Tag: chronic illness

My decision to start Tysabri Part 5 of 5.

~ msgracefulnot ~ 4 Comments

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus.  Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?”  Blah, Blah, Blah.  (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.)  What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule.  I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8.  For the first time ever, I experienced what people refer to as “slump week”.  As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks.  I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings.  Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening.  I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping.  I had a harder time focusing.  I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot.  In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip.  (visualize marching?)  I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor.  I also developed sciatic pain down the right side of my body.  While they say this is not related to MS, I have to disagree.  My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop.  I was angry, depressed, or sleeping all the time.  Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily.  Yah more pain!?!?!

ENOUGH was enough!  Time to put on more armor and fight!jousting

In August, I told my neurologist that I didn’t care what “someone somewhere” said.  I wanted to be on Tysabri every four weeks.  It works for me.  Stop trying to fix what wasn’t broken!  I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed.  I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion  next week.  I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every  day for at least a total of a mile.  (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there.  One step at a time.footprints

 

 

My decision to start Tysabri part 4 of 5

~ 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

~ msgracefulnot ~ 1 Comment

And then this happened….

 

 

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!

fallen
MS and Modesty don’t mix

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:

  1. “Dr. Google” is a scary ass monster
  2. There is no shortage of information regarding MS available online (in fact there is almost too much)
  3. 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.
  4. Doctors are just “practicing” medicine…they don’t know everything. Unfortunately, some of them are paid in some way to promote drug therapies.
  5.  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 🙂