Valentine's Day & Gilenya, Day Twenty-Seven

I had my one-month check-up with my neurologist. (Just a few days early.) He seemed relieved that I haven't dropped dead from the Gilenya, and quite frankly, so am I.  :) I think he is concerned about all the press around the 11 deaths (or 84 deaths, depending upon your sources) related to the Gilenya. Most of the deaths were apparently unattended, and since I live with only a cat, he is concerned.  Since my heart rate is still dropping for an hour or two after I take the Gilenya, my doctor thinks it would be best to take it in the afternoon, while I am still at work. That way if I do have an emergency medical event, I will be around coworkers (who have been so supportive through all of my absences, love them!) who can help get me to medical attention, at least during the work week. He's a smart man, my doctor. I have been told, a few times in the past that, I always think up the worst possible scenario, and I have to admit, I have been letting my imagination go wild, so it was nice to have this logical (rather obvious, but I couldn't see it) solution presented to stop the "what ifs" that were floating around my mind on dark and stormy nights.    

  Unike Toonces, Myfanwy can't drive me to the emergency room.  

My blood pressure is too high, but he wants to wait a week or two to see if it drops back down to normal on it's own since it is very obvious that the Gilenya is causing it.(At my previous visit, when the MA took my blood pressure he told me it was "perfect, just like it always is- and I am annoyed that I no-longer have a medically perfect thing to brag about.)  My liver levels are scary high, and he wants me to get them checked every two weeks, and then see me in another month.  He said that if the liver levels don't get much lower soon, I will need to stop the Gilenya. 

I have been playing the elevated liver levels game for over a year now. Rebif was just as bad for my liver as Gilenya is. I have read quite a bit on how to lower liver levels with diet, and have had moderate success the last couple months of the year (2011). I kind of forgot to keep it up with the new treatment.  So, back to beets (yuck) and artichokes, asparagus, avocados, garlic, grapefruit, fennel (yum), and warm lemon water first thing, even before breakfast, in the morning. I need to investigate juicers. There are so many juice recipes for liver cleansing that I want to try.


Additional concerning information from my labs, my Lymph % is 5.2, and the normal range is 22.0-44.0, and Lymph Abs is 0.4 and the normal range is 1.2-3.4.  This has something to do with the percentage of white blood cells which are Lymph cells. There are two types of Lymph cells, T-Cells and B-Cells and they work together to protect the body from disease. With a Lymph cell percentage this low I am extremely vulnerable to disease.  My doctor said that these results are lower than he likes to see, but it is how Gilenya  works to modify the immune system so it will stop attacking the nervous system.    

Impressions: I like my doctor. I am one of his first patients on Gilenya, so we are learning about all this stuff together.  He reminded me that I need to be careful about public places, and being around sick people. He told me again that I need to stay away from public places. It was a good reminder, but I am going to really need to go to the grocery store soon. I am running out of food.


Side effects: Sleepiness, high blood pressure, slight dry cough, occasional heart fluttering that goes away if I do my yoga breathing.