The online home of Will and Sara!
Posts tagged Tysabri
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!
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.
Gilenya: First Oral Treatment For Multiple Sclerosis
01 year ago
Gilenya (fingolimod) By Novartis
This post is a little late, but there has been a huge breakthrough in MS treatment. An oral medication by Novartis, Gilenya (formerly fingolimod and FTY720), has finally been approved by the FDA to be available by prescription as a daily 0.5 mg capsule as a first line treatment in October.
Adventures in Neurologists Peddling Pharmaceuticals
31 year ago
Tysabri : A picture is worth $6900!
My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.
Last night I trekked down to the basement of a branch of the AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.
Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.
01 year ago
Interferon injections are more than unpleasant.
I am so glad I make a habit of reading BBC News daily as US news agencies frequently skim over important things in favor of the shocking or violent. Today they published a story about new oral multiple sclerosis treatments that are likely to be available in England in 2011. As someone whose liver does not particularly like Interferon and is afraid of the risk of death from Tysabri infusions this might be a godsend. Since interferons are not available as generics (they contain living organisms and are exempt from status that would let them ever become generic) this could open inexpensive and more successful treatment options to a host of people who have no option but to live with the effects of the disease untreated. The full article and link to it are pasted below, but here is the basic information you want:
- The oral drugs in question are Fingolimod and Cladribine
- The drugs are considerably more effective at reducing relapses than current available treatments
- The drugs may increase your chances of herpes and cancer