Gilenya experiences wanted!

Early this morning I received the following comment on my “Gilenya: Day 00” post from azcharli:

“I started Gelenya on December 19th. The very first 6 hour observation ended with me waking up in the ER with a heart rate of 34. The hospital wanted to keep me overnight for observation. As luck would have it my heart rate went up to 57 just in time for the nurse to tell the doctor and get me discharged. As soon as he saw it I unplugged the monitor and I was out of there.
My heart rate is still in the 40's and 50's.
Anyway 2 days later I had to go back to the ER with blood red eyes and terrible eye pain, oh and the horrible headaches. Not 1 person including my Neurologists assitant have ever heard of Gelenya. Needless to say they had to call poison control to find out about it.
I have been back twice with severe eye pain and headaches. The hospital told me it has nothing to do with Gelenya and sent me home. I just got back again tonight with the same thing. Severe eye pain when i look to one side or another which in turn makes my head pound. Once again they say it has nothing to with the drug. Bull... I have had MS for 17 years and have never had this before. I am curious to see how many others are in my situation. Honestly, I would rather be blind than go through one more day of pain and suffering.
Signed, Scared in Arizona.”

First, a disclaimer: I am not a doctor (and I don’t even play one on TV). The information that I share here is based upon my personal experiences as a patient and should be considered anecdotal. Before trying any recommendation or following any advice offered on this blog (by me or commenters) please discuss it with a medical professional who is fully aware of your medical history.

Sue, I am so sorry you are having this experience. MS is tough enough; we shouldn’t have to deal with all the medication-induced side-effects as well. OR have to put up with medical professionals who are unfamiliar with the drug but are certain that it is not what’s making you sick.

When I read this, my initial thought was that you have optic neuritis. Usually when I have optic neuritis I have excruciating pain whenever I move my eyes and I rub them so much that they get bloodshot. I also get a terrible headache from all the eye pain/stress. But I would suspect that after 17 years you would have had optic neuritis and know how it presents. If you’ve never had it (lucky you), that could be what’s going on. My neuro treats with IV steroids and it resolves.

Outside of that, I have never heard of anyone having this cluster of symptoms or this experience with Gilenya. BUT I know that doesn’t mean much when it comes to MS, side-effects, and drug interactions. And because Gilenya has been on the market for such a short time, I’m sure there are a lot of things that are still unknown about the drug. Frankly, we know that Gilenya can damage our vision, so I don’t understand why it is so far-fetched that it could cause eye pain!

I would suggest having your doctor call Novartis and inquire about your symptoms. It seems that with most drugs there are symptoms that are so rare that they don’t have to report them on the information sheets. With a simple phone call from a medical professional, the drug company will let you know if this is a side-effect of the drug. It is also good to share this information with them (especially with new medications) so they can keep record of the various side-effects. Who knows, maybe your experience isn’t so unique after all.

I’m gonna link to this post on my Twitter, Facebook, and Google+ accounts. I invite everyone to share their experiences with Gilenya in the comments. Just remember that these drugs work differently for each person, so check with your doctor before making any health-related decisions.

Gilenya: Days 02 - 07

Current medication: Diltiazem, Zyrtec, Vitamin D (high dose- taken on Wednesday), Gilenya, Ibuprofen, Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Sad, frustrated.

Physical: right foot numbness, jaw pain, headache, nausea, chills, scratchy throat, tingling lips, cough, extreme fatigue, dizziness, sharp pain in right calf, stiffness in both legs, hypersensitivity in both legs, shadow-like presence in lower right quadrant of right eye, difficulty with balance.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue, confusion, difficulty saying certain words.

Sleep: On 7/18/11- 7 hours uninterrupted, 1 “sleep episodes” around 1:30 PM.

Other (falls, dropping items, etc): None

Aids: canes

Tests/Results: closely monitoring blood pressure-still slightly elevated.

Appointments: None

After seeing the NP last Tuesday, I went home to rest. Basically, she wanted to see me and make sure I was OK. They took my blood pressure, gave me ibuprofen, and monitored me for a half hour. I was released home and cleared to return to work on Wednesday. She also reminded me to take Zyrtec twice a day to relieve some of the discomfort (it isn’t working).

Since then, things haven’t changed. I am in a lot of pain and have increased all forms of pain management without much relief. The pain level makes every day tasks even more difficult than they were a few weeks ago and it is slowing me down immensely. I feel like my head is full of oatmeal. Not good.

I am still moving forward with Gilenya. I received my first 28-day shipment today and didn’t panic or freak out. That’s good right?!?! Yes, let’s take our victories as they come.

Now I just need my body to work better so I can cut that list of meds down again. I was doing to so well for months without such a long list. My budget will thank me, too.

Gilenya: Day 01

(This covers the time from the last post until 11 AM today.)

Current medication: Gilenya, Ibuprofen, Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Anxious, sad, afraid.

Physical: terrible headache (7 out of 10), nausea, scratchy throat, tingling lips, cough, extreme fatigue, dizziness, sharp pain in right calf, throbbing-ache in both legs, stiffness in both legs, hypersensitivity in both legs, right eye pain with movement, shadow-like presence in lower right quadrant of right eye, difficulty with balance.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue, confusion, difficulty saying certain words.

Sleep: 2 hour nap then 5 hours uninterrupted, no “sleep episodes” today.

Other (falls, dropping items, etc): Extremely high blood pressure

Aids: canes

Tests/Results: Pre-Gilenya skin check clear, high blood pressure throughout the day before and after gilenya

Appointments: 07/12/2011 11:30 AM with NP to discuss side-effects, scheduled to see PCP on 07/15/2011 at 10:45 AM

Started Gilenya today. Shortly after the first dose I began feeling a scratchy throat and tingling lips. After 1 hour, by blood pressure spiked dangerously high in response to the medication, but there were no other cardiac symptoms so we just waited for it to return to normal on its own. As the day progressed, I developed a cough, headache, and felt numbness/tingling in lips. When released at the end of the observation period, the NP suggested I return for observation the next day but I refused and promised to check-in the following morning. When I came home I was exhausted and took a nap and an anti-inflammatory. I felt very cold and shivered the whole time, but didn’t have a fever. After the nap I sat up for 30 minutes or so then returned to bed for the night. It took about 90 minutes to fall asleep because I couldn’t get warm, but once I was sleeping, I stayed asleep until my alarm rang. I woke up feeling much worse. The headache was almost unbearable. I took the second dose of Gilenya at 6:10 AM and about 30 minutes later the scratchiness and tingling returned. My energy was low, but I went to work. I checked-in with the neuro’s office around 10:45 AM and after reporting my symptoms they wanted to see me immediately. I left work and headed to the office.

Gilenya: Day 00

(This is the first post in a series I'm hoping will document the changes that occur while I take Gilenya. The details of each post will cover anything that happens from the time of the last post to the time of the current post unless otherwise specified (versus a 12:00 AM-11:59 PM schedule). Every 4 weeks I will do a retrospective/summary entry using the same format.)

Current medication: Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Anxious, hopeful.

Physical: sharp pain in right calf, throbbing-ache in both legs, stiffness in both legs, hypersensitivity in both legs, right eye pain with movement, shadow-like presence in lower right quadrant of right eye, slight blurry vision helped with reading glasses, difficulty with balance, headache, mild fatigue, sleepiness.

Sleep: 6 hours, woke up approximately 5 times (momentarily) during the night, no “sleep episodes” today.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue.

Other (falls, dropping items, etc): None.

Aids: cane

Tests/Results: None

Appointments: 07/11/2011 8:30 AM with NP to start Gilenya

In general, I feel “normal.” Most of the things going on have been constant for some time. The eye pain started nearly 3 weeks ago and was checked by Dr. C. She thinks it will resolve in time, I disagree. The visual presence is similar to what happens after you stare at a bright light or light bulb then look away. It started last Wednesday night and has not gone away. I will speak to the NP while in the office today and ask her if there is any cause for concern.

Good and Bad

I know I should be sleeping in preparation for my group meeting tomorrow, but I can't sleep. I finally had my long awaited follow-up appointments with the rheumatologist and neurologist this week. Some good news, some bad. The good news, I don't have lupus. I wasn't surprised to get that news, but was a little peeved that I had to take a 30 minute bus ride, wait an hour, and pay $20, just to have 2 minutes with the rheumatologist. She's really sweet and was very thorough, but all she had to say was, "you don't have lupus" and that could have been done over the phone.

Today's appointment with Dr. C was much more eventful. I still had to wait an hour, but I got my money's worth. Since they never seem to listen to me, I came to the appointment with a list of my current symptoms that I gave the doctor as soon as she walked in the door. I included descriptions of each symptom and told her I wanted help with all of them. We discussed them and then she explained that she only felt comfortable working on two at a time and we can work on the list over the next few appointments. She suggested which two she thought were most important (bladder control and depression), but gave me the power to choose which ones I wanted to work on. I explained that my ultimate goal is to get back to work and my memory loss and current level of depression are making it really difficulty to do anything. I mean, I'm terrified of getting lost again and I'm too depressed to muster a smile most days, so leaving the house only happens when absolutely necessary. That's not exactly compatible with most work environments.

Dr. C said there isn't much she can do for memory loss directly, but believed that my mood could be tied into the memory problems. She wants me to see another doctor at her clinic to be evaluated and determine the best course of action for the depression (he's a neurologist and psychiatrist). In the meantime, she wants me to start an anti-fatigue medicine that has helped some of her patients with their cognitive difficulties and mild depression. I see the other doctor in three weeks, though I wish I could have seen me today. Hopefully, the anti-fatigue stuff will help.

Since we're hitting three list items with one pill, she let me pick one more item and I chose bladder. I recently had an accident at home and it's honestly just as hard to deal with, emotionally, as accidents in public. I told her that I have some incidents of sudden emptying, but mostly my problem is urgency that leads to leaking when I can't find a restroom in time. She wasn't sure if my perception of the problem was correct and said that it's more common that I am not fully emptying my bladder when I pee and that could be leading to my problems. To determine the cause of my problem she needed to ultrasound my bladder when full and after I peed. Of course I'd emptied my bladder just before seeing her. She still wanted to do the ultrasound during that visit and presented me with a 12 oz cup of water. I drank 4 full cups before we were ready to do the ultrasound. My bladder was in fact emptying properly and she prescribed and once daily oral medicine to help with the urgency.

All-in-all the appointments went well. I usually take a list with me, but it made a huge difference to give a list to the Dr. and not wait for her to transcribe what I was saying. Or what she thought I was saying. Next time I want help with insomnia and pain.

Not good and getting worse

If you follow me on Facebook or Twitter, then you know I'm going through a rough patch. Unlike the rough patch that I was having earlier this month, this time I'm having a lot of physical challenges along with my cognitive troubles. Since Sunday, it's gone from intense fatigue to not being able to walk, even with the assistance of my crutches. It's incredibly frustrating and demoralizing. I keep telling myself to be strong, it will pass, but I'm on day 3 in bed and am losing all patience with my MS.

Despite all the symptoms, I don't think this is an exacerbation. I could be wrong, but having had a major episode just 3 months ago, I can't see another one coming so soon after. Plus, this one is so different from the last. Last time it hit me quickly, but this time it's slowly building up and getting worse. But you know what, exacerbation or not, I feel like crap.

As of this morning, my entire left leg is heavy and numb and so is my right foot. My legs are covered in prickly, burning hot pain that runs all up and down them and gets worse in any spot that's touched. I also have a pressure (like my head is being squeezed) and stabbing headache on the right side that's causing my eye to throb and water. I'm incredibly fatigued and sleeping all day and all night with little difficulty. When awake, I'm pretty alert, but I have moments where I completely zone/space out and can't think at all. This is one of the more puzzling symptoms, because when it happens I feel like I completely disconnect from my body and am just sitting next to myself. It's really strange.

So, I'm just trying to cope and let my body heal. I see the neuro next Wednesday and am gonna try to tough it out until then. For now, I am thankful for the internet and that we have a tv in the bedroom.

Feeling Better

First, thank you for all the emails and Facebook messages. Your kind words were a big help in raising my mood. I promise I will respond to them all, just give me a little time. I was under a pretty dark cloud until Saturday afternoon, but it wasn't anything a bus ride and my favorite surroundings couldn't fix. By Saturday afternoon I was back to my old self. I am also happy to report that after several weeks of not having the energy or drive to do anything around the apartment, I finally got ALL my cleaning done today. That's right, I got all the dishes washed and put away, I vacuumed, I cleaned behind the toilet, and even did some spot removal on our carpeting. It feels so good to be able to clean. I don't know if I've told you all, but cleaning is one of my favorite hobbies. I would rank it right after singing but before cooking (I am so weird). So, it feels good to spend a day listening to podcasts and scrubbing our apartment.

All that cleaning also got me thinking. To be honest, I didn't think about anything new, I just figured out a possible partial solution to a complex problem. Money. Let me tell you, having a chronic illness and trying to maintain some level of wellness is an expensive endeavor. Be it maintenance care (like monthly prescriptions or follow up doctor visits), to acute care (like ER visits or hospital stays), to supplemental items (like vitamins or quality-of-life items), even with decent medical coverage, the costs of trying to be as healthy and happy as possible can quickly become unaffordable. I'm at that point. Well, I was never in a position where I could afford to be sick, but the costs of trying to be as healthy as I can be have surpassed the resources. Between the hospital bills, all the new prescriptions, the influx of doctor visits and prescribed physical therapy, plus all my household bills, the well has run dry.

While, I can't stop treating my illness or seeing my doctors (well, I can but I'm not going to), I have decided to eliminate as much extra stuff as possible. This includes all vitamins and supplements and sleeping aids. I am also going to try to cut down on my use of bladder control pads, which may mean more neurosis, but they are crazy expensive (even the store brand) and if I only use them when I go out, I can stretch that cost over several months. I am also going to speak with my doctors and see if I can see them every 6-8 weeks instead of every 4 weeks. And I decided that for now, I'm not going to do the physical therapy for my shoulder. I know it's important to maintain my non-MS-related health, but PT isn't feasible right now. I'm sure between my network of friends and my awesome Google-fu, I'll figure out ways to help my shoulder. And if not, I can focus on my shoulder after we figure out my stomach issues.

Speaking of stomach issues, I need to call the gastro and find out what's going on with the emptying study and if they saw anything on the ultrasound. I don't know how much longer I can deal with all the nausea. The Prilosec is not helping.

Oh, I also have two new symptoms to report. First, I'm starting to have significant numbness and tingling on my face. It's such a weird feeling and very different from the numbness I feel in my hands and feet. It's only on the right side of my face mostly around my upper lip and usually happens in the morning. Though, it's tingling right now just to spite me.

The second symptom is very distinct memory loss. I've had small moments of forgetfulness for a few months, but recently acknowledged that there are recent events that are completely gone. I'm having a bit of a hard time with this because my memory was once one of my best traits. Now there are lists upon lists upon lists and I still forget. I'm sorry about all the birthdays I keep missing. :-( But it's not all bad. Now that I realize I'm losing some things, I'm spending more time tracing memories and exploring the things I do remember. For example, a song will come on the radio and it'll feel oddly familiar. So, I'll think about it and maybe remember that it's something I heard in college. Instead of leaving it there, I'll try to remember where I was or who I was with, and the next thing I know all the emotions and laughter of the original event are back. (Hey guys, remember "Run by Collective Soul?") I love this. I am such a sentimental-nostalgic-emotional creature and these personal little moments are the best. And by some miracle, these memories are usually really happy and remind me just how much I am loved and love the people that I call family and friends. (I know I'm a loser and don't keep in touch, but I still love you.)

OK, enough sentimentality for tonight. Time for bed. By the way, I'm still looking for part time or gentle full time work. If you have any leads, please email me. Thanks.

Lazy Sundays

Today has been such a lovely lazy day. We are less than a week before the wedding and I've been trying to slow down a bit so that I'm as healthy as possible for our big day. I'm doing pretty well too. I have just a tab bit of numbness in my toes, but I'm getting around the apartment completely unassisted. I have much less daytime sleepiness and fatigue, which is fantastic since I was up until 2 am last night, despite taking a sleeping pill. Oh, and I made dinner tonight without having to sit down one time! I'm doing really well, except for this dumb eye which still hasn't done back to normal. I'm trying to remain patient, but I'm ready to see again.

In happier news, I'm extremely excited to see my family at the end of the week. They arrive on Thursday morning and will be visiting until Tuesday. Gah! I'm so excited that I'm shaking. This is going to be so great. Please send lots of good energy our way for our safety and joy.

One last thing, I may not be around for the next two weeks as we're planning and then celebrating. One of us will update if something spectacular occurs, but I've decided that my MS is going to cooperate and be quiet until at least July 27. Thank you.

Still in the hospital

But hopefully not for long. I tried to get discharged last night after my last infusion but Dr. C wouldn't release me. I told her that I was walking more normally and my pain levels were down, but she didn't care. I was really bummed, but Dr. knows best. She wanted me to keep my mind open about rehab (there wasn't a bed for me yesterday and then they started having trouble with my insurance, so I was ready to give up on that possibility) and also remember that I was really sick when I came in here and just because I'm feeling better doesn't mean I'm well. On top of being just ready to go home, I was worried that I wouldn't get to sleep and another night of staring at the walls and curtains would drive me wild, but I slept soundly. I needed that. It's also helped me reconsider rehab and if they offer me a bed there I'm going to take it.

This was a really difficult decision for me. I really miss being at home, and having my things, and my routine, and sleeping next to my wife. I've never liked change and after 6 days of being in a foreign environment, I'm getting mighty antsy. But I'm gonna suck it up and do what's best for my body and my family. I can't shrug my shoulders this time, I need to get as close to 100% because it's not just me. Oy, I hate being an adult.

As far as my health is concerned, I'm doing a lot better. My leg pain is low, my stomach pain is manageable, and my strength is getting better. I can walk short distances unassisted and even went all the way down the hall yesterday without getting tired. My vision hasn't gotten back to 100%, but I'm pretty sure the haze is getting lighter. Phew. Things are getting better, I like that.

A new symptom and an older one getting worse

My newest symptom (or at least the symptom that I've recently identified as probably MS-related) is choking. Lately, I've been having instances where I go to swallow, the food starts to go into my throat, but I don't swallow. I choke. Then I start to panic, my eyes water, and I gag/cough for several seconds, before self-preservation kicks in and I'm able to calm down, close my eyes, and tell myself to swallow. And then it's over.

This has happened at least twice a day for the last 4 or 5 days and each time the situation is different. I'm choking with food, without food, while standing, while sitting, while watching tv, while cleaning, and even while singing. I've been choking so much that my throat is sore. I don't know how to make this stop or happen less frequently, but I am on alert.

I'm mostly optimistic about dealing with this because I can usually get my throat clear by just concentrating and telling myself to swallow. It seems so simple, but it's like when I start to swallow my brain forgets what it's doing midway and I just need to remind it. It's pretty scary, but I'm dealing with it. I also know how to do the Heimlich maneuver on myself, just in case that ever becomes necessary (and since the falls started I've been carrying my phone around the apartment with me just in case).

The symptom currently getting worse is numbness in my legs. Since last week I've been having these episodes where, on just one side, my baby toe will go numb. That's fairly normal, but over the next 30-45 minutes, my other toes will go numb and then the numbness will spread up my leg to my hip. I will remain numb from toe to hip for about 2 hours and then it disappears. It's really strange and painful. When my leg is numb, it feels heavy and achy. If I touch it or try to put weight on it, sharp burning pains shoot from the point of contact throughout my leg. I have no idea why this is happening or how to make it ease up. Luckily it only happens on one side at a time and the most I get an attack like this once a day.

Oh, and regarding my eye, I haven't noticed any improvements yet. I think the darkness has lightened a bit, but it's hard to tell. It is still painful to move the eye.