Multiple Sclerosis Resource Centre
  • Home
  • MSRC Grand Opening 30/05/12
  • About MS
  • MSRC Services
  • Get Involved
  • MS Research News
  • MSRC Groups
  • Useful Resources
  • Welcome To Josephs Court, MS Centre Of Excellence
  • Advertising
  • Best Bet Diet Group
  • E-Newsletter
  • Contact Us
  • Investor in People
    You are here : Home » Get Involved » MSRC Interactive » Gilenya® User Diaries » Kim's Gilenya Diary

    Kim's Gilenya Diary

    A A A
    [Print this page]

    Share |


    I was diagnosed in 2000 at age 33 after experiencing blurry vision, tingling sensations in my legs, and bone crushing fatigue.  I started taking Copaxone and stayed with that drug for about 8 years.  Due to some family changes and the fact that my skin was becoming unmanageably stiff, sore, and basically impenetrable, I found myself skipping doses with no apparent adverse effects. 

    You see, at this time I was fine. Tired sometimes, occasionally wobbly and weak, but mostly fine.  MRI told a different story perhaps, but in 2008 I was so sick of being injected with painful medicine, repeatedly scanned and monitored and then reminded that nothing really cures MS, I thought I might just take my chances and step away from the med-wagon.

    I moved 1000 miles from home, alone, to try to work on quality of life issues.  I went off my antidepressants. I lost about 65 pounds. I commute around my beautiful new city by bicycle.  I met a lovely man who encouraged me to travel with him throughout the US.  We spent 7 months traveling all over the Southwestern United States.  Other than this pesky, incurable neurological disorder, I was in the best shape of my life.

    In the fall of 2010 I had a bad relapse.  My hands are affected by lack of sensation and pain, I wobble all the time and generally don’t know where my feet are, cognition fails after about 4 hours of work, and bladder function is flawed.  Fatigue is my constant companion and I can only walk about 3 blocks before I need a rest or a nap.

    I tried Rebif for about 6 months.  I found that drug to be worse, the depression I had left in Massachusetts was back with a vengeance and I had no appetite, no energy, and no real hope. My symptoms were the same and the medicine just made me sicker.

    It took a few months to get Gilenya set up.  They require lab work, an EKG, and visit to an ophthalmologist to get a baseline reading in case I develop macular edema.

    Gilenya scares the heck out of me.  I’m a big enough woman to admit that.  The materials they send before you take the drug seem cheerful enough; page after page of photos showing smiling people carrying motorcycle helmets through flea-markets or bird watching or strolling on sunset beaches BUT each page was also filled with dire warnings about side effects I’d never even imagined.

    Desperate times call for desperate measures.  I could feel the MS gaining on me and I decided to take a risk.

    © Multiple Sclerosis Resource Centre

    July 2012

    Wow, it's been a while.  Gilenya is seriously the most boring drug I've ever taken.  Not a bad thing, just nothing really noteworthy. No apparent side effects still and the MS seems to be holding steady.  I live in Savannah, Georgia in the US and it's quite hot and muggy here this time of year but I'm experiencing no additional discomfort from the drug.

    I met with the eye doctor for a follow up check for macular edema and he says every thing looks normal.  I have the orders for my follow up labs to check liver function. My appetite has definitely decreased although my weight is holding steady. The Rebif I was taking previously killed my appetite and and subsequently labs showed some problems  with my liver levels requiring me to come off that drug.  I'll report back after I get those tests.

    I've been on the Gilenya for about 4 months and could imagine, barring bad results on my labs or MRI , being on it for years to come.  A friend with fibromyalgia reminds me that we take these maintenance drugs for HOPE and preparation so we don't get worse while we are waiting for a cure.

    Update 14/05/12

    Another month has gone by and I'm still with the Gilenya.

    The minor problem with my eye seems to have cleared with no intervention.

    I've had a little decrease in appetite but my weight is holding steady.

    I've really detected no other changes or side effects. 

    My trainer hasn't noticed any significant improvements in the last weeks.  I'm going to get my eye's rechecked in June and labs drawn so I'll report back after that.

    No news is good news for the time being. 

    Best wishes to all, Kim

    19th April 2012

    I had planned to write something every week to talk about the trials and tribulations of taking Gilenya....seriously, it's just not that interesting.

    The hardest part of taking this drug is breaking through the complicated blister pack packaging. (Note to Novartis, people with mobility issues take this medicine, give us a break.) 
    As far as side effects, my right eye feels like my eye lashes are on the inside of my lids and I'm a little nervous. I suspect it is just allergies, but since they made such a big deal about eye complications I may give the doctor a call if it's not better by next week. 

    My trainer comments again that my flexibility seems better these past few weeks. No serious headaches. I still have MS and all its associated ups and downs, but Gilenya isn't adding to the burden.

    Gilenya update April 5, 2012

    My Gilenya experience this week has been quite boring. 

    I’ve had a minor headache on a few days, but nothing that can be directly attributed to the drug rather than the MS or something mundane like too much sun or a heavy backpack. 

    I’ve had something bordering on diarrhoea a few days, but again could be anything. No cough, no serious infections. 

    My energy level is about the same as it’s been for the past couple months; good days and bad days.

    Gilenya is a pill so there aren’t even any injection site reactions to talk about; I simply take it with my other meds and supplements and go about my business.

    So far I’ve seen no change in the MS but the drug itself has just become routine.  Sorry, I almost wish I had some drama to share with ya’ll.

    Seriously, boring can be good.

    Gilenya update March 28, 2012

    Wednesday, 3/28/2012. One week since my initial dose and I haven’t seen many side effects they predicted such as diarrhea or back pain. On Monday I had what I like to think of as “MS times 5” meaning that I felt 5 times worse than I usually do. Today I started out at MS times 3. I’ll take it. Legs aren’t as achy and only a slight headache this evening. My trainer notes that my flexibility and extension is better than normal. I feel extra wobbly today and I find myself shuffling rather than walking by later afternoon but not too bad.

    Monday, 3/26/2012. My legs hurt getting out of bed. My left hand which normally has tingling and lack of sensation was spreading the fun all the way up my arm. I felt as if gravity had been amplified during the night. I went to my usual appointment with my trainer and ended up crying because I felt so crappy. I didn’t even work out; he just massaged my aching quadriceps and calves. He did note that my flexibility seemed to be better and he was able to get more extension from me than I can usually do.

    I know, logically, that Gilenya is a serious and potent drug and that it’s doing things to my body I’d rather not think about but deep down I’m an impatient child. I want to be better NOW! And I know there is no magic cure but I can wish, can’t I?

    Saturday, 3/24/2012. My partner and I went to the farmer’s market near my house to buy vegetables and then to the coffee shop for a treat. 10:30 a.m. and I was already so exhausted and my legs ached. I called off work and spent the rest of the day reading in bed. I had a slight sore throat and kept falling asleep as I read.

    Friday, 3/23/2012. I met with my trainer early in the day. My energy level was about average, no headache, a usual amount of wobble. That afternoon I was very fatigued and elected to take a taxi to work rather than riding my bike to the bus stop as I usually do. I work from 5 to 10 a few nights a week at a job that is sometimes hectic, but not at all physically strenuous. By the end of the evening I was lying with my head on the desk waiting for my ride.

    Wednesday, 3/21/2012.  The big day!  That exclamation mark may indicate excitement in some contexts, but for me it was filled with dread.  All the literature they gave me and warnings combined with the fact that 11 people have reportedly died whilst taking this drug in the last year (currently being investigated by FDA and EMA) had me second guessing myself right up to the moment I walked through the door.  Was I insane to be willingly putting poison into my body?

    Most of the life-threatening effects of Gilenya occur within the first 6 hours of the first dose requiring that I be “observed”.  I arrived at the office (not my regular doctor) and was warmly greeted, given a tour of the facility, and shown some nearby restaurants where I could grab some lunch.  Apparently the staff was less concerned about me keeling over during the day than I was which heartened me a bit.  I was shown to a room where I would be spending the day with a recliner, a TV and a little fridge.  I filled out more paperwork and signed a few more waivers and then had my blood pressure and pulse checked. 

    The drugs were shipped directly to this facility, avoiding the risk of me going all crazy and reckless and taking the pill myself rather than under medical supervision.  The medication itself was anti-climactic; the doctor removed the capsule from the blister pack and watched me take it. Nothing. No reaction.  I spent the next 6 hours playing video games on my laptop and getting my blood pressure and pulse checked every 15 to 30 minutes.  The most exciting part of my day was when I went next door and bought a box of envelopes and some M&Ms.  I ended up taking the bus home (my usual method of transport) rather than calling for a ride.  I was feeling for the first time in a while optimistic.

    More next week…….

    Related Items
    Debbie's Gilenya Diary
    Liz's Gilenya Diary
    Mike's Gilenya Diary
    Toots Mstruth

    Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us.