Gilenya, Week Eleven

For the last three weekends, including today, I have woken up on Friday morning feeling a bit feverish and other sickish symptoms like a tickle in my throat and a general  feeling of yuckiness. Mostly, I have recovered by Monday morning. I don't know how I have somehow managed to avoid letting these episodes of sickness turn into days and weeks of battling infection, but I really hope this means that my body is beginning to adjust to the lowered immunity.  But I am also just waiting for the shoe to drop. 


I have been working through these last few weekends on the Annual Report. I have everything formatted, I still need to collect the data for all the charts, and I need to collect a few more photos. I've been waiting for it to snow, so the properties would be more attractive, with snow all piled up on the bare branches, but it never snowed. So now I'm waiting for the trees to bud, and the grass to get green, so I will probably be running around on the last day trying to capture the perfect photo.  I will also probably completely change format around before I'm done.  That's kind of what I do. Inspiration only comes to me when the pressure is on. 


Because I haven't been feeling well on the weekends, and because I have been working from home, I have let my apartment go again.  I was doing so well, because I wasn't fighting the M.S. fatigue I could clean a little bit every day without being fearful that I would wear myself out before I could get any work done. I almost feel like the Rebif-me is hiding in the shadows, just waiting for me to let my guard down so she can slip back inside me and slow me down.  


I had my required-to-continue-with-Gilenya three-month eye appointment this week. It was good news. Even though I am having some light sensitivity, and occasional blurry vision, I don't have any signs of macular edema. And, even better news, my eyesight actually improved a bit over the last year! The doctor said it was most likely because I haven't been wearing any corrective lenses, because I lost my glasses last summer, and so my eyes were forced to stop being lazy and worked harder to see. 

This week I also started three blood pressure meds, through my primary care doctor. The first one didn't work after five days, so she started me on two additional.  That combination seems to have worked, and my blood pressure was normal (118/79 )yesterday. Woo hoo!  My primary care doctor was also able to prescribe a cream for an infection that I have on my face: Angular Chelitis. So hopefully that embarrassing thing will go away soon. 

Impressions: I am anxious about my doing my best to make sure I can stay on Gilenya, The thought of going back to Rebif, scares and depresses me, even though I know that the Rebif worked, and slowed my suddenly fast progression. Doing everything I can, means drinking water, eating artichokes and asparagus, and keeping my spirits up.  


Side effects: sleepiness and fatigue, the tickle-in-the-back-of-the-throat cough, spasicity, muscle twitching, sensitivity to light, vivid dreams, lowered immunity, infection, high liver levels (but they are getting better), high blood pressure.

St. Patrick's Day & Gilenya Week Eight

I love St. Patrick's Day! Erin go Bragh, everyone!  I haven't really celebrated this year, but I did call my grandma for a chat, and talking to her always makes me happy.  


Good news! I had my final dentist appointment on Friday, so the root-canal-re-do is finally done. Bad news, they took my blood pressure, and it's still very high, 163 over the bottom number, which I can  never remember. I think I forget the bottom one because I kind of panic and lose focus when I hear how high the top number is. I don't know why I'm so bothered by the high blood pressure, because it is definitely a side effect of the Gilenya.  (Speaking of being bothered, I can't even think that word without clicking over to Youtube to watch a little Catherine Tate and David Tennant. It's not Irish, but I'm going to call it my Happy St. Patrick's Day moment.) 


Anyway, I guess I need to call my neuro on Monday and see what he wants me to do. My next appointment with him is in the middle of April, but I don't think this can wait until then. 


Impressions: I am happy with how things are going, except for the high blood pressure, and the elevated liver levels.  

Side Effects: Sleepiness, still sleeping at least 10 hours a night, more on the weekends, high blood pressure, bright light sensitivity, numb tongue, elevated liver levels, funky dreams. 

Gilenya, Week Six-ish-to-Seven-ish

I've decided to stop counting by days, and begin counting by weeks, because I'm past a month of treatment and counting days is becoming annoying.  Also, I am not a very good daily blogger.  Also, I might not ever publish these entries because I am lazy, so it doesn't matter to anyone but me. Also because I have been off-and-on-again with the Gilenya a couple of times in the past couple of weeks because of infections.


So, six weeks in and the foggy-mindless-absent-brain-ness is fading away. Yea me! But, I am still fighting the sleepiness. Still, I think it is better to call this sleepiness rather than fatigue because my Multiple Sclerosis related fatigue is so much different. I haven't maintained the M.S. fatigue-free-ness, nor have I maintained the I'm-not-sick-because-I-stayed-away-from-everyone's-germs-ness.  I got sick. So very sick. I had an urinary-track infection at the same time I had a sinus/upper-respiratory infection. Seriously.  No, SERIOUSLY. I wanted to die. Well, not really. But I did at least once during the illness wish that I had the power to always and forever make every person who is battling even the tiniest sniffle or tickle in the back of  their throat stay away from me and everything that I might have potential coming into contact with.


And, since antibiotics and Gilenya do not work well together, I went off of the Gilenya while I was on my Z-pac.  And, I then when I was starting to feel better, but I pushed myself too hard, and got all feverish and general-sense-of-malaise-y again. So, back on the antibiotics again!  Blah!


Also, the day before I came down with the massive double-infection, I was at the dentist getting my root canal redone. FEEL SORRY FOR ME! Root canal redone- meaning the work that was done before wasn't good enough, partly because I was taking a disease-modifying medication which represses the immune system. Gilenya, you are the reason my dental work is more complicated than normal people! As if M.S. wasn't enough to deal with!!!


Impressions: This low white blood cell count thing is sucky.


Side effects: Frustration, disease, infection, fatigue (today I am calling it fatigue), pain in shoulder, crazy-high blood pressure, and I am beginning to think that I might have some light-sensitivity which is scaring me about macular edema, but I'll worry about that tomorrow. Also, I have started to use the word "also" too much. 

Gilenya, Day Thirty-Six

First of all I just need to say, I have the best boss in the whole world!!! You might think you do, but no, I do. I am completely out of all my paid leave time, both vacation and sick leave.  I haven't been able to get back to a normal work schedule since I started the Gilenya because of the crazy Sleepiness. I can usually get in a 6-8 hour work day, which is a bit short of our 10 hour day. I have been working on the Annual Report at home, on the weekends, but I was still short hours last pay period. Financially, I can juggle, being short a few hours, but I was going to be really short for this pay period. Then my boss donated 100 hours of his sick leave to me. His incredible generosity has left me completely speechless, has reduced my stress levels immeasurably. I can begin to believe the affirmation that I have been whispering all week: "Things work out. It will all work out."  

Wednesday, we had our first Board Meeting since I have been on the Gilenya, and it didn't go well, at least for me.  My boss thought that it was a good meeting.  I was not on top of things, and halfway through the meeting I got ran into the M.S. fatigue wall. In the ten years I have been doing these monthly meetings, I have been able prepare and balance my responsibilities, as well as postpone or skip the interferon shots so I would never bottom out during a meeting, or a retreat, or a grand opening, or a city council presentation. Wednesday afternoon I ran into the fatigue wall so hard that even the simple act of typing hurt. At one point my ears started buzzing and I was seeing stars I was so lightheaded.    


When the meeting was over, everyone was out the door before I could blink, and so I couldn't ask anyone for help clearing the meeting away. Usually, my coworkers are really good about volunteering to help me with both the set-up and clean-up. I really do have great coworkers, but this meeting went late, and everyone had places they needed to be. I did it myself, which is not a big deal, it's my job and I usually can do it myself, but I had to stop and rest so many times it took twice the time is should have. I was at work until 8:30, which isn't even close to the latest I've ever been there, but as it got later and I got more tired I became concerned about driving home. Home just felt so very far away. I cried the whole drive home. When I got home I realized that I still needed to call my mom, because it was her birthday. Something that should have been happy, felt like one more hurdle I had to get over.  Now, I'm realizing that I missed a whole bunch of birthdays this week.  I'm such a bad friend. What is the statute of limitations on writing Happy Birthday on someone's facebook wall? 

Impressions: This has been an emotional, stressful, joyful, exhausting week. I have been letting myself get stressed about my fears: letting people down at work, letting my friends and family down, the piling medical bill, and I have been hyper-focused on my weaknesses, my extended sleeping schedule, the piling medical bills.  However, I am beginning to get a flicker of fear that the sleep issue and the reduced stamina might not get much better as I continue with the Gilenya. Every time something like this happens I go through the process of accepting that Multiple Sclerosis is disabling, and my abilities will be constantly changing. What I could do yesterday, I might not be able to do today.

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. 

Gilenya, Day Twenty-two

I haven't gone anywhere but work and doctors' offices since January 19th (but I have done drive-thru for dinner on the way home from work) and am beginning to feel a little... not lonely, SO not lonely, but detached from the rest of the world. So detached am I, that I have stopped watching the news, and that concerns me. I've never been one-who-must-be-around-people-to-be-happy, and so feeling detached from the world isn't sad per se, (please, friends and family, if you ever read this, I do love you, but I am really enjoying my it's-okay-to-say-no-because-my-doctor-told-me-to time), but I recognize that the way I'm livings isn't the best way to be a citizen of the world.

 However, I also recognize that I haven't gotten sick at all, not sniffle or a sore throat, since I started on the Gilenya. My neurologist told me to treat myself as if I were a new-born baby for the first six months on the Gilenya, or until I know how my body will respond to lower white blood cell count, and I have, and it worked! Everyone should be as isolated during cold and flu season! Imagine a world without any colds or the flu!  

Even though I have been staying away from public places, I have felt well enough to go on a few walks around the neighborhood, just to get away from the apartment. It's been about a year and a half since I felt confident enough to walk any distance away from my home without fear of being struck immobile with fatigue (remember the M.S. fatigue wall?) and unable to get myself back. So, woo hoo Gilenya!

Impressions: We have had a pretty mild winter so far, no real snow, and I miss the snow. At this moment, I ache for it. I want to hear the squeak-crunch of boots breaking through the crust of a large snow drift. I want to walk in the muffled silence of falling snow.  Walking around in the grey-brown Utah winter doesn't inspire me to spontaneously quote Robert Frost, and all winter walks should inspire Robert Frost moments. It makes me so happy that I am complaining about something so ridiculous as no-snow-winters-are-not-poetic issues rather than M.S.-is-hard issues!    

Side effects: Sleepiness, still sleeping 10 hours or more a night; high blood pressure; pain in left shoulder, arm and wrist from return of previous M.S. flare-up. Tongue numb (can't taste anything) from return of previous MS flare-up.

Gilenya, Day Eighteen

I have become suspicious that at least one person on the Facebook Gilenya Support Group is a plant from Novartis. The reason I am suspicious is this person constantly proclaims that she has never had any side effects from the Gilenya, AND she almost always counters anyone's claim that they are having any side effect with with something like: "according to documents published by Norvartis, that isn't a side effect" or "M.S. causes that, it's not the Gilenya" or "How old are you? I have this problem because I'm getting old/going through menopause, it's not the Gilenya." This has really been upsetting to me for three reasons:

1. If I'm feeling something that I haven't felt before, or in a way that I haven't felt before, I usually try to find a reason for feeling the new thing, by eliminating the things that haven't changes and identifying the things that have, therefore I have already explored options related to other medications and/or symptoms of M.S. 
2. M.S. patients get enough discrediting of how they are feeling by doctors, nurses, friends, family members, coworkers and everyone else that I really, really think that it is important to have a safe place to share experiences and concerns. or ask questions without having to worry about someone saying "No, your experience is invalid." *
3. I can accept that my experience with Gilenya is not every person's experience with Gilenya, why can't you!?!

(* For the record, I don't believe that any of my friends, family, or coworkers have intentionally made me feel like my experiences aren't valid. It just happens... with the best of intentions. I understand that the various people that have done this are just trying to find a common ground, to make me feel not not-normal, which is nice of them but... Generally, when someone has asked me about how Multiple Sclerosis effects me and I tell them fatigue/word loss/mild stuttering/clumsiness/adverse reaction to heat/occasional numbness/vertigo, and their response is: "I feel/everyone feels that way/has that some of the time or all the time" which makes me feel like they think I'm just being a big baby and I that I need to get over myself already because what I'm feeling is not a big deal, because apparently everyone feels the same way from time to time.)

Impressions: I feel good overall and happy with Gilenya. I still don't think it is a miracle drug, but it improved my outlook. It is nice to not have to do shots anymore, and FINALLY, I only have a few  injection site reaction scars left. They have almost all faded away. Woo Hoo! I would post a photo of my injection-site-reaction-free thighs, but I'm not going to. :)

The larger-than-the-quarter puffy red spot on my thigh is an injection site reaction from when I was on Rebif,. Every time, I did a shot I got an injection site reaction. With three shots a week, my thighs were covered. As they fade, they would change from red and puffy to bruise-like.

Side Effects: Still Sleepy with a capital "S"; short-term memory loss; and vivid dreams.

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.