Started Tecfidera

Well, yesterday I started my new medication. I will be on a gradual increase of dosage so my body can get used to the meds. I have started with one dose in the morning of 120mg and by the end of week 4 I will be on 2 doses of 240 mg, one in the am and one in the pm. My body didn't wait to show side effects. 4 hours of taking my first dose I experienced major flushing and redness of my face. My ears burned like I have never felt before. It was crazy! Today it did the same thing. Luckily, it last for about an hour and I return to normal. This side effect is the most common for those starting the medication and will hopefully decrease over time. No guarantees, but here's to hoping. I am praying and crossing my fingers that all will go well with this new medication because I sure do miss my other. This Christmas holiday has been pretty stress free and I am enjoying my new house and my old Christmas decorations in my new space. Shopping is done and so I get to sit back and hopefully enjoy this new ride with new medication. Merry Christmas!!

Time for New Medicine

10 months since my last post, but there was nothing dramatically changing in my health. To me, this is GREAT news! About a month ago, I received a letter in the mail from my neurologist, Dr. Thomas Diesing. It informed me that he was taking a position at the University of Nebraska Medical Center (UNMC) as the medical director of all hospital neurology services. Good for him! Unfortunately, this means he will no longer be taking patients and that I would need to find a new neurologist. I could stay at the same clinic, or he suggested Dr. Zabad at the MS clinic at UNMC. Before the letter, we had already heard great things about Dr. Zabad and wanted to get into the MS clinic anyway, but enjoyed Dr. Diesing. Anyway, Tyson knew some people at the clinic since he used to work at UNMC and was able to make me an appointment the following week to get established. Dr. Zabad is awesome and so intelligent when it come to multiple sclerosis. Since my last MRI was 3 1/2 years ago, we both thought it was time to get an MRI done to see how things are progressing, if at all. During our appointment, she reviewed my previous scans and it appears that there were two lesions on my spine that I was not aware of. This disheartened me a little bit and made me worry...which is what I do best! The MRI that was ordered was a brain, cervical, and thoracic scan (brain and spinal cord). This test takes 2 1/2 hours! YIKES! I was nervous, not for the scan itself because I have had MRI's before, but to be able to lay on that table for that long. Just getting a scan of my brain is long enough. I took a Xanax before the scan to help relax me. I should have taken two, but you live and learn, right? I was able to sleep some but every 7 minutes or so, the radiologist chimed in asking if I was okay and that he was moving on to the next scan. I would have done good during the whole thing except a week prior I started developing this cough. The first half of the scan went great, but the second half I had to click the button so that he could pause the scan so I could cough. Annoying!! I was taken out of the tube to put contrast into my veins then put right in. I had asked if I could sit up adjust and he advised against it because they want the comparisons to be as exact as they can. Talk about a sigh of disappointment that may have escaped my mouth! Back in I go, and about 20 minutes before it was over I was so uncomfortable I couldn't help but slightly move so that I wasn't in pain. I tried so hard to stay still but it was so hard!! Finally, it was over. As I sat up, my head felt so weird and I had to just sit there for a few minutes and compose myself. I walked back to the dressing room and looked it the mirror. Yikes! I was a site for sore eyes! :) 10 minutes passed and I looked normal again. That was the weirdest thing ever. I have an appointment on Oct. 15th to review my scans. Last week, I got a call from Dr. Zabad saying that there was been some changes to my brain and more inflammation in my spine. That is all she said, except for the fact that I will have to change medication. I am not sure of the extent of the "changes" and so I have been worried what was going to happen to me. I have been feeling so good and doing so great that I felt that no changes were going to appear. I love my current medication, Gilenya, because I don't have any side effects from it, and IT'S A PILL! Before my MRI, my doctor had given me some reading material in case we had to change drugs. She must have known or something! Well, I had three choices to choose from. The first choice was Tysabri, which is a monthly infusion drug, but this drug has the requirement to test the patient's blood before beginning therapy to see if a certain virus is present. Unfortunately, I have the virus so if I were to start this drug the chances of complications could significantly rise. So, my two choices are Copaxone and Tecfidera. Copaxone has been around for at least 12 years because that was one of the drugs of choice when I was first diagnosed. It is a 3 x week subcutaneous shot. Boo! Tecfidera is a BID (twice a day) pill. So...I'm not sure which one I am going to choose but have a few more days to ponder on it. One thing I have to remember is to live in the present, not in the future! I have been so worried about what is going to happen to me now that I know about the lesions on my spine. Will it effect me soon? I want to play sports with my daughter, play at the park, all these things that require movement and I might not be able to.....aaahh! I had to take a step back and remember enjoy today not tomorrow!