Gilenya, Day Nine

Sleep, sleep, eat, sleep, sleep, facebook, sleep, work, sleep, eat, sleep, sleep.  I'm not doing much; it feels like all I do is sleep. I have stabilized a little bit, and am sleeping 10-12 hours a night. However, if I only sleep 10 hours, I HAVE to take a nap. This is making work difficult- like I'm drowning, really. I have used up all of my sick and vacation time. I have been able to do some work from home, updating the website, responding to email, (my boss has been out of town, so there have been a significantly larger amount of email to respond to) etc., but I am afraid to do much because I have been so absent-minded, forgetful, and plain thick-headed since I started the Gilenya.

When I was on the Rebif, I generally would get 6.5-8 hours of sleep on work nights, and would "catch-up" on the weekends, sleeping 9-10 hours a night (alright some times 12 hours). So, I was used to what is was like to have fewer hours in a day to get things done because of sleep- but it wasn't every day. When you are compelled to sleep for 12 hours a day, every day, it is really hard to get things done!


Also, the absent-mindedness makes it accomplishing anything almost impossible. I have to write a list every day, all through the day of things that I need to do in order to remember to do them.  I'm not just talking about things like "buy toilet paper and milk" but things like "check to make sure you put eye make-up on both of your eyes" and "are your keys in your hand? if not please don't lock the door". Seriously. I locked myself  out of my apartment three times in one day. I had to get a spare key from the apartment management THREE TIMES IN ONE MORNING! And all I was doing was trying to get to work. Going back for the key the third time- so embarrassing. The office staff must have thought I was on drugs.   

Impressions: Even though I have been sleeping so much, I do feel better overall on the Gilenya, comparatively. I wouldn't call it a miracle-drug, because, well, I don't think my life-style has changed significantly for the better. I am jealous of people in the support groups who say that Gilenya hasn't given them any negative side effects, but I think that they are the minority.  I have asked a few questions on the support group boards, mostly how long I can expect to feel so sleepy, and people seem to understand what I am going through, as if it is a short term thing.


Side-effects: 


Fatigue: It's bad, but it isn't like my normal M.S. fatigue which can come and go and has an emotional part to it. I almost want to call it Sleepiness, because it really is just a need to sleep, and not both physical and emotional exhaustion. When I get hit with a wave of M.S. fatigue, it's like hitting a wall, but not just any wall, a wall that is 10000000 miles long and 10000000 miles high and so thick and sturdy it is impossible to even think about getting past and impossible to see through, but yet you can hear all your friends on the other side having fun and achieving their life dreams without you which makes it that much more unconquerable.


Now I realize, I've not hit the M.S. fatigue-wall at all since I started the Gilenya.  Wow! Good thing I'm writing this stuff down, or I might not have realized that!  


Short-term memory loss: Again, it's bad. But, I have learned that if I keep a notebook with me at all times, I can deal with it. The hard thing is remembering to keep the notebook with me at all times.


Headache: Has gone away!  Woo Hoo!


Lower back pain: I have been feeling this on-again and off-again.  I probably wouldn't have noticed it, but someone on one of the support groups mentioned that it felt like she had been sitting in a too-hard chair all the time, and I realized that I was feeling the same.


Vivid dreams: Crazy vivid dreams. Every night. These dreams seem very real, but they aren't nightmares. The worst one was  that my brother and sister-in-law had renamed my oldest niece "Emmalina" (but they were going to just call her "Lina" instead because "Emmalina" was too long for everyday) and I suddenly had to introduce this niece to all these people who should have known her name already (including my recently deceased grandfather) and I couldn't remember her new name. I was so frustrated with my brother when I finally woke up. (Love you, Justin!)  

Gilenya, Day Five

I was going to do this blog thing every day, but that isn't happening.  I wanted to track my daily symptoms, side effects, etc., so I would have a quantitative record of my experience to help me make the decision about staying on medications, but since I started on the Gilenya, I feel like I have slept my entire life away.


I slept for 20 hours yesterday. 20 HOURS! It wasn't continuous sleep, I did wake up to feed the cat, bathroom breaks, and water.  No meals though.  Fed the cat twice, but not myself! When I woke up this morning, I was so hungry and felt very shaky until I finished a yogurt cup. The problem is, I accidently took two pills yesterday. I was able to figure that out today by counting the pills, but I HAD counted them yesterday (seriously, this shouldn't be as hard as it felt) when I couldn't remember if I had taken my pill or not, but I obviously counted wrong.


Impressions: This sleep thing is out of control! Also, I feel like my brain can't talk to itself or I'm going crazy or something, because I can't remember anything. It's worse than being scatterbrained, which is a normal state for me, I can't remember passwords, or I've gone to go get a pen to write something down and I can't remember what I was going to write, many times a day. I forgot that I had already cooked my lunch, and made myself a second one. I'm afraid to drive anywhere.


Side Effects: Extreme fatigue, memory loss, confusion, headache, hot and cold flashes.

Day Two, or more accurately Day Three

I guess, technically, it's Day Three on Gilenya, but it's two days since the First Dose Observation, so, whatever.  I'm working my dose time from morning to afternoon. Most of the support groups have recommended taking it an hour later every day until reaching the desired dose time.  I forgot what time I took it yesterday, so I took it at 10:30 this morning. I want to take it in the evening because it definitely makes me sleepy, which is another reason that I feel like it's only been two day; I've been sleeping so much I feel like there is no possible way that it's the end of Saturday already.  

Impressions: It's weird.  I don't feel sick.  But, I don't feel altogether well. On the Rebif, I definitely felt sick about two hours after the first shot. I felt like suckity-suckity crap most days, and not just on days where I took my shot. On my shot days, sometimes, I couldn't even get out of bed. At all. Every single day for two years I woke up feeling tired, and nauseous, and emotionally worn. Since I've been off of the Rebif for about five weeks, I have gotten used to waking up feeling like a normal person, you know, grumpy because it's morning, wishing that I could press snooze a few more times, but not dreading the long (oh so very long- we work a four ten-hour day work-week) day ahead.  Yesterday and today, I felt somewhat rested when I woke up, which makes me hopeful.   However, I am sleeping a lot, like two naps to get through the day. Which, is fine for weekends, but might not be fine when I have to go back to work. There isn't anywhere to lay down for a quick nap, unless I curl up on the floor... or maybe on the Board Room table, but that would be weird. The other side effects are hard to describe. I don't feel like my body is sick, but more like my body doesn't know how to react to it's environment and... I don't know. It's just very different than either of the interferon treatments.    

Side Effects: Now to try to describe the indescribable. 


Short term memory loss: This is the first thing I noticed. But, I don't want to call it short term memory loss, because it's not a totally accurate description. When I drove myself home from the First Dose Observation, I got off at the wrong exit, but when I realized that I had the wrong exit I justified my mistake (to myself) that it was due to the confusing freeway construction in the area. As I was driving down State Street, my gas light came on, so I pulled into the nearest gas station. I slid my card through the system and hooked my car up to the tank. I turned around to look at the mountains and to let the wind blow my hair away from my face. The system beeped. I unhooked everything, got back into my car and drove about a block when the gas light turned on again. THEN I realized that I had not given my car enough time to fill at all. I didn't want to embarrass myself by going back to the same station, so I drove a little further to the next station.   


Also, I keep misplacing everything, everywhere.  It's like I don't know where things go, or I forget that I'm holding something, so it just drops and stays there until I walk by it and get confused as to why my cell phone is in the middle of my dining room floor. I haven't been anywhere but my little apartment since Thursday afternoon so it's pretty easy to fix my mistakes throughout the day. I have a feeling it will be less easy when I go back to work and mistakes are harder to fix. 


Fatigue: This has been different from my M.S. fatigue, and I don't quite know how to put my finger on how it is different. I slept for 12 hours Thursday night, had two two-hour naps on Friday, slept 14 hours last night and have had one three-hour-hour nap today. Today was the first time I took my Adderall (for fatigue) since I started the Gilenya, and I still needed a long nap to get through the rest of the day! Yikes! That is going to need to change very soon!      


Headache: Headache. Headache. Headache. It's a weird headache, not like the ones I have normally. It feels almost like my head is separated from my body like a balloon filled with heated lead... that floats... and might spill out over everything. I gave myself permission to take some Advil, (I have a strong no-Ibuprofen-because-it-gives-you-a-stomachaches personal rule) but the Advil did help with the headache. After I took it I realized the Advil had expired because it had been in my cupboard for about three years.  Oops!


Hot and cold flashes: These have been pretty significant- so cold that I can't get warm under lots of covers and a heating pad that I have stolen from my kitty's favorite sleeping spot -so hot that I start visibly sweating in a 70 degree room. It's kind of like being feverish, but without the weakness.  


Resting heart rate low:  My resting heart rate is dropping for about two hours after I take the pill.  I have a monitor and my regular resting heart rate can be anywhere from 75-80 bpm.  It has been dropping to 45-50 bpm, which is manageable. 

First impression of Gilenya: it makes me sleep a lot. Good thing I have a willing nap buddy. 

  

Gilenya, day one

Today, after six weeks of insurance runaround hell, I am starting my first dose of Gilenya. Gilenya is an oral treatment, the first for Multiple Sclerosis. I have been on Interferon treatments since 2004: Avonex then Rebif. My side effects from the Interferon were getting so bad that I was regularly missing a day of work a week, was completely down for the count on weekends. I am now completely out of vacation and sick time. I have become a recluse, because I never know what activity might bring on another spell of fatigue or nausea. My friends have been very supportive, but I still feel guilty every time I say no to something. This fall I reached a point where I didn't know how much longer I could comply with my treatment recommendations. I began to think that letting the Multiple Sclerosis win, no more treatments, and let my body accept the disability that has been hanging over my head for the last seven years.

My neurologist thought that this new treatment, Gilenya, might have fewer side effects for me, and might improve my quality of life. And briefly looking at the list of side effects I initially thought that this would be a life-changing treatment. Side effects for Gilenya include: headache, flu-like symptoms, stomach ache, vomiting, "morning sickness," back ache, fatigue (one person described the fatigue as bone-numbing for a few hours after taking the pill), coughing, diarrhea, lowered resistance to infections including chicken pox, cold sores, sinus infection, urinary track infection, kidney infection, upper respiratory infection, liver disease, all of which I dealt with while taking interferon. Then Gilenya adds some more possibilities: lowered heart rate, dizziness, hair loss, temporary blindness, high blood pressure, weight gain, increased susceptibility to fungal infections, possible fatality from herpes infection, and chronic bronchitis. I'm not so worried about the death side effects, but vainly, I am concerned about the weight gain and the hair loss... well, and all the infections. It's so hard to look at a treatment positively when it can cause so much more sickness.

Anyway, I'm going, in about an hour, to receive my first dose. Because of the lowering of heart rate that happens, it is required that I am observed for the first 6 hours after taking the pill. I was nervous and anxious before, but I think I am ready to start this new phase. Pills not needles.