Choosing Tysabri

November 2, 2017October 8, 2018 ~ msgracefulnot ~ 12 Comments

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri. Maybe not for the rest of my life, but for now, it works. I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE. (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt. I would rather have QUALITY of life than Quantity. Hell, I jumped out of a perfectly good airplane remember? Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world. Hell, I believe they are also strong enough to help change it. The world we live in today is a scary place. (I think the city I live in was ranked the 6th most dangerous city in the United States.) My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML. When I do die, whatever the cause, I am donating my body to science. Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have. If I can help ONE person feel not so scared and alone in this world… I have lived.

My decision to start Tysabri part 4 of 5

October 27, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

I began receiving Tysabri at the end of 2009, or the beginning of 2010. I’m not sure which, but I will try to remember to ask when I go in for my infusion next month.

In the beginning, I was terrified that I was going to be that 1 in 1000 that would “catch” PML. (Some days I feel that I would have no luck at all, if not for bad luck.) I was also terrified of the needles; every doctor, nurse, tech, vampire, etc that pokes me with a needle blows my veins, and bruises me enough to make others question if I am abused. Thankfully, I have a port now!!

No I am not abused

hard to get a good picture of the port

Every 4 weeks, I would have a full day of “adventure” to get my infusion. (even though the infusion only takes 2 hours.) The adventure included: leaving my house at 8 am, driving 1 1/2 hours into the city, paying an exorbitant amount for parking, and making what felt like a 2 mile trek to the infusion room, all before getting to sit in the waiting room to check in for my infusion. After following the drug company’s protocol for checking in, I would have a 20 minute panic attack while the nurse looked for and blew my veins. (Did I mention YAH PORT?!?! Yeah, 3 years before I finally got one! I’m a slow learner.)

Next, came the actual infusion itself. This part was a piece of cake, all I had to do was lay or sit there for 2 hours while I received the medication intravenously. Ok, it was a little more complicated than that. I had to go to the restroom 2-3 times because of all the fluids I drank before hand to make finding my veins easier, in addition to the hours’ worth of fluids they pump in your body with the medication. It was still relatively painless. I kept telling myself, at least it was only one time per month instead of getting sick every other night, like I did while taking another MS drug, Betaseron. Once I made the long drive back home, (hopefully missing rush hour) I could sleep the remainder of the day away if I needed to, and I frequently did. To be honest, at times, I also worried if the stress the whole ordeal caused me would make me have another ms flare up.

The only “reactions” I experienced from receiving Tysabri were headaches, and a feeling of sleepiness which until the last few years, I assumed were from the “adventure” itself.

Tysabri didn’t automatically fix me. I didn’t get a big burst of energy or start dancing a jig. In fact, the first change was almost unnoticeable. After about 6 months, it dawned on me that I hadn’t needed steroids, or been hospitalized for a new flare up in several months. Once I started to wrap my head around the fact that MS wasn’t running me over like a train, I began to relax a little bit. I started to commit myself to learning more about Tysabri, infusion centers, and what else I might try to do to FIGHT BACK against the MONSTER that had been winning the battle with my body and soul.

I have a very difficult time putting my experiences with receiving the infusion over the last 8 years chronological order, or giving exact dates so I’m not going to try. I will, however; give a bit of a summary.

I have had 2 relapses in 8 years, and they were minor in comparison to the ones in the past. My depression has improved. I still battle it every day, but I have a more positive outlook on life than I did 8 years ago. While Tysabri DOES NOT treat depression, I do believe a lot of my outlook has changed because I am not experiencing relapse after relapse or fast progression. I can walk about ½ mile continuously on a treadmill. (More or less depending on the time of day what other activities I have done and the temperature in the house) I have lost 60+ pounds and have started MOVING more. I have done a lot of physical therapy, including horseback riding for 3 years. I gave up soda. I believe all of those things have helped me become a better “MS Warrior”.

I have mentioned before that I am not trying to “sell you” on Tysabri, or to tell you that it “fixed” me. I am still “broken”. BUT, it did give me hope.

Whatever path you decide to take on your ms journey (no it’s not a vacation, but it is a long road) I wish you the best and encourage you to fight harder than you think you can. I truly didn’t know how hard I could fight until fighting was ALL I could do.

I will work on trying to finish the last part of “this story” later this week, but it has taken me more time to write this than I thought it would, and I need to keep moving!!!!

My decision to start Tysabri 3 of 5

October 24, 2017October 8, 2018 ~ msgracefulnot ~ 1 Comment

And then this happened….

lovely foley bag w/ blood because I tried to be too mobile

I was trying to continue strengthening my legs (pushing the time that I was out of the wheelchair) and I lost my balance AGAIN, and fell AGAIN. I was home alone and of course I didn’t have my cell phone with me. I tried to push myself up and instantly knew that I had broken my wrist. By the time I was able to get to a phone to call for help, I had peed on myself and my wrist had doubled in size. ARGH!

I called a neighbor who helped me get cleaned up and drove me to the hospital, where they determined that my wrist was indeed broken and they would need to do surgery.

Over the next few days, I had surgery and began to have ANOTHER flare up. (maybe because of the stress of surgery?) I don’t know for sure, but back in the hospital I went. This is when I learned the importance of having a TEAM of doctors that communicate with each other. My new neurologist was not on staff at the local hospital, and I was back to the same doctors that I feel just throw steroids at everything.

While laying in the hospital, I made decision to give Tysabri a try. MS was winning the battle. I wasn’t LIVING. To be honest, a part of me didn’t want to live anymore. I am not saying I was suicidal, though I have been there before, but if this is what my life was going to be, I didn’t want it. When I got out of the hospital I again went to see “the wizard” in Chicago, to start the process of being approved for Tysabri.

Some of the most important things I learned while making my decision to switch to Tysabri, and about living with a chronic illness in general are:

“Dr. Google” is a scary ass monster
There is no shortage of information regarding MS available online (in fact there is almost too much)
While most have good intentions, most people on Facebook and other areas of the internet (myself included) are not doctors, and since their symptoms of MS and their lifestyles are probably different than yours, so is the best course of treatment for them.
Doctors are just “practicing” medicine…they don’t know everything. Unfortunately, some of them are paid in some way to promote drug therapies.
It is so important that you have an unbiased friend. You need to have someone that you can share your fears with. If you don’t have a friend that fits that description, there is NOTHING wrong with seeing a counselor.

In addition to spending countless hours on google, I found a group on Facebook for people that were taking tysabri, and made a new best friend in the process. I could probably write an entire website on our friendship and bond over the years, but I have to save that for another time.

I am not endorsing Tysabri in any way. I am only sharing the experiences I had, and what led to MY DECISION to begin Tysabri. In my next post, I will share some of the experiences that I have had while being on this medication. Thank you for following!

I’m really having fun meeting new people 🙂

My decision to start Tysabri 2 of 5

October 23, 2017September 22, 2018 ~ msgracefulnot ~ 6 Comments

It was time to find a new doctor that would FIGHT FOR ME and listen to me. After seeing several local doctors, I ended up going to Chicago to see an MS specialist. I live in a small city in Illinois, (you know the kind where the number of livestock out number people?) so this was gonna be a helluva trek. One and ½ hours each way. After getting approval from my insurance company, gathering 50 lbs of MRI films, and my ginormous box of medications. I headed off to see “the wizard”.

When I entered the hospital, I was overwhelmed by the number of white coats running around. Let’s not talk about the fact that most of them looked half my age. (I’m still getting used to the fact that the doctors with the newest technology are younger than me. When I was growing up the same doctor that delivered you took care of you until you died or they died …..whichever came first)

Thankfully there are many better ways to choose a doctor now.

This is the point that I was introduced to Tysabri. I thought I was overwhelmed by the number of doctors? That number was nothing in comparison to the amount of information I received. What sticks out in my Brain is :

DOC : Tysabri or Natalizumab is the newest strongest drug on the market for treating MS. It has even been shown to help reduce lesions, thereby reducing disability. Some people have even been able to walk again!!!! ( And all the other sales pitches out there.)

Grace: Ok, so what’s the catch? Why isn’t everyone using it? And why haven’t I heard of this before?!?

DOC: Well, there is a small chance that taking Tysabri can kill you.

Grace: STUNNED SILENCE

Doc: But the risks are low, only about 1 in 1000 people have “caught” the brain virus that leads to death.

Grace :

MORE STUNNED SILENCE, maybe some drooling?

Doc: Grace looking over your MRI’s and prior medical history, Betaseron is not doing an adequate job of controlling your symptoms. Having to take steroids 3 times a year is not well controlled you’re spending more time in a wheelchair than you are out of it. You’ve told me yourself that you have watched other family members die from MS, don’t you think this is a better choice?

Grace: blank stare

Doc: Why don’t you take this reading material home with you? There is a lot of information available online as well. I think you will find that this is your best hope.

In 2009 the information I found about Tysabri was:

Tysabri was the most aggressive form of medication available to slow the progression of ms
You didn’t actually “catch” the brain virus which was called PML
Your risks for developing PML were stronger if you had had a lot of chemo or steroids in the past.
They would be testing your blood frequently and doing MRI’s to look for changes showing the development of PML.

Not enough information to make me switch yet.

MY decision to start Tysabri Part 1 of 5

October 22, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

My decision to start Tysabri, or Natalizumab was not made overnight. Well maybe it was, but I think the events leading up to it made the decision for me.

Before you read anymore, please know that I am not endorsing or recommending that anyone choose this drug, I am only sharing MY Journey, and it is a long one.

I either made my decision to start or actually started Tysabri in 12/2009. I was in the hospital for IV Steriods AGAIN for ANOTHER MS Relapse. I had been averaging two to three flares a year for the last 5 years. This time I had couldn’t move or feel either of my legs. I was beyond depressed. I literally think I slipped into a vegetative state (not clinically, but I certainly wasn’t there mentally)

My MRI’s showed several herniated discs, my spinal cord was pinched and displaced, but I also had several active lesions from MS. No one could agree on the cause of the loss of use of my legs. To call the doctors a team of doctors was ridiculous. It felt like they were fighting with each other instead of FOR me.

After being hospitalized for the week, I began to regain some feeling and very slight movement of my legs. The five days of steroids were over and the only thing the doctors could agree on is that it was going to take some time and a lot of physical therapy for me to hopefully regain some mobility. They discharged me and wrote orders for home health to visit me everyday.

I don’t know if it is MS, the drugs I took for MS and depression , or basic survival skills of blocking out bad memories, but the timeline is a bit blurry for me about how things happened next. The things I do remember though are:

Being left outside in the rain in a wheelchair

We had at least one step to get into or out of our house at every door. Navigating a wheelchair with very weak legs was hard enough, but the steps were killer. I was so tired of being confined to 4 walls in the house and NEEDED to get some fresh air. I begged my now ex-husband to take me outside, just for a little bit. It was a major ordeal, and turned into a shouting match about why he hadn’t built a ramp yet. He stormed off and left me outside. ( I don’t blame him for his actions, I was scared and very mean and the mood swings were insane. He had been doing double duty with the kids and working full time and didn’t have a clue how to build a ramp) It’s important that I share this story because I think it was the first in the series of events that lead to my decision to start Tysabri. It began to pour outside and there was nothing I could do but sit. I tried to wheel myself to the front door, but the stairs where in my way to getting close enough to reach the door or doorbell. No one could hear me crying or screaming for help. My youngest daughter came looking for me to tattle on her sister for something she had done. When she found me, I don’t know who was more scared. Her or me. I was crying and freezing. I had never been so helpless.

My youngest daughter wouldn’t come near me.

After that night, my youngest daughter wouldn’t come near me. She thought that if she touched me, she would break me more. Looking back now I think she may have been a little bit afraid of me after watching me experience a couple episodes of “Roid rage”. Maybe she was afraid that I was dying. This memory, I can tell is too painful to relive or think about too much, So I will try to focus on the positives and leave it at that. It was time for something to change, if the doctors I had were not helping me I would find one that would.

We are supposed to make our children feel safe and loved, not afraid!

OMG what had I done?

I will post the next part soon. I never knew that writing could be so therapeutic and I am working on laying those demons to rest.