Medications

Yesterday was my Tysabri day Tysabri is a medication that I receive through an infusion every four weeks.  I have to go to a specific location that has been approved by Tysabria to administer this medication in this , case Cancer Care Specialists of Illinois.  My doctor is Dr. Rose  My mom described as a "wafter" when she met him.  He is sort of ethereal and elegant.  But he is also very nice man.  My nurse's name is Sandy and she is a really lovely person, too.  She is the best needle inserter in the world.  She hardly ever needs more than one stick to get the IV in. 
I always have to answer four questions before I get the medication: did I receive any treatment with corticosteroids?  Did I have any major surgeries?  I am having any confusion?  And I forget what the other one is but I love the one about today having major surgeries within last 28 days without my knowledge.
Once I've answered the  questions and survived  sticks in my arm to start the IV,  I can sit back and relax and receive my medication.  Theoretically I'm supposed to hang around afterward to make sure I don't get PML which stands for progressive multifocal leukoencephalopathy.(PML is much easier to say).  There is a risk of developing PML when you're on Tysabri.  This is a condition in which the myelin rapidly disintegrates and you either die or become incredibly disabled.  The chances are like one in 10,000 or something and while this sounds pretty scary,  put one white marble in a bag with 9,999 black ones and see how long it takes you before you pull out the white one.  There's your chances..
There are two types of medications for MS.  There are symptom altering medications and there are disease modifying medications.  There is no curing medication for MS because it is no cure. 
I am on three symptom monitoring medications along with the Tysabri which is a disease modifying medication.  The tysabri is disease monitoring because it slows down the progression of the disease and keeps you from having exacerbations or worsening of symptoms.  Tysabri works making your sticky blood cells less sticky.  It's sort of like it puts little raincoats on white blood cells.  But the effects only last for about a month which is why you get the infusion every 28 days.  Once I was talking to Dr. Rose about that process and I told him of my analogy of the raincoats and he laughed.  He said that a male patients described the same process but said that the tysabri put condoms on the blood cells!  Therein lies the difference between men and women!
Other disease modifying drugs which I have been on include Avonex and Betaseron.  Those medications are interferons.  Interferons are protiens which occur naturally in the body and which are thought to support the immune system. So the interferon meds replace proteins which may be lost or are no longer produced in patients with MS.
the Avonex is delivered in a once a week injection into a muscle.  So once a week I would stick a needle about 3 inches long into my thigh.  It was just a little surreal to look at a three inch long need and think "I'm going to jab this into my thigh, now!".  But at least it was only once a week!  The Betaseron is also an injection but the needle is tiny.  We would call that a "skin pop".  That particular shot was every other day and had to be rotated around my body so that it didn't create scarring or thickening of the tissues.  I could  give myself the shots in my stomach and my thighs, but I had to have my husband do the shot in my backside..  I wasn't joking on the days when he gave me a shot in butt, that he was a literal a pain in the ass!
The Tysabri is much easier and less painful.  Plus I can rationalize sitting quietly in the chair for about two hours without feeling guilty that I'm not doing something more productive!
So that is the story of my medications and for now at least I am fortified on Tysabri!
A symptom altering drugs that I am on are Mirapex  for restless leg syndrome which my family calls creepy foot, Oxybutinin which combats the dreaded leakage problems, and Nuvigil which helps me stay awake for the day.  Those three along with my high blood pressure medication and three Metamucil tablets keep me functional.
Oh yeah, the cost of the tysabri is about $5,000 a month. Even with insurance after my deductible, it costs about $10,000 a year out of pocket.  The Nuvigil cost about $100 a month and the others cost about $40-$50 a month.  So between the medication costs and my insurance premiums I think I'd pay more in healthcare than I do for my mortgage.  Do you see now why I am pro Obamacare?
That's it for the day.  Stay tuned for more info about my life MS.