Monday, April 28, 2008

Sweet Sixteen

I just did my weekly shot. For the first time, I had a gusher. When I pulled the needle out this thick, dark red, nearly black, goo oozed out of the hole rapidly, scaring the beegeebers out of me. I hate horror movies and look away when I see that sort of thing on the screen. Can't look away when it's your own blood and someone's got to do something. I pressed down really hard with my cotton ball and didn't take it away until it got to the point where the cotton ball was sticking to my leg.

All this got me thinking. I am SICK of this once a week shot -- especially because it's probably just steril water I'm stabbing myself with anyhow -- and I'm sure there are many people out there who also have to stick themselves daily, weekly, several times a week, etc. and you are all hoping this Fingolimod will free you from your needles the way the 60's freed women from their bras.

So I dared to peek at the calendar. To see just how many more times I'm going to have to squirm and quiver and have the "talk" with myself about how "you just have to buck up and do it" and all that. And to my delight, I was rewarded with the number 16. Only 16 more times do I have to get it out of the fridge and wait for it to warm up. Only 16 more times to try for a good spot and not hit a gusher or a twitcher. Only 16 more times to have to waddle across the room with my pants around my knees to get the cotton ball I set down "over there".

16 sounds sweet to me! How many MSers out there can actually say "I only have this many shots left to do and I'm done."? The part that has always sucked about the needles is the thought that, as long as I am breathing, this is what I have to look forward to.

I know I make it sound dramatic and really it's not that bad, but it's annoying if nothing else.

So today I celebrate Sweet Sixteen. I'm not happy to see the trial winding down and entering it's last downhill run, but I will never look back on any of this and say "ya know...I miss doing those shots." Been there, done that, have the track marks to prove it. It will be part of my history. Can't wait for that day!

Wednesday, April 16, 2008

Oral Drug, FTY720, Reduces Disease Activity in Multiple Sclerosis

There could be no better news, in my opinion! I've waited a long time for some official update on this, and we finally have something in writing from the American Academy of Neurology:

CHICAGO – A drug that can be taken orally reduces the number of attacks people with multiple sclerosis (MS) have, according to research that will be presented at the American Academy of Neurology 60th Anniversary Annual Meeting in Chicago, April 12–19, 2008.

“All of the current treatments for MS must be injected, so having a pill you can swallow with a glass of water would be a welcome improvement for many people,” said study author Giancarlo Comi, MD, of Vita-Salute San Raffaele University in Milan, Italy.

The results reported are from an extension of a six-month study with 281 people with relapsing MS, two-thirds of whom took the drug FTY720 (fingolimod) and one-third of whom took a placebo. After six months, those taking FTY720 had more than 50 percent fewer relapses, or attacks, than those who took the placebo. At that point, all of the participants could enter an ongoing extension of the study where all would receive the drug.

A total of 173 people have finished three-years of the study. Continuous use of the drug led to sustained low relapses, with more than 67 percent of the participants remaining free of relapses after three years. In addition, the inflammatory activity associated with MS, as assessed by MRI scans, remained low, with 89 percent of patients free of disease activity and 75 percent of patients free of new or newly enlarged lesions.

“The first line treatments for MS, beta interferon and glatiramer acetate, reduce the relapse rate by only about 30 percent, so this is a significant development for people with MS,” Comi said.

The most frequently reported side effects of the drug were headache, fatigue, flu, and cold symptoms.

FTY720 is an immune-modulating drug that binds to a receptor site on immune cells, sequestering them in the lymph nodes. As a result, FTY720 reduces their ability to cause damage associated with the symptoms experienced by people with MS.

The study was supported by Novartis Pharma AG, maker of FTY720.

The American Academy of Neurology, an association of over 21,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, epilepsy, multiple sclerosis, Parkinson’s disease, and stroke. For more information about the American Academy of Neurology, visit

Now, I have been saying all along that the only reason last year's reports said that so many people "remained relapse-free after 2 years" was probably because they had only been on the drug for 2 years to that point. Now, a year later, 67% are relapse-free after 3 years!

I was at a point where I could not have imagined being relapse free for more than 3 months before I started this trial. Next month will be a YEAR since my last flare. I can't even fathom this luxurious vacation from the ravages of MS lasting 3 times that long.

True, I had a pretty rough time with upper respiratory infections this past winter, but that's a sacrifice I am more than willing to make.

I picked the right study to join is all I can say.

Monday, April 14, 2008

Co-payment for MS drugs going sky high

According to the New York Times article yesterday, insurance companies are no longer charging a flat co-pay of $10 or $20 for the expensive disease modifying drugs many MSers have come to rely on in order to reduce relapse rates and maintain some level of quality of life.

Instead, when they visit the pharmacy now, they may be hit hard in the pocketbook. Co-pays are now sky rocketing to 20-33 percent of the drug cost with a maximum charge of $325 per prescription. For the patient, this means hundreds of dollars just to maintain their health every month.

Read the article here.

I am terrified about what will happen when this Fingolimod trial ends and I no longer get my medication for free. I strongly believe that the medicine is the reason for this long period of remission that I am enjoying, and the health care system is putting a price on that for me. I know it will be out of my reach once it has gone to market and I am forced to pay for it.

Sadly, I guess I had better enjoy the rest of this year and the extension phase as being what will surely be the best years, health wise, of the rest of my life. After they require me to pay, I won't be able to afford remission from this awful disease.

Not only does this new Tier 4 pricing affect MS drugs, but drugs for many other expensive illnesses such as cancer, Rheumatoid Arthritis, Hepatitis and many others.

This past weekend I was cleaning out the top drawer of my dresser where I have long kept any and every pill I've been prescribed for MS symptoms. I also kept the info sheets that came with these meds, and I found a sheet on Copaxone from 1999. The price was on it. $896. The last time I got Copaxone was a month before starting this clinical trial in 2007. The price was $2700. It is inconceivable to me that this drug could have cost so much back in 1999 and to soar to nearly triple that cost in 8 short years is purely greed-driven evilness. To profit so blatantly from our suffering, and to dangle the promise of a drug that could help over our heads and just out of reach is nothing short of inhumane.

When the pharmaceutical executives become ill with MS or Hep C or cancer, will they THEN realize what suffering their evil greed has caused those less fortunate? Probably not, but I can't help myself...I want to see them suffer.

Sunday, April 13, 2008

Paint like Jackson Pollock

Just go to and paint to your heart's content. I did the example above with just my right handed mouse -- and I'm left handed!

It's so fun to do and all you have to do is press the space bar to clear the page and start over. Oh, and each time you click the mouse you get another paint color. The faster you move the mouse, the thinner the line. Stop and you get a big dot.

I "saved" my work by using a screen capture utility, but you may be able to do the same by pressing the "print screen" button which can be found on most standard keyboards above the "insert" key which is above the "delete" key on the keypad just to the right of the main one.

Comments about art lately have prompted me to share this. I'll work my bigger art post around in my head a while before committing it to posterity here. Give me a day or two to mull it over.

There is much to be said about artistic MSers adapting to their new limitations. I'll share some of my techniques and pointers for doing things and perhaps you will share yours in the comments.

Until then, have fun painting like Pollock. :-)

Saturday, April 5, 2008

When Blogs Collide...

...good stuff is bound to happen!

I have great news! I have wasted an entirely perfect Saturday sitting in this awful non-ergonomic chair compiling the frankenstein of all blog aggregators. If you don't know what that is, don't worry. I wasted an entire day on it and still don't really know myself.

All I do know is that fancy long list that Lisa at Brass and Ivory provided has now been feed into a blog displaying machine and all the posts are there from everyone!

The blogs are in tidy folders labeled "ABC", "DEF" and so on. That way, you can find a particular blog to read their posts easily, or you can read them first come first served with the newest from anyone who's blog is listed showing on top....all mixed up like a Blog Salad, or a Blog Jelly Roll or something. (Can you tell I forewent dinner to do this?)

Here's the link to the MS Blog Reader: (new window)

Before you go gettin' all "she did the new window thing on me" about the new window, let me explain. I'm going to tell you a couple of things and rather than try and remember them, you can read the tips here while simultaneously viewing what I am talking about there. Make sense now? Are you gonna take back that "new window" thing you were thinking? Okay then.

Firstly, you may or may not see a "log in" box at top right of the page. I'm flyin' by the seat of my pants on this installation because there's very little documentation (read "instructions") so I have no clue what I'm doing or what to expect.

I don't see any advantage for anyone but me to have to sign in as I can access the admin area when I am logged in and get to decide what blogs get shown, etc.

Hitting the "Refresh" button will cause the Aggregator Alligator to go searching the swamps for fresh blog meat (posts) so be prepared to wait and wait as it take a while to troll 181 blogs. Not near as long as it took to list them, tho.

Beneath the title to each post you will find some light gray type (unless I have messed with the CSS again and it's no longer light gray) that says when it was posted and by whom it was posted. Immediately following that are the words "tags [edit]". This is where you can get all interactive with it. You can edit the tags and say what you think are meaningful labels for what you have read. Somewhere down the road it will help others sort things out and find things they are searching for more quickly.

And last but not least...the most exciting function! You can search the whole MS blog world from this one place for anything you want to find. I tested it out using the term "Fingolimod" and while it returned gobs of posts from moi, it also returned some I had not read from other blogs.

So, go give 'er a whirl and let me know what you think. I can take it.

OH yeah, if you don't see your blog there it's either because your blog is by invite only and I wasn't invited (in which case pfffffffffft on you!), or for some reason my aggregator just said "sorry" and refused to add you, or you don't have an rss feed so I can't add you. If you have an RSS feed and want to include it, or any ideas that you want to brainstorm, contact me at signsintime at gmail dot com.

Go read!

Possible Side Effect of Fingolimod?

Yesterday marked the 9th month mark since I quit smoking. I quit in anticipation of starting this study and after I read the Informed Consent document. It stated that "slight asthma" could be a possible side effect as FTY720 caused extra cells to form in the bronchial tubes. (I'm paraphrasing from an impaired memory, here, so take that with a grain of salt).

Anyhow, me being the hypochondriac that I am, I fully anticipated gasping for air upon taking my initial dose. In preparation for that event, I did something miraculous. I put my pack of cigarettes in the trash can on July 3rd, 2007 before I went to bed and didn't wake up July 4th and frantically go dig them out from under the supper garbage to brush them off and suck down the calming fumes.

I have not had even one butt since July 3rd due to my wild imagination scaring the bejesus out of me. Smoking, it turned out, was something I could control after all. It just took a really scary scenario to plant itself in my head to make me realize I really don't need them. are wondering what the possible side effect is, I guess. That's why you have put up with this post all the way to here.

Well, I have gained some weight. Probably 15lbs. since putting down the cigarettes and picking up the Fingolimod. The reason I even mention the cigarettes and quitting is because I know that quitting smoking tends to make one replace the contents of the hand that once held a cigarette with some sort of food instead.

My cigarette replacement is a Dove dark chocolate individually wrapped single serving candy bar square. At first I worked myself up to a half a bag a day habit before I realized what I was doing and had to back away from the chocolate.

Now, 9 months later, I rarely even think about cigarettes and I have a live-in boyfriend who smokes. (Albeit outside, but he smokes.)

So I am trying to approach this analytically. I have always weighed between 100 and 110. I'm now up to 125 and would like to ease some of the extra baggage back off due to not owning a shoe horn large enough to help me get my pants on. And I have clothes older than my 26-year-old, so I'm not going out to get an entire new wardrobe when I still own stuff that's perfectly good.

I am trying to just limit my intake and pay attention to how many times my hand follows it's well worn path to my mouth. The weight doesn't seem to be showing any signs of melting off, tho. Not like it used to when I was younger.

So, is this possibly a side effect of Fingolimod? To create an insatiable craving for Dove chocolate that contains 100 calories yet puts 8 oz. per bite directly onto your stomach and hips. How can that be possible? Why is my body hording these calories in the form of fat?

My mother says I need to keep the weight on (but not gain any extra) just in case I have a relapse. Like the extra fat will sustain me though feeling awful and not wanting to eat...or live.

I'm blaming it on the medication. Not the chocolate.

Any other Fingo Heads out there gaining any weight? I'd be curious to hear if you are.

Just so you know, I consider "one bite" of chocolate to be the same as this gal's "one bite" of Vanilla Wafers:

Fingolimod update, chicken concoction & the fate of the wrens

I swear FTY720 has changed my life. I have gone from the dramatic "get me to the hospital for steroids NOW!" kind of existence to "my back hurts from planting flowers last weekend" normalcy. It has been 11 months without a relapse (I think. It's been so long I lost track -- another exciting revelation to me). I feel like I don't deserve to be blogging about MS because I don't have anything to report. I don't even have another neuro visit until May 19th...and I don't anticipate calling him before that.

I really expected that I would be having a relapse right now. Pre-Fingolimod I would most likely be brewing up a good leg-numbing, all out miserable attack after last week. You see, the things that have always precipitated relapses for me are 1) illness and 2) stress. While I've been in great health (knock on wood), I had a stressful *event* last week.

It all started with My Therapist. Formerly known as Cali, she is now and will forever be Little Kitty. That's "as opposed to Big Kitty whom she is smaller than...for now." When/if she grows larger than Big Kitty, there might be some confusion for outsiders but we in the family all know who is who as do the cats. But I digress.

On the fateful night of The Incident, I was in the kitchen concocting a chicken dish for which I had no recipe and was trying to just recall what that Campbell's Soup commercial looked like it probably contained. For any of you who don't know better, you probably think I'm some great chef that I could attempt just making something up like that. Quite to the contrary. My boyfriend insists I could screw up take out.

As I said, I was in the kitchen with chicken. (Say THAT three times fast.) The cats were out in the back yard. Little Kitty, who is a shameless begger and has no manners, was whining to come in the sliding glass door. I shooed her away telling her to go play.

Well, she went to play the only way cats know how. Go off and torture something. "She TOLD me too, after all," Little Kitty would say in her own defense if placed on the stand. That's IF we tried cats for murder. And IF cats could talk. And IF her lawyer was crazy enough to expose her to cross examination.

Within two minutes from being shooed from the back door I had returned to my chicken concoction only to hear a wren loudly scolding Little Kitty outside.

The wren is (well, was) one of a pair that had nested (stupidly) on my back porch in a nesting box that I had (stupidly) neglected to remove so they wouldn't after getting Little Kitty. They come every year (probably a new generation each time or those parents had to be pushing 8 or 10 by now) and nest in this cardboard box that I had fastened to the porch using box tape and nails. We used to love to watch the babies being raised and leave the nest. I have had the honor of witnessing the first flight of 3 of the many generations reared in that box.

Big Kitty, who tortured his fair share of lizards when he was younger, has become one of those fat, lazy cats who looks longingly at the wildlife skittering around him, knowing full well that if he got up to give chase he'd do nothing but expend energy he doesn't have. I don't worry about him and the critters outside.

Back to the story. I heard the wren screeching at the cat and suddenly the noise stopped, cut off mid-chatter. Uh oh. I ran to the slider and sprang out the door. (something else I couldn't do, pre-Fingolimod). There was L.K. with a brown rag doll in her chops, running away from me. I gave chase (same "pre-Fingo" thing again).

We ran the length of the yard a couple times (the guy who evaluated me for my last EDSS would be so proud) and my boyfriend (who happened to glance over and see me chasing the cat) came out of curiosity (and because he needed a smoke) to watch the antics. Then he saw why I was after L.K. and he took over the chase. He didn't catch her either. We just gave up because it was quite obvious the poor little wren was dead.

I was beside myself. But I figured the other parent would just have to be more careful and work her/his tail off to take care of those babies and that everything would be okay.

I was completely unaware that the bird in my cat's mouth had been recently widowed.

The babies peeped for a long time.

The next morning I went to the bait shop and bought meal worms and red worms. I cut them small for the babies using an Exacto knife. I am extremely squeamish and so that's the main reason I don't fish. I don't like live bait and I don't like touching the fish if I happen to catch one. And here I was dissecting worms (blech).

Alas, I couldn't keep them alive. Two of them (there were five total) passed on before I could convince my elder son (26) to take them from me and make me believe he raised them even if they died on the way to his house.

I cried that night. I so loved to watch the birdies have their families and raise their babies. My murderous cat put an end to that and came in that night wanting to curl up in my lap like all was well and "what the heck are you crying about? Hey, did you see the size of that bird I got?? It was a beauty, eh?"

So, usually, by now, I'd be getting up one morning not feeling my feet again. I know the drill. I've been cringing; waiting for the other shoe to drop.

But nothing. I managed to weather a traumatic event with nary a hint of a relapse. I did sleep a lot the next day, but that's from all the exercise I'm not used to.

The chicken dish ended up looking awful, but it did taste pretty good.

Here's my "recipe".

Chicken Gook (rhymes with "cook")

You will need:

Some chicken
assorted spices
onion, chopped
broccoi, floretted
Campbells cream of chicken and herb soup
a can opener
2 pots
2 baking dishes
pot holders,
someone who dares to eat it.

Boil some chicken. Add some spices to the water while it's boiling. Whatever you have.

Then, save some of the greasy water from the top (about a cup) and pour in a baking dish.

Pick the chicken off the bones and cut into bite size pieces. Chop up a little onion and toss it in.

Add a can of Campbell's cream of chicken and herb soup.

Boil a half a bag of noodles according to directions.

About half way through, add a bunch of broccoli florets to the water and boil them too.

Drain it, add noodles and broccoli to baking dish.

Try to stir.

Transfer everything to a bigger baking dish, then stir.

Bake at 350 degrees until the hamburger you made for your boyfriend who was having no part of the chicken stuff is done.

Serve to your unsuspecting family.

Get your 9-year-old seconds. Stick your tongue out at boyfriend.

I guess I can't begrudge the cat for having wren when we were having chicken.

Fingolimod allows other things besides MS to be the traumatic events in my life. :-)

Friday, April 4, 2008