Tuesday, August 30, 2011

Most up-to-date safety data regarding Fingolimod / Gilenya / FTY720

Here is the latest safety information document last update on 7/2011 . There are certain people on the internet who are determined to link this drug to so called "new findings" regarding the issue of PML and Gilenya. They stand by their information citing the most recent changes to the drug data sheet updated on 7/2011.

Here is that document for you to read yourself:

Turns out if you search that document for "PML" or "Progressive multifocal leukoencephalopathy" you will not find any results.


This is why so many doctors are considering switching Tysabri patients to Gilenya if they have tested positive to the JC Virus or are nearing 24 months on therapy.

I hope that this will ease the minds of those of you looking for accurate, up-to-date information regarding this medication. Especially if you are considering this as a therapy of choice.

While there are other serious side effects related to the use of this drug, so far PML is NOT one of them.

You just can't make this stuff up

This morning I was driving my son to the bus stop 20 min. from our house (the school itself is over 30 min. away but the best in the county so we sacrifice convenience for quality). I dropped him off and it's still quite early as I head back. It was about 6:30 a.m. and inky dark outside.

I am driving along when a sheriff's car pulls out from a side street and falls in behind me. Up ahead I am planning to turn left and then right in order to get on the street parallel to where I am driving in order to be able to cross the river to get home.

As I'm preparing to turn left I look in my rear view to make certain the people behind me are slowing down too (it's just a habit of mine to check and see if I'm about to be rear-ended). I notice the cop had turned his headlights off and I thought this was pretty odd considering how dark it still was.

As I was completing my turn I caught sight of both headlights in my rearview at once. One was off and the other was on. The cop had a headlight out!

I completed my left and then right turn so I was then driving parallel to the deputy. I considered cutting back over and flagging him down to tell him about it, then decided it was a waste of time.

But I keep looking down each side street to my right to see if I can see his car. About 5 blocks later, there he is. He had turned left and was heading toward me, one headlight glowing, pulling into a parking lot and getting in a take-out line.

How could I resist? I, too, pulled in the lot and swung up on the right side of my now captive audience. I waved at him through his passenger window. He rolled it down, inquisitively.

"Hi! Did you know you have a headlight out?" I ask cheerfully.

"Oh...yeah...that..." he stammers "it happened on patrol last night and there's no place open to get it fixed yet."

I look at him sternly and say "You shouldn't drive it until daylight then, officer," adding "I'll let you off with a warning this time, but you'd better get that fixed!" and I actually wagged my finger at him.

How many times have you ever been given the chance as an average citizen to pull over a cop?

And don't you know I laughed until I cried when it finally dawned on me where this all took place.

We were in the drive-thru line at Dunkin Donuts.

Monday, August 29, 2011

These idiots don't WANT anyone to post anything truthful apparently

I reregistered and posted the info I had found sans links in rebuttal to the post with all the misinformation about Gilenya.

AGAIN my account was suspended. This time for reregistering and apparently acting as an "authority" by trying to post some actual facts instead of spewing garbage like the other poster.

I'd say "what a joke" but it's no laughing matter when they allow incorrect info to be posted on their site and disallow any rebuttal. That is total irresponsibility as a moderator in my opinion.

(Edited to add a link to the post where I discuss what this is all in reference to.)

Beware of HealthBoards the website.

The gloves are off. I'm warning all my MS friends, and especially those in search of information regarding Gilenya / Fingolimod / FTY720.

See my most recent post for the thread I found on healthboards(dot)com and my reply I had to post here as it was not showing up on their site. I was careful yesterday not to mention the site, but no more.

I got an email today saying there had been a reply to the conversation so I excitedly went to see if my post had finally "taken". But it did not. It was as if the 30 minutes of careful, thoughtful, informative reply never even happened. The reply to the thread was from the original poster who, as you may have guessed, was shocked by the PML information this idiot had warned her of with their misinformation.

I assumed my browser had just timed out trying to post the reply, so I quickly logged in so I could provide the original poster with correct info.

Here is what I saw (click to enlarge):

Really?? My account was suspended due to asking for links or criticizing someone? I ask you, dear reader, to go judge my response (in the immediately preceding post here: http://gilenya.blogspot.com/2011/08/setting-record-straight.html) and see if you think it was unjustly critical. And furthermore, I don't think asking for links to references that back up the garbage they are trying to spew is unreasonable.

To be fair, perhaps it was an automated process that suspended my account and perhaps a live moderator might be more understanding. However, my patience with their board and the idiots who are free to post their BS has worn down to a frayed thread. I'm done with it.

READER BEWARE! This is not the only message board or "group" out there that allows members to post misinformation being passed off as some kind of "fact" that they know to be true.

At least I will tell you when something I am saying is my own stupid opinion. And if I believe something to be factual I will at least do a little research and provide you with a link to what I've found so you can use your own noggin and judge for yourself.

Now I REALLY feel that a primer about how to research info for MSers is in order. Give me a few days to compose it.

Sunday, August 28, 2011

Setting the record straight

I have Google set up to send me email alerts when anything Fingolimod/ Gilenya related comes across the internet. Normally I might briefly check it out, but usually dismiss the stuff as old news.

Lately, though, there are so many people starting this therapy who are in search of accurate information to help them overcome their fear or at least give them knowledge on which to base their decision. When I see misinformation I can't help myself, I have to correct it.

I got such an email today that had a link to a discussion on one of the many MS forums. Someone wanted to know if anyone out there was on Gilenya.

A person who sounded for all the world like he knew what he was  talking about posted this:

I just attended a very intereting lecture on this drug last week. I had been considering asking my doctor about switching me in 2012; however after what I learned, Im not going to.

Gilenya is now being recognized as having some PML related issues, same as Tysabri....and the JC virus, which is what people get tested for before being started on either drug, makes over 50% of the candidates ineligible. I actually have the virus myself, they did blood draws at the meeting I attended. I got the results in 5 days.

The biggest risk besides cardio issues, is eye problems, making anyone who has had ON also riskier to take the drug. Macular Degeneration is an increased risk if you take this. The first dose and now they recommend the first 3 doses, should be done in a hospital or doctors office setting due to the risk of tachacardia- increased heart rate. This can cause additional problems down the road. The actual statistics which are available for efficacy arent that impressive and there is virtually no long term data available since the drug was released only this year for FDA approval for MS.

All of this is public knowledge if you do your homework, In my opinion the ease of taking the pill vs the risk, just doesnt cut it for me....but let us know what you think!

Naturally I had to respond. I went to all the trouble to create an account at this place, and it took me a good half hour to compose my rebuttal along with supporting documentation, and once I posted it's as if I was never there. Nothing showed up.

Not one to be easily swayed into giving up the discussion when I have invested so much time into composing my reply, I have decided to post it here. Maybe more people will see it and benefit from it anyhow.

Using my trusty "back" button on my browser I was able to return to the page on which I had composed the response and I'm copying/pasting it here...

My Response

I received a link to this discussion in a Google Alert email I have set up for all things related to Fingolimod / Gilenya. Usually I read them and dismiss them. I'm pretty familiar with the topic having been a part of the TRANSFORMS clinical trial and having just past my 4th anniversary on Gilenya. I don't know everything about it, granted, but know more than the casual observer or average MS patient.

The post by XXXX  however was troubling to me. Enough so that I felt compelled to create an account here on XXXX for the sole purpose of being able to ask for the sources for the information being provided.

First, where was this lecture you mention and who was providing the information?

Points you make that I disagree with:

1. Increased risk of PML. 
Where is the supporting documentation regarding this PML risk you speak of? You mentioned having your blood tested at this meeting for the JC virus. I believe you are mistaking the risks associated with chicken pox/herpes/shingles family of viruses with the JC virus. I have never been tested for the JC virus and I would think that if you were correct, that test would have been performed.  At the very least, if it were a new development as you say, my neurologist who also happened to be the lead investigator at my clinical trial location, would have gotten me back in there to test for this.

 From the Novartis website's Safety Information Guide PDF. (http://www.pharma.us.novartis.com/assets/pdf/REM/Gilenya_HCP_Safety_Information_Guide.pdf)

Patients without a history of chicken pox or without vaccination against varicella zoster virus (VZV) should be tested for antibodies to VZV.

I WAS tested (as were all clinical trial patients and now so too are current candidates for Rx) for the VZV antibodies.

2. Risk of increased heart rate and first 3 doses in hospital setting.
The risk is with a decrease, not increase, in heart rate and this only occurs with the first dose. Unless you have had an abnormal EKG or significant drop in HR that does not recover during the first 6 hours, there is no recommendation for 3 monitored doses that I am aware of.

From the published trial results:
There was a transient, dose-dependent reduction in the heart rate that developed within 1 hour after the initial administration of fingolimod, which is consistent with the findings in previous clinical trials.12,13,23 Mean maximal decreases were reached after 4 to 5 hours of 12 beats per minute in the group that received the 1.25-mg dose and 8 beats per minute in the group that received the 0.5-mg dose, with the changes starting to attenuate within 6 hours after the first administration of the drug. Most patients had asymptomatic reductions in the heart rate of less than 20 beats per minute. Mild-to-moderate symptomatic bradycardia after the first dose of fingolimod was reported in four patients who received the 1.25-mg dose (0.9%) and in three patients who received the 0.5-mg dose (0.7%). Symptoms resolved within 24 hours without treatment. There were no cases of syncope. Second-degree atrioventricular block was reported during the first day of treatment in four patients receiving fingolimod — three in the 1.25-mg group (0.7%) and one in the 0.5-mg group (0.2%). Two patients in the 1.25-mg group had mild symptoms (intermittent dyspnea and dizziness in one patient and chest pain and palpitations in the other patient), which resolved within 24 hours without treatment. No significant effect on heart rate or atrioventricular conduction was observed with continued administration of the drug. Increases in mean arterial pressure occurred in both fingolimod groups (3 mm Hg in the 1.25-mg group and 2 mm Hg in the 0.5-mg group) during the first 6 months and remained stable between 6 and 12 months.

.3. Macular Degeneration as a side effect.
It's Macular Edema (swelling of the Macula at the back of the eye) that is possible, not macular degeneration.

From the published results of the TRANSFORMS trial: 
Macular edema was confirmed on central review in six patients receiving fingolimod — four in the 1.25-mg group (1%) and two in the 0.5-mg group (0.5%). In three patients, the macular edema was asymptomatic and diagnosed by ophthalmologic examination. Five of the six cases were detected within 4 months after the start of therapy. The edema resolved within 3 months after discontinuation of fingolimod in four patients, was unchanged 1 month after discontinuation in one patient, and was reduced 8 months after discontinuation in one patient. Mean visual acuity and retinal thickness were similar across the study groups and remained stable over the 12-month study period.

4. The actual statistics for efficacy aren't that impressive.
I guess that's a matter of perception and opinion. I went from relapsing every 3 months for several straight years with Copaxone  not making any difference to joining this trial in August of 2007 and going 4 years with no relapse. My study was a head to head comparison with 2 different doses of Fingolimod (1.25mg or .5mg) with Avonex. There was no placebo. We were blinded to the real drug until the end of the study. We had to take a pill and do a shot once a week. Turned out I was on the .5mg Fingolimod from day 1. The results of that study concluded that, compared to Avonex, Fingolimod had quite an impressive increase in efficacy.

Again from the published study results:
This phase 3 study shows the superior efficacy of oral fingolimod over intramuscular interferon beta-1a. Fingolimod reduced the annualized relapse rate to a range of 0.16 to 0.20, as compared with 0.33 for interferon beta-1a, corresponding to a relative reduction of 38 to 52%

I didn't come here necessarily to correct errors I perceived as much as to find out if there is any truth to the statements being made If there have been changes in documented findings for this drug I have a great desire to know. If you can substantiate your statements with supporting links, I'd love to see them.

I just have a strong feeling that while you meant well some of your statements were incorrect.

Link to data that supports my statements (see charts/images included for side effects, etc.):


Now, I don't profess to be an expert and there is a slim chance that he/she was right and I am wrong because I'm using outdated material compared to the new data they could be referring to. But I DON'T THINK SO. I'm just sayin'.

It makes me mad as hell when people go off half cocked and start posting things they sorta recall from a meeting someplace and try to pass them off as the gospel truth. If you're going to make these claims at least provide some supporting documentation from a reliable source of authority. Don't just say "do your homework, the data is out there". 

There are people out there who have MS,  who are looking for some way to battle this insidious monster, and would like to not waste their time on reading stuff posted by idiots who have no business possessing an opinion.

Call me an idiot, but that's my opinion. :P

My next blog entry is going to deal with how to do research on the internet. It will be aimed at the average MSer who no doubt is experiencing some level of anxiety and wants to be reassured by the information they find online.

Friday, August 26, 2011

Could it finally be a MS relapse? Not earth shattering if it is...

I sat down with my pocket calendar and worked backwards, grabbing some dates from memory and some from my older blog entries. I think this has been going on for nearly a month.

It all started back around the beginning of  this month when I woke up one day and was sick to my stomach and so dizzy that I actually had to crawl to the bathroom to throw up. The dizziness scared the heck out of me (I've had it as a MS symptom in the past and DISlike it very much).

So I spent the day in bed  with a bucket beside me "just in case". I ate nothing and slept as much as I could. I took my temperature and it was absolutely normal. I sure felt like I had some kind of awful stomach bug but I didn't know you could have that without an accompanying fever. huh.

Turned out it was a 24hr thing. The dizziness was gone the next day along with the nausea, and I was back to eating. The only thing left behind in its wake was an overwhelming fatigue. The kind that pins you to the bed and won't let you up. The kind that increases gravity 10-fold and causes even the most mundane tasks to seem utterly insurmountable. I spent most of that week in bed, coming out only to force myself to do those things I could not avoid. We ate a lot of Tuna Helper and ham sandwiches during that time.

By the end of the week I was starting to get over the fatigue when I ended up having to make a trip to the ER. Not for me, but for my son who had been stung by a wasp for the first time and we all found out he apparently inherited not only his left-handedness from me, but my severe allergies to stinging bugs.

Maybe it was the stress of that day on top of the fatigue I'd been battling right after that awful stomach thing, but soon other little symptoms began raising their ugly heads. Try as I might, they refused to be ignored.

I was having intermittent numbness in my lower legs and feet as well as in my hands, coupled with burning pains and spasms. The severity of each symptom seemed to directly correlate to the amount of rest I had received during the previous 24 hour period.

Not wanting to admit that my beloved Fingolimod (a/k/a/ Gilenya) could ever let me down, I have been reverting back to my mindset of DENIAL as I remember from the first year or so immediately following my diagnosis back in 1999.

"Oh I'm just a little tired," and  "Maybe I'm coming down with something," were my two mantras looping through my head for the past couple of weeks.

But things are getting worse instead of better and demand my attention, refusing to be ignored.

That weird, buzzing, funny-bone-wacking sensation I experience for three months last summer (and despite extensive testing, no cause could be found) has mysteriously returned. This is such an odd thing I can't imagine even doctors being able to visualize or understand just what sensation I am experiencing. The closest I can come is this: I suddenly, randomly, and with no forewarning intermittently experience this odd sensation where my leg meets my body, at the groin area that feels like your elbow does if you wack it horribly on the nerve. There is ferocious buzzing and tingling while the surrounding muscles contract in a fit of spasms. My leg will contract and go out from under me.

So now I know right where my cane is after all these years. Within easy reach, that's where. I have come close to falling a couple times in the past few weeks because of this weird buzzing groin thing yanking my leg out from under me, so I'm not taking any chances.  I still see the scar from the gash I got last time I fell on my face every time I look in the mirror. I don't need to kiss the ground again, thank you.

The buzzing groin was an enigma last year. The clinical trial people pooh-poohed my questioning of whether or not it could be MS, and my primary care doc wore himself out dreaming up new ways to figure out what was going on. When an x-ray, a CT and an ultrasound revealed my only problem was that I was full of crap (literally, I had a constipation issue that amplified the groin buzz issue) I drew the line at getting the upyerasscopy.

Later, at the first neuro visit I had since exiting the study, Dr. Whosenameiforget told me it could DEFINITELY have been MS related and when I said it was worse when I was constipated he nodded, saying it made sense. There are nerves that travel through that area that come out of the spine, go through the groin and down the leg. With a full lower intestine and colon, the pressure placed on the nerve would be increased. He could easily see how it was a nerve thing and most likely MS.

Not to mention the fact that last year it mysteriously disappeared after never showing on any diagnostic test and was gone completely after 3 months... coincidentally the length of time it normally takes me to recover from a MS attack (if memory serves me).

Referring to my pocket calendar, let's see what else has been going on...

  • Eye twitching but I get that a lot anyhow if stressed or tired or mad (if you think you've ticked me off but don't know  for sure, just look me in the eyes. You can bet I'm NOT winking at you!)
  • Itching. Itching on my head, neck, side of torso, middle of my back. And never all at once, and never satiated by scratching. Back before the trial I could always tell when a new flare was coming on and guess the location of the lesion within several inches because of where the incessant itching was located.
  • Numbness in feet. Sort of feels like I have rubber gloves on them. Can feel cold/hot, but not especially fine sensations.
  • Tenderness in my left armpit and across the collar bone like I imagine where parts of  my lymphatic system reside.
  • When I lay down to go to bed at night my legs start jumping and twitching. It's a weird feeling. I can tell when it's going to happen because sometimes I get this stinging sensation like an ant bit me somewhere on my upper thigh or hip, and then within seconds my leg will jerk. If I wasn't so overly tired and wanting to go to sleep I might be amused and entertained by it, but mostly I find it annoying.
All in all it's a really wimpy list of symptoms, none of which are so earth shattering that I feel a need to go lie in a 8 foot MRI tube and get shot up with contrast dye to have them just say "yep, it's MS".

Besides, all they'd do is offer me steroids and I am so much happier to deal with these minor annoyances than I would be to deal with the roid rage I go through every time. Besides, that stuff makes me eat like there's no tomorrow and I INVENT meal names just so I can eat 6 times a day. "Oh! Look at the time! It's almost Linner! Better hurry and fix it or it will soon be time for Dinner and before you know it Dineakfast!" nom, nom, nom. And the acne, and the camel hump (NOT toe, thank you.), and the insane way my brain won't shut up, and the insomnia, and the weird taste in my mouth, and the unquenchable thirst, and the uncontrollable urge to clean. No thanks.

What I AM going to do is keep documenting my symptoms as this progresses, go see the doc if it really gets out of hand, and then on Sept. 28th when I go see my neuro I will bend his ear about all of this.

I have talked to a couple other folks in the Fingolimod trials who have definitely had relapses while on the drug and they have said what I suspected... you know you are having a relapse but it feels as if Fingo is keeping it in check. Like if not for the drug you might just explode into one of those horrible attacks that knocks your junk in the dirt.

If this IS a relapse and I'm going through the worst of it now, then I can handle it. I have not lost my gratitude for the drug, that's for sure. If anything I know for SURE it's working now. To go with no relapse for all this time could have just been a fluke. To have an attack and have it be so muffled as to leave me wondering if it really IS one, well, that to me speaks volumes about the power of Gilenya.

Saturday, August 20, 2011

Another Normal Boring Day - 4th Anniversary on Gilenya!

Today marked the 1460th pill I have taken since August 20, 2007. It's been 4 years since I started this study and I'm happy to report I spent a normal, boring, uneventful day much like anyone else I know. Totally UNlike the days I spent leading up to this trial.

If you had told me 4 years ago that things COULD get better and that I wasn't necessarily on a slippery slope leading to total disability from MS, I would have maybe laughed at you. Then again maybe not as my sense of humor was severely lacking from constantly being beaten down by my MS symptoms. I didn't laugh at much of anything back then.

Today, 4 years later, here is how I spent my day...

I got up at 9:15 after laying in bed watching TV for a while, deciding if I was ready to fight my right hip which has decided to remind me that I'm 50. They say you're only as old as you feel and most of me feels 18 but that stupid hip wants me to be eating prunes, sitting in a rocker knitting a shawl because it's a bit chilly in here. So the hip won out for a short while, but then I was up and making coffee.

I checked email, took my pill, got dressed, fed the cat. All boring stuff.

Note how taking my pill is nestled nonchalantly between two other mundane normal activities. That does not go unnoticed by me. It's been four years, but every day when I pop that pill out of its blister pack I am amazed that I am fortunate enough to be JUST taking a pill.

Used to be my morning went: get up, eat breakfast, get dressed, FRET OVER MY SHOT, fiddle fart around, PUT THE SHOT OFF, run errands, do other stuff and finally some time before bed, DO THE SHOT. It was the least favorite part of my day and was always dramatic and stressed me out.

But I digress. I took my son to the shoe store to get his back to school tennis shoes and since they were having a BOGO sale (well actually BOGOHO but that doesn't sound like something you should say in mixed company. The second pair was 1/2 off, suffice it to say) I found myself trying on high heels. My son was totally distressed about it. He said "that's not YOU, Mom! You look too weird! Take them off!!" And I said "Why do they not look like me? I think they're cute!"

His response? "You are flip flops and sneakers, Mom, not high heels." All I can say is he has only ever known the MS me and not the younger healthier me who loved to wear heels. I did end up putting the heels back on the shelf and got a Hello Kitty purse for my granddaughter instead. The purse will get more use than the heels would have, but the point is that it was a day where I actually dared to think it might be possible.

There have been so many things that MS has stolen from me over the years that even something so simple as putting 2 shoes on my feet in a store and standing there, not falling down, seemed like such a major accomplishment. Sure, maybe I'd look silly in them and I would never buy them, but the feeling I got of knowing I COULD if I wanted to...well that was priceless.

I also went to the parts store and carted the old battery from the lawn mower inside and exchanged it for a new one which I carried out and plopped in the trunk. Another boring, normal thing most anyone might do. Unless they walked with two canes like I used to. Those days may be fading farther and farther into the past but the memory of those times, and the realization of what a gift I have been given is always right near the surface of my mind.

People who have never know illness, or disability can maybe never fully appreciate the simple things. But once you have been there, if you are ever blessed with a new taste of normalcy, you will relish the little moments.

I felt the hug of my son today as he came in to see if I was okay after I had napped for a couple hours. There was no numbness as he wrapped his arms around me.

There was no excitement in my life today. It was boring and normal and just another day. Thank God I am so blessed. Normal is the most wondrous feeling of all.

Here's hoping for another 4 boring years. :)

Tuesday, August 16, 2011

Reminiscing about Recapping...

I was just searching my blog for when it was that I regained the ability to jump and run (in short bursts, no marathons) and I happened on a post that listed my pre-trial symptoms and how I was doing at the one year anniversary of starting the TRANSFORMS trial for Fingolimod (now Gilenya).

I thought it was worth drudging it up again for anyone searching to see how I've done on the drug, so here goes:

Clinical trial start date: 8/20/07
Starting symptoms:

  1. Numb legs.
  2. Severe burning in both legs from knees down.
  3. Unable to walk the grocery store (used the electric cart)
  4. Walked with a cane or often 2 canes.
  5. Unable to run, hop, jump.
  6. Severe panic attacks that necessitated use of Xanax as needed.
  7. Depression.
  8. Spasticity in arms and legs.
  9. Extreme fatigue coupled with insomnia.
  10. Bladder and Bowel *issues*. That's all I'm saying.
(there may have been more symptoms but I forget).

At one year anniversary:
Change in above symptoms:
  1. My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).
  2. Same thing with the burning -- only upon overdoing it.
  3. I can walk the entire grocery store and even PASS other slow pokes while doing so.
  4. I do NOT use the electric carts or the blue parking spaces.
  5. I don't know where my cane is.
  6. I can run across the yard, I can hop on both feet or either foot, I can JUMP!
  7. I haven't had any Xanax in at least 11 months.
  8. I'm no longer depressed. (I never took any medication for it either).
  9. My arms and legs still have some occasional spasticity.
  10. I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.
  11. The insomnia thing I still have some trouble with. Some nights I fall right to sleep, other nights I go to sleep and wake up a few hours later, and some nights I don't fall asleep until the wee hours of the morning. It all depends. I adjust my naps accordingly.
  12. Thank God the bladder and bowel issues are over.

So now, three years after that update as I approach the 4 year anniversary (8/20/11) of my start date, I can say the only things that have changed may be that I no longer have insomnia and the spasticity in my arms is totally gone and the spasticity in my legs is more of a morning stiffness which I may or may not have had despite the MS since I am *getting up there* in age.

I didn't really remember just how bad I felt getting into this trial. The mind tends to make us forget the lousier parts of our lives so reading that back over I was kind of shocked into a vivid memory and I can truly say that life with MS before this drug was pure misery.

I'm all for living a healthy life and trying to do as much as you can for yourself without the use of pharmaceuticals, but when you are up against a wall and suicide is looking like an option, drugs don't look so bad. Gilenya has my respect, gratitude and admiration. Without it, I can honestly say I probably wouldn't be here.

Friday, August 12, 2011

So much good new I just may burst!

So much has been happening lately and all for the good. Since my weird illness last week (flu-like symptoms followed by a solid week of severe fatigue), I have bounced back and feel good as new.

I got a call Wednesday from the Gilenya Patient Guide Network who I will be working with to reach out to MSers and physicians interested in learning about Gilenya. I guess I and other Patient Guides will be putting a real live face to the numbers behind all these clinical studies. People will get to see me up close and tell if I've grown a third eye or a tail from being in the trials and judge for themselves if it sounds like I am genuinely enthusiastic.

Anyhow, the call was to let me know the training I must first attend has been tentatively scheduled to take place "somewhere in the midwest" and either mid-September or beginning of October. They will fly me there, put me in a motel, feed me and drive me around if I talk about myself.

You could have told me 10 years ago that I would be flying all around the country, all expenses paid, just so I could talk about myself and you'd have been covered in coffee or pop or whatever I was drinking at the time as I sprayed it all over you when I burst out laughing. The thought of it still makes me go into uncontrollable giggles.

But it's a serious subject and really, if I can let people know just how this drug has changed my life -- for the better I might add -- then I will finally be doing something meaningful that benefits others outside of my immediate life circle. That's awesome.

So I alternate between giggles and goosebumps but it's all good.

I thought that was enough awesome news for one week, but not so. Today I check my email and see that my clinical trial nurse, Yasmeen has been trying to reach me unsuccessfully by phone. I have a POS cell phone you can't even text on and certainly doesn't have a touch screen or a data package, but it gets me by. Except if I am more than 10 feet from it when it rings. Five rings is all you get before it goes to voicemail. I gave up running for it a long time ago. And so I get messages.

Sometimes I listen to them, sometimes I slack off for a while. Apparently I've been slacking because Yasmeen said she'd left a voicemail and was worried I had a different number and she didn't know it. So I called her.

She had a stack of paperwork that Novartis had recently dropped in her lap regarding my cyst and it's aspiration, along with my concussion from when I fell on my head at the fair last March.

"Jeri! You're falling apart!" she exclaimed. "I certainly hope you are feeling better!" I reassured her that for the time being I was in one piece and semi-functional.

She said she was calling because someone who coordinates the MS clinic had contacted her and said I had not received the results of the blood work they had done back at the end of June so she offered to call and go over it with me.

"Perfect." was all she said, and that was that. I can cross that off the old worry list.

Then on to the other reason she called. Novartis is going to be doing a Phase IV trial to follow earlier trial patients for long term observation. I will receive the same quality care and testing, plus FREE GILENYA for FIVE YEARS!

She said recruitment has not yet begun but as soon as it does she will be calling me. She's confident her study center will be one of the ones included in the trial as she has 6-8 patients who would be wanting to participate.

That would give me 5 more years of not worrying how I'm going to pay for this stuff while also trying to get my act in gear to figure out SOMEthing to do about my lack of health care coverage.

Coincidentally I went to bed last night staring at the ceiling wondering what the future held for me and how I can solve my healthcare dilemma and today I wake up to yet another prayer answered, even if only for a short while. Someone upstairs is watching my back for sure.

Wednesday, August 10, 2011

Breakthrough multiple sclerosis DNA study could lead to new treatments - HealthPop - CBS News

And interesting article that a friend shared the link to. Maybe we will eventually find out what the cause is and maybe find a cure. It would be cool to see in my lifetime...

Breakthrough multiple sclerosis DNA study could lead to new treatments - HealthPop - CBS News