Monday, March 30, 2009
He got his Chicken Pox vaccine and ended up getting this golf-ball (diameter, not height and everything) size welt on him arm. He never got a fever, never got any other reaction, and did just fine. The welt is almost totally gone now.
I did fine, too. After learning of my immunity I guess I must have really sold myself on the belief that there was no way I could contract Chicken Pox due to my "super power" like immunity levels.
Of course, incubation for the virus is at least 10 days from exposure, so, um, I guess I'm really not out of the woods yet....
Whew! There's the hypochondriac I know and love. I'm back!
No news on the Fingolimod front is always good news.
Another boring normal day -- and I'm thanking God for it and loving every minute of it! :-)
Tuesday, March 24, 2009
I called her this morning and apparently she never got my message. When I asked if it was ok for my son to get vaccinated, she misunderstood and asked if I meant that I wanted to get vaccinated.
I said "no! It's just that the new consent form had all that added stuff about not being around people with chicken pox or those who had been recently vaccinated and I just wanted to make sure I do the right thing. If he's not to get vaccinated, then I'll send someone else to take him to the doctor's office so I'm not exposed to kids with the pox, and I'll let them know not to give him the shot."
She said "let me check your file and I'll call you back".
Within 10 min. she had located the results of the lab work that Novartis had done on me, same as all the rest of the trial participants in light of the 2 deaths from viral infections related to chicken pox.
She said "Oh, you don't have to worry! You have a strong immunity. In order to be considered a positive test for antibodies sufficient enough to allow you to stay in the study, you must test at a level of 1.0. Your levels are 1.70. You are very immune, so don't worry about it. Go get your son vaccinated and don't be afraid of the doctor's office."
I breathed a sigh of relief in knowing that I could accompany my son and get all the dirt from the doctor first hand instead of trying to rely on John for any details. Whew.
Being the compulsive worrier that I am, though, on the way to the appointment it occurred to me that lab results are often misread or inaccurate....what if....
Nooooooooooo! I have to quit thinking like that! But I am a card carrying member of the WCSDDA. AKA Worst Case Scenario Day Dreamers' Association. You cannot possibly know or control what the future has in store, so why not imagine the worst case scenario and then be pleasantly surprised and relieved when you survive another day?* It makes living on the edge more attainable for those folks who don't have the finances to go sky diving or mountain climbing. For those of us who have mundane lives, the WCSDDA is a way to invigorate yourself and keep your pulse pounding.
*Not for the feint of heart or for that matter, not recommended for people who have no imagination.
Sunday, March 22, 2009
The informed consent I had to re-sign the other day at my 18 mo. study checkup specifically stated that it could lead to fatal complications to be exposed to the Chicken Pox virus.
I read the words knowing that Novartis has to cover their butts and include anything that could possibly happen in the informed consent, so I wasn't really all that alarmed about it. After all, I already have HSV in my system so I'm not really sure I can even GET chicken pox. I don't think I would be as susceptible as say someone who has never had any type of herpes related viral infections.
I left without a copy of the informed consent -- that's how worried I was -- I forgot to even get my copy.
But on Friday a routine call to my son's doctor's office left me rethinking my level of concern over this new instruction warning me to stay away from anyone with Chicken Pox or anyone recently vaccinated against it.
My son has asthma and he's on Singulair and Brovex as maintenance therapy that seems to (finally) have his breathing issues under control. He ran out of Brovex and there wasn't another refill left, so I called his doc's office to see if they could call it in for me.
Then it occurred to me that he really needed his yearly physical, so why not schedule that at the same time? I got an appointment for next Tuesday.
As we were about to conclude the call I said "oh, one more quick question..." and proceeded to ask if they used a live virus for Chicken Pox vaccines and if they had many kids coming in lately with Chicken Pox.
Once I explained why it might behoove me to know the answers, she got the nurse to call me back.
Turns out they do use a live virus. I had gotten that confused with the Polio vaccine (I think) that they used to give a live version of but don't any more. The Chicken Pox vaccine is live and always has been.
So my dilemma is, do I go with him to the doctor's office and just wear a mask and take my hand sanitizer with me? Do I take that risk and expose myself to possible contact with the virus? If I choose not to go, however, then I'm not in full control of the interaction with the doctor. I really like having first hand knowledge of what the doc has to say straight from his mouth and not a "he said something about something" version from someone else (i.e. John) who might not a) pay attention, b) understand c) worry enough to ask the right questions in response.
A true hypochondriacal worrier's nightmare!
Of course, the equal and opposite worry is that I will contract Chicken Pox and it will eat me alive and kill me while Novartis looks on and shakes their heads and "tsk tsk's" me because they told me so and my 22 sets of initials and one full signature prove that.
And on top of that, the nurse said my son is due for his shots. One of those is the Chicken Pox virus that "they" are recommending everyone get revaccinated with these days.
Obviously he can't get his vaccination while I'm in this study, but what about later? I mean, it's my deep desire and greatest wish in the world that I get to stay on Fingolimod (despite it's stupid name) well past the end of the trial and on into my golden years after it gets approved.
What does this mean for my kid? He will be always vulnerable to Chicken Pox? Or does the fact that he already gets wicked cold sores (a strain of the herpes virus that also causes chicken pox) mean that he's got some build up of antibodies?
I sure wish I knew the answers. It's not just the strategy of how to get him seen by his doctor without unnecessarily exposing myself to the virus that is the issue. He's a kid who goes to public school. I spend some of my time at that school, around lots of kids. I go grocery shopping...where there's lots of kids. I go to Wal-mart...where there's lots of kids.
How does one know if someone is contagious? And is it airborne or can you only catch it from direct contact? These are some pretty important questions that need to be answered given that I have a 10 year old, I have to buy groceries, and I tend to go to Wal-mart for stuff that I absolutely can't find to buy online or don't want to pay shipping for.
Trust me, if I could order groceries online and have them delivered, there would almost be no reason to leave the house and that would be fine with me. Getting out of this place via the portal of my computer monitor is escape enough. I like my life, I like my plot of land and my little abode. If I didn't kill every plant I ever touched, I'd plant a garden and have less reason to ever leave.
But, since I have brown thumbs and a kid who attends public school, avoiding the world beyond my staked out territory is impossible.
I put in a call to my study nurse and hopefully she'll call back on Monday so I know what to do on Tuesday for the appointment. I have half a notion to make John take him, but when they get in the exam room, to call me on the cell phone so I can listen in and ask the right questions, besides hearing what the doctor says first hand.
And someone has to remember to tell him not to vaccinate our son. I guess I could always pin a note to him with all the info on it. (our kid, not John)
When the trial nurse has given me the best plan of action, I'll post back the results.
Friday, March 20, 2009
Today marks exactly 18 months since I popped that first little mauve capsule and wondered "what the heck have I just done??!!!" and proceeded to worry about all the side effects to which I would soon be subjected.
I went yesterday for my 6 month Extension Phase checkup. Everything went really well!
I'm most proud of my performance on that numbers test thing. The one where they play the CD with the smug guy spouting numbers and you have to add together each pair. He says "Seven.....Nine" (you say "16) he continues with "5" (and you have to throw away that 16 you said and add 5 to the last number he said -- in this case 9 -- and say "14").
Out of the 60 consecutive numbers that he said, I missed ONE (1) (yes, count them...O-N-E) number!! I was so proud of myself. The lady testing me was pretty impressed, too.
The peg test went as it normally does. I fight getting them out of the bowl, putting them in the little peg holes and getting them back out to drop in the bowl again. I guess I do it in pretty good time, but I feel so uncoordinated while I'm doing it. My hands don't do the minutia the way they used to.
At my PFT (pulmonary function test) the guy who did it is the guy who always does them and has since my very first one a year and a half ago. He commented that, while I had been within the normal range on my very first test, it "seems like that stuff must be doing good for your MS because you don't seem nearly as weak as you did the first time I saw you."
Hey, at 48 I guess that's about as good a compliment as I can expect. I'd have rather heard "you look 20" but I'll take what I can get.
I got hooked up to the spaghetti mess of carburetor wiring and had an EKG. She swore I moved and I swore I held still. We both agreed it would just have to do.
I had lots of blood taken, peed in a cup, and had my EDSS test.
For those of you not familiar with an EDSS test, it goes something like this:
The neurologist examines you and has you follow his finger with your eyes while you hold your head still. (looking to see if you can track in a smooth motion with no jerkiness)
Then he touches your face with both hands in a gentle brush at forehead, cheeks and jawline while asking if it feels the same on both sides.
Then you have to smile real big and stick your tongue out and say "AH!"
He asks if you have any trouble swallowing or eating.
He then checks for weakness by having you push and pull against his resistance with each arm, and then each leg. He has you make a fist and has you pull and push against him with that to check the wrist.
Then he gets out this cold metal thing that buzzes when he wacks it with his hand. He places it against fingers and toes while having you close your eyes and tell him when the buzzing ceases and you can no longer feel the vibrations.
He asks if you feel the cold when he touches your body on each side in various places with that (apparently multi-purpose) gadget that was just buzzing a minute ago.
He has you close your eyes and he bends your fingers and then your toes both up and down, asking if you can feel in which direction he just bent said appendage.
He gets out the little triangle rubber mallet thingie that he wacks you with on various reflex points, knowing to stay well to the side of the flying feet when he wacks the knees. (I can cause my leg to fly out just by slapping my thigh when I laugh hearing a good joke. Never stand in front of me and tell a joke.)
He has you walk across the room doing the heel to toe drunk walk. Then you stand, feet together and arms straight out in front of you, palms up. He has you close your eyes and then he catches you when you fall over (as I did).
You walk on your tippy toes, you walk on your heels, you hop on one foot and then the other.
Then he asks you a bunch of strange questions while rating you from 0 to 4 on each answer (I think it's 0 to 4). I score 1 on a few answers but mostly 0s.
The questions are ones like "Are you depressed?", "Are you happy for no reason?" (like one must have a reason to be happy because life sucks and anyone that is happy for no reason must have a big MS lesion right over their sane spot on their brain.)
"Do you have any problems with bladder or bowels?" (no comment)
And a bunch of other stuff I don't remember...oh! One question was "has your MS interfered with your sex life?" and I answered "I don't know, I don't have sex." To which he actually chuckled and said "you said that 6 months ago, too." To which I responded with "If I had sex, it probably would interfere with my MS life, so I don't bother." Like people can't actually be happy and have a fulfilling life without sex?? I beg to differ...but that's another story.
Then after the game of 20 questions comes The Walk.
The dreaded walking of the hallway 25 times...to equal 500 meters. OMG it just KILLS me to walk that stupid hallway. I hate it. I did very well, completing the 25 laps and not crashing into anything although I tripped over my own feet on the very last lap and stumbled to the finish line. But I made it.
And that pretty much sums up the EDSS test.
There were a bunch of MS patients there yesterday. I know because they were all having to walk the hall and I don't believe they subject any other neurological group of patients to that particular punishment.
After all that I got my new meds (the real reason a fingohead like me shows up for the appointment in the first place) and had to sign yet ANOTHER informed consent.
This one was 23 pages long and now they have you initial every page along with the grand finale signature at the end.
I actually read all the new stuff in the adverse events section and found they had added a big section relating to the issues surrounding the earlier deaths in the study.
Now they make you well aware that anything related to the herpes virus is a dangerous (possibly lethal) thing to come in contact with. You are warned not to get vaccinated for chicken pox or to come in contact with anyone recently vaccinated, and to stay away from anyone who has Chicken pox, shingles, viral meningitis, herpes, etc.
Kind of hard to do considering my own HSV diagnosis, but nonetheless...
So, what started as a routine call to my son's doctor's office today to get a prescription refilled for his asthma ended up being a long drawn out strategy session about how to get him to the office for a physical that was due when many of the patients coming and going are going to either have chicken pox or have just been inoculated against it in the office.
They use a live virus for the vaccine.
I have a call in to my trial coordinator about what a regular person who has a life outside of being a guinea pig for science is supposed to do when their kid is due for a vaccination. Just how long am I supposed to avoid chicken pox exposure?? For the rest of my pill-popping life?? No answer on that yet, but I'll post the answer when I get one.
Anyhow, it was a great checkup. I was happy with how happy everyone seemed with my progress.
And now it's been something like 23 months since my last MS attack... I know it was April of 07 that was the last time I had steroids. I don't miss them one bit!
Normal, boring, everyday life is a damn nice thing to experience. I could get used to this all over again.
Here's hoping for another 18 months just like the last 18 months. Cheers!
Friday, March 6, 2009
This just in, from a Google alert sent by email:
ZURICH -(Dow Jones)- Novartis AG (NVS) chief operating officer Joerg Reinhardt said Wednesday Novartis plans to file experimental multiple sclerosis pill FTY720 for regulatory approval before the end of this year.
Reinhardt was speaking at a press conference to detail the pharmaceutical company's fourth-quarter earnings.
Company Web site: www.novartis.com
-By Anita Greil, Dow Jones Newswires; +41 43 443 8044 ; anita.greil@ dowjones.com
(END) Dow Jones Newswires 01-28-09 0426ET
Copyright (c) 2009 Dow Jones & Company, Inc.
So, the GREAT news is the drug will be submitted for approval by the end of this year...
The news that is between those lines is that my free drug ride may be ending sooner that I hoped.
Don't get me wrong -- I'm thrilled that the MS population will be able to finally have a pill added to their choice of CRABs, but I don't know where I'm going to get the money to pay for this stuff when they start charging. As soon as it gets approved, I've got to fork over money for the stuff. I'm uninsured and don't qualify for Medicaid...what am I going to do??
I sure wish part of the agreement to enter the clinical trial had been "free medication for life". Would it really have put that big a dent in Novartis' pocket to take care of us guinea pigs who so graciously allowed the experiment to proceed to the point at which their cash cow will be ready for milking??
Wednesday, March 4, 2009
It's the 10th anniversary of my MS diagnosis. Oh boy.
But, even though it's not really the kind of milestone you celebrate -- and I can see my sister now, quickly yanking the balloons down behind her back and throwing a dishtowel over the cake -- it's still a time for reflecting.
I vividly remember the day of my diagnosis. I actually was diagnosed a week or two before that, but I went to the head of the neurology department at Shands Hospital at the University of Florida in Gainesville, FL for a second opinion.
When that second doc confirmed what the first one said, that's when I gave up hope of thinking the first one was off his rocker and it was all just a big tadoo over a pinched nerve or something.
I drove myself home somehow. It was an hour ride in the silence of my own car, by myself, crying the "poor me" freakout cry.
I remember thinking first of my son who was not yet quite 6 months old. What kind of mother could I be? Since my neuro told me he had seen a lot of MS patients and he felt my case was "particularly aggressive", I was certain that death in a matter of a short time was imminent.
My mother knew a woman with whom she used to work who had been diagnosed 10 years prior. She was on Copaxone and had been in the clinical trial for it. Before that her husband had raised bees and they tried the bee sting therapy. She looked wonderful and had not had a relapse in many years. She didn't have any outward, telling signs of MS, and that gave me hope for my future.
I remember thinking..."what will I be like after 10 years??" and all the answers I conjured up terrified me. If I hadn't killed myself off, I had myself at the very least bed ridden.
Now, on this day of reflection, I think I want to see those balloons and have some of that cake after all, Lorraine. I've had my ups and downs and some really scary relapses that I wondered "is this the big one?", but I'm here. I'm walking, running and jumping, loving, eating, breathing, laughing, writing, complaining, joking, taking my pill and happy to be alive.
So for all you newly diagnosed, take away this nugget: I feel better now than I did 10 years ago. It doesn't all have to be gloom and doom. While MS is a devastating disease and has robbed so many of so much, you aren't automatically sentenced to that end of the spectrum.
I thank God every day for the fact that I have regained nearly all I have lost from each relapse.
MSers have a way of being thankful for the little things that the rest of humanity takes for granted.
Every morning when I get up and the carpet tickles my feet, I am amazed I can feel it... and I say "thanks, God," in my head. I know what it's like not to feel that, and I didn't like it one bit.
So, it might seem weird to say, but so far, I'm having a very happy anniversary! :-)