Biogen Idec congratulates me on 1 year of Tysabri

I get tons of Biogen Idec.  Most of them are about conference calls with other Tysabri users talking about how wonderful it is.  Actually, I only assume it's a marketing ploy as I have not actually taken the time to call in.   This email mostly talked about being on Tysabri for 1-year:

Wondering what to expect after your first year? We've got the answers you need. 

It's been a year since you started taking TYSABRI. As you reach this important milestone in your treatment journey, you may have some questions about where you are now - and what you can expect moving forward. We've got the answers you need to stay on track:

Q: I haven't had a relapse recently. Does this mean I may stop taking TYSABRI?

A: Even if it's been awhile since you've experienced a relapse, it's still important to keep taking TYSABRI as prescribed by your doctor. 

WOHOO!  Love me some drugs!

Q: What should I talk to my doctor about at my 1-year appointment? 

A: Your yearly doctor's appointment is a good time to ask any questions or concerns you may have about your MS. Think of what you'd like to discuss and take a notebook to write down key points you want to remember. It's also a good opportunity to discuss your TYSABRI treatment, so be sure to talk to your doctor about how TYSABRI is working for you. 

My next appointment isn't until June.

Q: What do I need to know about the risk of PML?

A: It's important to talk to your doctor about a rare brain infection called progressive multifocal leukoencephalopathy (PML). TYSABRI increases a patient's chances of getting PML, although it usually occurs in people with weakened immune systems. The risk of PML increases with a longer period of treatment or if you have received medicines that can weaken your immune system prior to starting TYSABRI.

As you evaluate your treatment, it is important to continue to weigh the benefits and risks. Keep in mind that only you and your doctor can make the decision that's best for you. That's why it's important to get the conversation started. 

I like being reminded that this thing may kill me.  I'll be honest, it's worth the risk because even if I do get PML because dying sounds much better than living bound to a wheelchair, unable to see, unable to talk, no appetite...and going crazy.  I feel MUCH better now.

I have one more year of Tysabri.  It's bizarre that the first 12 months have already flown by.  My relapse last year was a nightmare. 

   

1 Year of Tysabri

I started my Tysabri in March of 2011 and am actually getting my 13th dose as I type this. I’ve really come a long way since last March. Not only have I busted out of rehab, but also a wheelchair. The funniest thing is that the first time I got Tysabri, I wouldn’t move my arm  for fear that the needle would fall out of my arm or that I would end up ripping it out. Now I wave my arm around and am even typing on the computer. This is something I wouldn’t have done this time last year. I was such a needle scaredy cat. Just used to it now!

Hanging out getting my infusion

This is the halfway point. I will be on Tysabri for a total of 24 months. The nurses at Samaritan Ambulatory Services in Corvallis are awesome, but I’ll be glad when I don’t have to do this anymore. Being a pin cushion isn’t exactly fun.

I come in every 4 weeks for my treatment. A nurse asks me all kinds of questions to make sure I’m not having any problems with the Tysabri and to monitor whether or not it is causing me any problems. Then, I get stuck in the arm with a needle. The left arm is usually the best arm, but I’ve been known to have my right arm stuck. For an hour the medicine drips through me and then when it’s done, I have an hour of observation. During the 2 hours, I have my blood pressure checked every 15 minutes. I hate having my arm squeezed.

My IV pump with the Tysabri

It’s a pretty relaxing two hours. Today is actually the first time I have brought my computer with me. I had to since I didn’t want to fall behind on my blog. I have my fans to consider. Mostly I just sit and watch netflix on my phone to help pass the time.

I have to be mindful of the four week time frame. I can’t go beyond a window of two days before and two days after. When planning my trip back to Ohio I have to be sure that it doesn’t coincide with my infusion. If all goes to plan, I should be fine to go back to Ohio at the planned time.

Who knows what my treatment will be after I’m done with Tysabri. There could be totally different medications in a year. I’m not too optimistic that there will be a cure as there has to be so many drug trials, but it’s nice to think that there may be a cure. I can only hope.  

My MS Medications

If you have MS and you stumbled across this incoherent trite, don’t listen to me. I’m not suggesting any medications. All I am talking about is what I have taken.  Please seek out a plan with your doctor...not a crazy internet lady or Web MD. Every time I use Web MD, it says I have cancer...even if it’s just a hangnail.  

The Internet...it just makes you a hypochondriac.  

Medications I have taken due to MS:

Steroids - ROID RAGE!  Ok, I’ve never had Roid Rage and my testicles are the same size they’ve always been.. Wait, what?  Prednisone and methylprednisolone.  If I understand this....Prednisone is an oral drug for acute exacerbations and methylprednisolone, like Solu Medrol, is an IV steroid that is for crazier ones.  I’ve had Solu-Medrol several times in the hospital.

Diazapam - Woohoo VALIUM!  When my eyes went crazy with muscle spasms, I was on this loverly pill to help calm them down.  It helped.  Now I have two eyes that only move when I want them to move.If my eyes go wonky again, I'll be sure to talk to my neurologist about diazapam.  

Sertraline - My doctor thought I was depressed, or at least should have been depressed.  I was prescribed the Zoloft, but never took it.  I didn't feel it was necessary.   Some people do really need anti-depressants, but I felt that I had enough chemicals in my body.  Any case of the blues went away with sunshine and good times with friends. 

Betaseron - I had to stick myself every other day with this stuff.  I hated it.  1) I hate needles 2) I could never remember the schedule.  Writing it down was too much effort apparently.  Betaseron is an interferon self-injected subcutaneously (between the fat layer just under the skin and the muscles beneath).  No fat jokes please.  I had to switch around where I stuck myself, stomach, thighs, under the arms.  Living by myself, sticking my arms wasn’t happening.  I just switched between left and right sides of my stomach and thighs.  

Tysabri - This is the latest drug I am on.  I had to be checked to make sure I wasn’t prone to PML, progressive multifocal leukoencephalitis.  Apparently it’s this crazy virus that can cause death.  Score.  The tysabri is pretty hardcore.  I hope I don’t get PML and die.  I was willing to take the risk because the severity of my relapse at the time was pretty awful.  I didn’t want to live like that.  Once a month I go into a clinic and some really sweet and funny nurses stick me in the arm for my monthly infusion of Tysabri.  It takes an hour for it to drip through me and then I have an hour of observation.  This will go on for 2 years.  This month is my 1 year anniversary so I’m taking some buckeyes to the Nurses at  Samaritan Ambulatory Infusion Services here in Corvallis.  They make me giggle.  Hopefully it works, but I may not know until I’m under a lot of stress again.  I don't plan on moving across the country again any time soon.

Thumbs Up for Tysabri!

 
Vitamin D - I don’t really get that naturally here in the PacNW since the sun is MIA a good deal of the year.  The Linus Pauling Institute studies Vitamin D and does say that it reduces the risks of MS.  There are other studies specific to Vitamin D and MS.  I follow the work of Dr. Adrian Gombart here on campus to see if there is anything else going on with Vitamin D.  


Those are the meds I can think of off the top of my head.  I'm sure I took other things to deal with various symptoms, but MS makes me flakey.  I'm allowed to forget things.  Hmmm...maybe I should get drugs for THAT!