The online home of Will and Sara!
Posts tagged Multiple Sclerosis
Diary Of A Gilenya Pioneer: Fingers Crossed
04 months ago
Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are truly just not right for my body.
With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!
Disappointment / Contentment
17 months ago
meh.
I have looked forward to buying Star Wars on blu-ray for Will for a very long time. Unfortunately, we just found out the original versions of the movies aren’t included at all, and the HD versions aren’t even in widescreen. We’ve gone ahead and cancelled our pre-order and will just wait until an acceptable box set comes out. I’m sure there will eventually be 10 different box set versions and plenty of people will pay for them all. This is so disappointing. What to include in this set should have been a no-brainer.
That said, I’m really excited about Legend finally on blu-ray (and with the director’s cut), the Stanley Kubrick blu-ray box set,, and (finally) the real Lord Of The Rings blu-ray box set (the previous one was missing footage). I’m not a nut for the LOTR movies, but they are a lot of fun. Will and I both really admire Kubrick, and I am kind of nuts for Legend.
On the MS front, Gilenya has been going well as a treatment. Downsides are that I’m a bit drowsy sometimes and a bit cold (both seem so random). Sleep is difficult. My skin is definitely more sensitive than usual, especially to sunlight which I didn’t think was possible. I have no idea if it’s healing any damage considering how badly I react to heat and summer has been brutal. In approximately 3 months I will have more information about whether or not the drug is affecting my eyes or my liver. Right now I’m chalking up random bruises to Pye going crazy at night and beating me awake with bags of treats.
Diary Of A Gilenya Pioneer: First Dose
18 months ago
Gilenya: The Pill Of Things To Come
Will and I spent most of last night in a smoky club in Charlotte called The Milestone not being able to hear Young Widows because the place was tiny with awful acoustics and the bands had huge equipment. The mold is all that keeps the place from going up in flames everytime someone puts out a cigarette on the floor. The audience there seemed like great people who all seemed to know each other. I truly wish more great shows would come to Greenville or that we had a similar scene of seemingly good people who just love music. Also, apparently since seeing Blonde Redhead a few months ago at Variety Playhouse in Atlanta, they have come out with extra big PBR (this appears to be a requirement).
Getting to bed at about 4:30 am was probably a mistake. Although it was really great getting to see our friends Jon & Britty and they introduced us to Vietnamese food for the very first time.
This was probably not the best way to spend the evening before my first dose of Gilenya. I spent the whole day in the neurologist’s office hooked up to heart monitors and trying to stay awake. I finally finished a book I’ve been meaning to read by Wendy Rose and got a few other things done as well. For the most part, it went alright.
UPDATED : The MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘o’ Death
48 months ago
Grey's Diagram Of The Body's Intercostal Muscles.
Lately my absence has been due to serious trouble with something frequently called the MS Hug or sometimes Girdle Pain or sometimes Girdle Band Sensation. There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (although not always). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor here. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work at a telecommunications company and have no medical background.
The Gilenya Saga : How Insurance Hurts Patients – UPDATED
39 months ago
Enough Said.
No entries in a while… for a few reasons. Mostly to do with the sadistic nature of private insurance.
Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” Within seconds, I had what must have been an attack. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At it’s worst, it’s the kind of pain you don’t want to live through.
I have been to the ER where morphine and Valium to the vein had little effect. I have a purse full of narcotics to keep me out of the ER and, somehow, at work.
A Reader’s Story – Kathy’s Success With Gilenya
310 months ago
The message below was sent to me by a reader named Kathy who is also using a blog to chronicle her adventures in treating MS with Gilenya. She’s had tremendous success with it right away. Stories like this give me so much hope!
I have had MS since 1987, although it was not diagnosed until 1992. This is often the case with MS, as we all know. I have been on Beta Seron since 1993. I tried Ampyra last year with no success. I had a major flare-up about four months ago, and steroids no longer worked. My doctor gave me the choice of Gilenya or Tysabri. I hate MRI’s and they are necessary when you are on Tysabri. I selected Gilenya!
When you begin Gilenya, you are given the medication under supervision. Your blood pressure and heart rate are monitored each hour. It is a long six hour day, but it went well for me. I was told that it may take between two weeks to six weeks, to see any results. For me, my improvement began in five days!
I can honestly tell you that going on Gilenya was the VERY BEST decision that I have ever made. It took me from barely being able to walk, to walking FAR more easily. In every way that I can think, Gilenya is a Godsend! I am not a very computer savvy person,but I started my own blog! I wanted others to know what a difference it is making in my life. In my blog, I chronicle my days and the improvements which I am making.
The web address is http://gilenya-girl.blogspot.com/ I hope that you can take a peek, as the help which Gilenya is offering me is pretty great! I have been having difficulty with the website. If the web address does not work, GOOGLE: Gilenya + Walking Tall. You should be able to find me! Good Luck with your Gilenya decision…
Kathy
The Gilenya Saga : First Contact!
110 months ago
Today I received my first phone call from Gilenya / Novartis, one month and three days after submitting forms to them. Nurses are specifically assigned as case managers to patients and stay with them at least through the process of getting started on the drug.
The call mostly consisted of me answering questions about my health history and current doctors. How long have I been diagnosed with Multiple Sclerosis, have I had recent vaccinations, etc. We went over the tests I would need to complete before the first dose, and she told me that they were still undergoing a “benefits investigation” to determine if I was eligible to receive the drug.
The Gilenya Saga: What Am I — Chopped Liver?
010 months ago
Pâté
There is some good news in my quest to start Gilenya – and it really is starting to feel like I’m seeking the holy grail. On the day I ceased Rebif I also saw a gastroenterologist for my elevated liver enzymes. The tally so far is $800 for the consult, $600 for the results, and forthcoming bills for some blood tests and an abdomenal ultrasound. Results are that I am clear of all liver diseases – he seemed disappointed.
In hindsight, I should have just waited to see the GI. After almost a month of being off Rebif, new blood tests reveal that my liver function is almost back to normal. Previous tests actually showed my enzymes at about 6 to 7 times the high limit for normal, which was worse than I had known. Now I am only a few points out of bounds. Time should take care of the rest.
Gilenya Speedbumps
811 months ago
Tick Tock, Gilenya, Tick Tock
Almost two weeks ago I posted that I was in the process of switching to Gilenya. Not so fast, I suppose. My neurologist’s office staff was eager for me to let Gilenya set up all of my doctor appointments for me to undergo the necessary tests. By their accounts they faxed in my information the morning I was in their office, and then a few days later when they hadn’t heard anything back. And then again when I called them after a very unproductive phone call with Gilenya.
Several months ago I switched positions within the company to work in a 24/7 network surveillance group. We rotate weekends, leaving me with a “weekend” during the week for a month here and there. I had hoped that I could use these days to get through all of my doctor appointments this month. But the opportunity to accomplish that is rapidly vanishing.
Diary Of A Gilenya Pioneer (UPDATED)
611 months ago
Gilenya (Fingolimod)
As it turns out, similarly to my father’s results with Avonex, Rebif has caused my liver enzymes to shoot up to about 3X the upper limit of normal in the span of slightly less than 2 years. My options?
1) Tysabri : the risk of PML is too severe for me to brave this drug – reputed to be a risk of death or severe disability as high as 1 in 200 for some individuals and 1 in 2000 for others
2) Copaxone : statistically slightly less effective than interferons – works great for my father but I truly don’t want to do a daily injection except as a last resort
3) Gilenya : aka Fingolimod – when this was first approved by the FDA I wrote a blog post to summarize all the information I could find – it is the only oral disease modifying drug for multiple sclerosis – DING! DING! DING!
I have chosen to switch to Gilenya.
