my MS is stable, we can actually stretch that out to every 2 years. This made me incredibly happy at the time, however now I'm thinking that was a mistake on my part as I won't know if the Tecfidera is working until next January.
I guess that's my update for now.
Sources:
http://en.wikipedia.org/wiki/JC_virus
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