Check out my latest blog crush. I heart tsj photography.
I won’t be changing my Tysabri protocol but there is a new study delivering Tysabri by Sub-Q injections.
Take a FREE Financial Peace University Class from Dave Ramsey. I signed up!
I am thinking about going sugar free. Maybe I will try these seven steps.
Before I give up sugar, I would love to try a caramel marshmallow from Whimsy & Spice.
Happy weekend…don’t forget to spring forward!
I like to drink green juice. I like the taste but I especially like how it makes me feel. I haven’t juiced in a while because I always crave it more in Spring and Summer. Juice is usually cold and in the Winter, I don’t want anymore cold. Today was an exception. Yesterday, I had my 33rd Tysabri infusion with my usual IV Benedryl to pre-treat. That usually wipes me out the day of my infusion and it often creeps into the next day, leaving me less than energetic for at least the morning.
Usually, I just suffer through it but today I wanted to fight it and see if I couldn’t turn things around earlier than most of my “day afters”. The juice worked! I feel better! I think it is because I thought it would work….and it did. That kind of positive thinking doesn’t work for me every time, but more often that not.
Thank you Green Goodness!
This is one of the best articles I’ve read about the state of affairs with Tysabri. It is factual and thoughtful in it’s presentation of current events and options for moving forward.
Tysabri
Breaking News
The Facebook group, Tysabri: As long as my body tolerates it, I’m not scared of PML!, may have a somewhat casual title, but it addresses a very real concern in the MS community: Tysabri and the risk of a brain infection—PML (progressive multifocal leukoencephalopathy)—that it poses. Biogen Idec., the co-marketers of Tysabri, recently announced that since the FDA approved the therapy in 2004, there have been 24 cases of PML, including 4 deaths. This announcement has brought to light a number of questions and concerns regarding Tysabri, many of which Dr. Vollmer will address in this article.
After first receiving FDA approval in 2004, Tysabri was pulled from the U.S. market when it was linked to three cases of PML. In 2006 it was returned to the market after the safety profile was further explored. Tysabri works by blocking the passage of inflammatory immune cells through the blood brain barrier, thus slowing the progression of MS. The risk of PML is related to the fact that Tysabri may, in fact, work too well. For most people, the immune system would fight off PML without any difficulty, but because Tysabri is designed to fully block the MS immune attack on the brain, it also blocks the immune system’s ability to fight infections in the brain, such as PML. It appears, however, to have little if any problematic effect on other types of infections.
To read the rest of this article go HERE.
The Rocky Mountain MS Center is a patient-centered organization dedicated to changing the way we think about and treat MS in order to protect the futures of those living with the disease.
There are currently 24 reported cases of PML in Tysabri Patients. Four people have died. 1/3 of the total cases are from the US. Biogen Idec stopped reporting individual cases of PML on their website in July. At the time, there were 13 cases reported and recently the 11 new cases were reported. Many are outraged about this lack of disclosure. In my opinion, this wasn’t a smart smart PR strategy, but don’t believe it was a cover-up or an effort to hide the new cases. AND, it didn’t change my mind about anything.Tysabri is still my best option until something better comes along.
When I was taking the birth control pill, I never got monthly updates about the number of patients who had strokes or blot clots or died and didn’t expect that. I have to believe this is a similar story with other drugs, so why is the Tysabri – PML connection so sensationalized? Or is just because I am more aware of it that it seems like that?
I met with my Neurologist yesterday and confirmed that the incidence of PML is more frequent after 24 Tysabri infusions and there may be changes on the horizon, including a label change for Tysabri indicating that risk, and drug holidays or other protocol changes if necessary. I also learned that now that we have more information about the 24 PML cases, there are ways to more carefully screen patients for PML risk. There are several things involved including IGG Subclass 1-4 testing and JC Antibody testing. Eventually, this could help not only patients currently takingTysabri assess their risk but also new patients considering Tysabri.
Ask your Neurologist about the research that is going on and being planned to better screen for PML risk. Tysabri is the most effective DMD out there for MS. Get the facts. Do not make your drug choice based on fear. If your Neurologist doesn’t know the answers or is not familar with Tysabri, it is ok to get a second opinion. Get the facts and then make the desicion that is best for you. There is great information online but there is also very skewed information, especially on message boards. I find in many cases that employees from other drug companies will comment with inaccurate information in an effort to fuel the fire and increase the fear. If I read something online that I question, I bring it to my Neurolgist’s office and ask an expert.
Hysteria and panic only leads to hysteria and panic. (I think we have seen that demonstrated with H1N1). Educating ourselves, and making thoughtful decisions when it comes to our health and quality of life is essential.
Feeling Good and Moving Forward,
Courtney
I had my 27th Tysabri infusion on Wednesday. I typically have my infusions in the morning and then take the afternoon off and go to sleep early. I typically wake up feeling either ready to go or almost ready to go!
This past infusion, I was scheduled for late afternoon. I didn’t get home until after 6pm. When I woke up Thursday, I was draaggggging! I need more recovery time from the infusion and will aim to always have a morning appointment.
I was looking through a journal that I kept when I was first diagnosed and taking Rebif. I am sure my blog entries from that time are similar but wow, it was rough! While I tried to stay upbeat, the side effects that I experienced made it tough.
Some of the things I said:
“Rebif Sucks – Enough said!”
“I felt too tired to go for a walk”
“MS is here today, Tingly face and right arm are an annoying reminder”
“With a Rebif hangover, the hike was really hard”
“Headache and Neck Pain kept me out of work most of the day”
“I am shaking inside”
“Anti – Nausea Meds are kicking in”
“I feel drugged”
“I want to disappear and forget about everything. Forget about a positive attitude, forget about fighting, forget that my neck hurts, forget that my head hurts, forget I am tired, forget that there is a needle in my arm”
In between all of those observations were things like:
“I had a great massage today”
“So glad the weekend is here”
“Went to a football game, it was a blast”
“Getting up early tomorrow to ride”
“Had a great early morning walk with Mark, Bailey and Guinness”
“I am scared but will fight.”
“I will find a way to be healthy and strong so I can raise her to be healthy and strong”
“Tysabri is the answer if I don’t want to be sick anymore” – Sept. 15th 2006
“I am fully responsible for my own great health. My daily habits create my great health”
“I feel amazing and hopeful”
While I don’t have to live with the horrible side effects of Interferons anymore, I do sometimes have bad days or a bad attitude.
The good stuff far outweighs the bad….then and now.
Today was Tysabri infusion #25. I am tired but hopeful that this will be another great month. I feel lucky to have had the opportunity today to be infused. Not only am I fortunate enough to afford this very expensive drug but I am also so lucky that I work with Neurologist who knows that Tysabri is my best hope on the medication front for staying healthy and free of MS relapses and other issues.
I am also so grateful that with help from my family and friends, I can recognize when I am out of balance and need to re-focus and re-prioritize. Thanks to the caring people in my life, I am myself again.
