If you are reading this and you have come from investorvillage.com it's no doubt due to all the back and forth posts made today that stemmed from an original post on your website that linked to my blog. I found the link by tracing the number of hits to my blog back to the post on your site.
I went there today and signed up so that I could provide information about Fingolimod as one poster had asked about it. I didn't realize I was wrapping a hornets nest around my head. I was called a liar by one of the first people to respond and called out on the carpet by someone about my casual remark about the recent "study" of only 21 people that showed cessation of Tysabri may have something to do with an increase in the number of subsequent relapses in patients with RRMS. I agree, I should have left that info out all together as it had nothing to do with the info I came there to provide and I don't take it, or know anyone who does. Sorry for that! Sincerely.
That said, I didn't appreciate being called a liar. Someone on that board insisted that all Phase III studies of Fingolimod are 24 month studies. They are wrong and I should know that better than anyone merely investing -- I'm the one who's got the schedule of testing and the protocol for the next 12 months. I know at the end of the 12 months, if they are going to continue the study, I will have the option of staying in, but it's for 12 months. NO LIE.
I'm not an investor, I'm not a pharmaceutical company, nor am I a neurologist. I'm not pretending to be. What I AM is a person who has had relapsing/remitting Multiple Sclerosis for nearly nine years and I am currently in a clinical trial for a new medication. I know better than anyone else what it's doing for me. On that I am an expert. I was just trying to share. I didn't know it would explode the way that it did... I should never have posted.
If you're here because you are interested in the topic, please stick around and read the whole blog. There's lots of interesting tid bits in here.
If your here because you came to see if you could leave a comment and bash me, well, you're going to be disappointed. I changed my settings earlier and you can't do it any more. It seems some really childish people have way too much money in this world if they are investors who waste their time bashing some poor girl on her measly blog.
Now, back to my regularly scheduled witty self. For my regular readers, I promise I won't stray into that arena again. :-)
Saturday, September 15, 2007
Pinch me, I'm dreaming
On my Google homepage I have customized it to display current MS news feeds so I can stay on top of what's happening around the world that might have an impact on my health. Today one of the links was to this article:
Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing
The way I'm reading it is that Novartis, the old sly dog, bought the parent company of the people who were making Betaseron back when it was the MS drug du jour. That way they made the profit.
Well, now Novartis is dumping Betaseron on Bayer for a cool $200,000,000. They will no longer reap the profits from the sales of this drug. "Why would a company as big as Novartis make a move such as this?" you might ask. It's simple! They are expecting Fingolimod to be the new Gold Egg laying Goose! Why bother with the manufacturing of an injectable when it's going to be obsolete in another year or two and it's so much cheaper to manufacture pills?!
That single move by the pharmaceutical giant Novartis has left me more confident about the outlook for Fingolimod than and results of earlier trials have. Not to say I wasn't impressed before this, but why else could they be dumping Betaseron? It was one of the first MS drugs used in an attempt at disease modification. Many people with MS are still on this drug. It can only make money for whoever owns the patent and manufacturing rights. UNLESS it's become a dinosaur. Why dump one disease modifier that's already FDA approved unless you are sure about the new drugs coming out?
Maybe I'm reading too much into this, but if I am, I'm happily wandering in my own dream world, so please.... Shhhhhhh! Don't wake me up!
Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing
The way I'm reading it is that Novartis, the old sly dog, bought the parent company of the people who were making Betaseron back when it was the MS drug du jour. That way they made the profit.
Well, now Novartis is dumping Betaseron on Bayer for a cool $200,000,000. They will no longer reap the profits from the sales of this drug. "Why would a company as big as Novartis make a move such as this?" you might ask. It's simple! They are expecting Fingolimod to be the new Gold Egg laying Goose! Why bother with the manufacturing of an injectable when it's going to be obsolete in another year or two and it's so much cheaper to manufacture pills?!
That single move by the pharmaceutical giant Novartis has left me more confident about the outlook for Fingolimod than and results of earlier trials have. Not to say I wasn't impressed before this, but why else could they be dumping Betaseron? It was one of the first MS drugs used in an attempt at disease modification. Many people with MS are still on this drug. It can only make money for whoever owns the patent and manufacturing rights. UNLESS it's become a dinosaur. Why dump one disease modifier that's already FDA approved unless you are sure about the new drugs coming out?
Maybe I'm reading too much into this, but if I am, I'm happily wandering in my own dream world, so please.... Shhhhhhh! Don't wake me up!
Tuesday, September 11, 2007
National Multiple Sclerosis Society's commercial for raising awareness
Thanks to Annie, who commented on my last entry, here's a commercial I thought I would share with you:
Monday, September 10, 2007
Hey Novartis! Some name suggestions for you!
I just can't see an MS commercial on TV with beautiful people engaging in idyllic scenes of active living with the words "Fingolimod : Take your life back!" on the screen.
You guys at Novartis are great when it comes to making the medicine do what it does -- I'm not questioning you there! It's just that, let's face it, you don't have the best marketing sense, in my opinion. I mean, look at your pharmaceutical company's name. Novartis?? That sounds like the inflammation of some little known internal organ, sorry.
So, I've decided that I will lend you my many years of marketing expertise that comes from owning a printing and sign business and helping my customers think up catchy tag lines. Don't worry, I won't charge you (unless you actually use it and then this blog entry becomes Exhibit A in the lawsuit). Anyhoo...I've got a few names you could try.
Remember, you're competing with trendy names like "Tysabri" whose nickname has become "Ty" and everyone loves to say it. It's got to be something trendy, refreshing, and gives a hopeful feeling to those taking it without in any way implying a shred of hope. hmmmmm
MS-be-gone is out. Too much of an absolute statement however much we with MS would like to buy into it. I see lawsuits over that one.
Brighter Tomorrow has potential although it's currently being used as a name for an MS grant program I think. But what if we shortened it? Brittom? or Britrow? No... it loses it's positive impact and sounds like something you might find when cleaning a fish.
I know, how about we go back to the Chinese roots of the fungus? Maybe there's a name there to be had. Then again, considering the Chinese angle (in the minds of Americans, Chinese = recall) and the fungus angle (what's catchy about a fungus... unless it's the fungus you are catching?)
How about "Nerve-On, applied directly to the spine!" No, those commercials are so annoying.
I'm going back to what sounds good. Something that smacks of "vitality". Vitameatavegamin is out, I guess.
Seriously, tho... I like these:
Gold Finger (because that's what Fingolimod sounds like to me and it reminds me of James Bond).
Vitalease (combining "vitality" with "ease" as in "ease of movement".)
Proreverse (as in "I'm all for a reversal of my MS damage!")
Jerimod (just to throw my name in there for posterity.)
Anyhow, all I'm trying to do is show you big guys at Novartis that if you are thinking ahead in a positive fashion to the days after FTY720/fingolimod is approved, then you have to get on top of this now. Give us a name we'll be able to pronounce and be proud to say when someone asks us what disease modifying drug we are taking for our Multiple Sclerosis. Please don't keep the Fingolimod label, alright?
You guys at Novartis are great when it comes to making the medicine do what it does -- I'm not questioning you there! It's just that, let's face it, you don't have the best marketing sense, in my opinion. I mean, look at your pharmaceutical company's name. Novartis?? That sounds like the inflammation of some little known internal organ, sorry.
So, I've decided that I will lend you my many years of marketing expertise that comes from owning a printing and sign business and helping my customers think up catchy tag lines. Don't worry, I won't charge you (unless you actually use it and then this blog entry becomes Exhibit A in the lawsuit). Anyhoo...I've got a few names you could try.
Remember, you're competing with trendy names like "Tysabri" whose nickname has become "Ty" and everyone loves to say it. It's got to be something trendy, refreshing, and gives a hopeful feeling to those taking it without in any way implying a shred of hope. hmmmmm
MS-be-gone is out. Too much of an absolute statement however much we with MS would like to buy into it. I see lawsuits over that one.
Brighter Tomorrow has potential although it's currently being used as a name for an MS grant program I think. But what if we shortened it? Brittom? or Britrow? No... it loses it's positive impact and sounds like something you might find when cleaning a fish.
I know, how about we go back to the Chinese roots of the fungus? Maybe there's a name there to be had. Then again, considering the Chinese angle (in the minds of Americans, Chinese = recall) and the fungus angle (what's catchy about a fungus... unless it's the fungus you are catching?)
How about "Nerve-On, applied directly to the spine!" No, those commercials are so annoying.
I'm going back to what sounds good. Something that smacks of "vitality". Vitameatavegamin is out, I guess.
Seriously, tho... I like these:
Gold Finger (because that's what Fingolimod sounds like to me and it reminds me of James Bond).
Vitalease (combining "vitality" with "ease" as in "ease of movement".)
Proreverse (as in "I'm all for a reversal of my MS damage!")
Jerimod (just to throw my name in there for posterity.)
Anyhow, all I'm trying to do is show you big guys at Novartis that if you are thinking ahead in a positive fashion to the days after FTY720/fingolimod is approved, then you have to get on top of this now. Give us a name we'll be able to pronounce and be proud to say when someone asks us what disease modifying drug we are taking for our Multiple Sclerosis. Please don't keep the Fingolimod label, alright?
Thursday, September 6, 2007
If this gets approved, I'm in heaven!
I was just thinking about how nice it is that I only do a shot once a week. I'm sure those of you who haven't had a shot since getting their last boosters as a child would beg to differ, but for people with MS, shots are a part of reality. A necessary evil.
Since getting diagnosed in '99 I have had to stick myself on a daily basis (well, okay, my family knows that I fell off the shot wagon for a while and then got back on). Copaxone was the MS fighting elixir of choice. A tiny needle the goes only into the fat just beneath your skin. But the medicine it delivered was like battery acid. The stuff burned and there's just no way of getting around it.
At no time in the history of MS medications has a person been able to take a pill once a day that is designed to modify the course of the disease progression... until now. True, I can't pull the sheet out of the box and read about side effects or what not to take it with, etc., but I take my one pill a day and that's it. Well, except for that once a week shot, but who's counting? I do it Monday morning and by Monday afternoon I'm over it. It's done, gone, forgotten. For a week!
From what I have read recently, Fingolimod may even be able to repair previous damaged caused to nerves by multiple sclerosis. If that's the case, not only should I have fewer relapses to look forward to, but maybe I'll get some feeling back in my feet and not be quit so off balance.
It will be a sad day if, at the end of this study, Fingolimod doesn't get FDA approval. I will miss my little brown pill and all that it represents to me as a future that looks so bright.
For now it's looking good. No side effects and no relapses so far. You would probably say that two weeks isn't long enough to say whether it's making a difference in slowing the relapses, but consider this: I have been having relapses on a continual basis every three months for the last two years. I couldn't catch a break. Just when I would start to heal from one flare, another one would wash over me. Like an ocean of symptoms that threatened to drown me, I could get no relief.
My last round of steroids (which is all they can do for you to quiet down an acute attack) was back in June of this year. This is now September and I am having no signs of a new attack. All is quite on the MS front. I hope it stays that way, and with this medicine I'm pretty confident I will.
How nice it is to finally be able to get back to the business of living. Just having a regular life without constantly being nagged by your body that you have a disease is a nice thing. If Fingolimod gets approval I will be the happiest woman on earth. Well, the only request I would have would be to give it a jazzier name. Something like "Gold Finger" maybe? James Bond fighting M.S. -- I like the visuals.
Since getting diagnosed in '99 I have had to stick myself on a daily basis (well, okay, my family knows that I fell off the shot wagon for a while and then got back on). Copaxone was the MS fighting elixir of choice. A tiny needle the goes only into the fat just beneath your skin. But the medicine it delivered was like battery acid. The stuff burned and there's just no way of getting around it.
At no time in the history of MS medications has a person been able to take a pill once a day that is designed to modify the course of the disease progression... until now. True, I can't pull the sheet out of the box and read about side effects or what not to take it with, etc., but I take my one pill a day and that's it. Well, except for that once a week shot, but who's counting? I do it Monday morning and by Monday afternoon I'm over it. It's done, gone, forgotten. For a week!
From what I have read recently, Fingolimod may even be able to repair previous damaged caused to nerves by multiple sclerosis. If that's the case, not only should I have fewer relapses to look forward to, but maybe I'll get some feeling back in my feet and not be quit so off balance.
It will be a sad day if, at the end of this study, Fingolimod doesn't get FDA approval. I will miss my little brown pill and all that it represents to me as a future that looks so bright.
For now it's looking good. No side effects and no relapses so far. You would probably say that two weeks isn't long enough to say whether it's making a difference in slowing the relapses, but consider this: I have been having relapses on a continual basis every three months for the last two years. I couldn't catch a break. Just when I would start to heal from one flare, another one would wash over me. Like an ocean of symptoms that threatened to drown me, I could get no relief.
My last round of steroids (which is all they can do for you to quiet down an acute attack) was back in June of this year. This is now September and I am having no signs of a new attack. All is quite on the MS front. I hope it stays that way, and with this medicine I'm pretty confident I will.
How nice it is to finally be able to get back to the business of living. Just having a regular life without constantly being nagged by your body that you have a disease is a nice thing. If Fingolimod gets approval I will be the happiest woman on earth. Well, the only request I would have would be to give it a jazzier name. Something like "Gold Finger" maybe? James Bond fighting M.S. -- I like the visuals.
Saturday, September 1, 2007
Worrying myself sick
Is it really possible to make imagined things become real if you really, really believe in them? It didn't work for me when I tried it with Santa Claus or winning the lottery. But I do feel there is power in positive thinking.
For instance, I'm walking just fine these days and it is because I am doing well with my MS... or at least I think I am. Could it just be that because I don't have all the facts and I only perceive that I'm doing well that I am a walking miracle? If so, I don't want to know the results of all the MRI's I have had lately.
It could be that the reason they've been "lost" or never received by my new neurologist isn't due to miscommunication between hospitals, but rather I am a curiosity being studied by a team of doctors. Maybe they have seen my MRI's and know that I should be a vegetable confined to a bed, but realize that because I don't know this, I am still up and walking.
In that case, I don't want to know. I believe in the power of positive thinking because I have seen the power of negative thinking. I do it to myself all the time. I can talk myself into a panic attack quicker than you can say "OH NO!". And I even have this detached, analytical part of my brain that sits back saying "there you go again... you brought it on yourself."
If it's true that negative thinking can effect your health, then why can't positive thinking? Today I'm practicing "The Little Engine That Could" alternative medicine. I am going to feel better, and thus BE better, because....
I think I can, I think I can, I think I can.
Just between you and me, I'm sick of worrying myself sick and I think I'm going to give it up as a hobby altogether. If anyone has any great links about the power of positive thinking that they'd like to share with me, I'm all ears. Please post them as a comment.
For instance, I'm walking just fine these days and it is because I am doing well with my MS... or at least I think I am. Could it just be that because I don't have all the facts and I only perceive that I'm doing well that I am a walking miracle? If so, I don't want to know the results of all the MRI's I have had lately.
It could be that the reason they've been "lost" or never received by my new neurologist isn't due to miscommunication between hospitals, but rather I am a curiosity being studied by a team of doctors. Maybe they have seen my MRI's and know that I should be a vegetable confined to a bed, but realize that because I don't know this, I am still up and walking.
In that case, I don't want to know. I believe in the power of positive thinking because I have seen the power of negative thinking. I do it to myself all the time. I can talk myself into a panic attack quicker than you can say "OH NO!". And I even have this detached, analytical part of my brain that sits back saying "there you go again... you brought it on yourself."
If it's true that negative thinking can effect your health, then why can't positive thinking? Today I'm practicing "The Little Engine That Could" alternative medicine. I am going to feel better, and thus BE better, because....
I think I can, I think I can, I think I can.
Just between you and me, I'm sick of worrying myself sick and I think I'm going to give it up as a hobby altogether. If anyone has any great links about the power of positive thinking that they'd like to share with me, I'm all ears. Please post them as a comment.
Monday, August 27, 2007
Is it Fingolimod or is it Avonex? Only the scientists know for sure.
I'm not sure I'm taking to being a lab rat too well. It was okay for the first week. I was skating through life just taking my little dinky capsule every day and managing just fine.
Then today was the dreaded Shot Day. I had to get over the fear of the honking big needle and just do it, like Nike says. I was up at quarter to five for some unknown reason and sat around thinking "well, four more hours and I'll have to do that shot."
Then I decided that was stupid to do a count down and get myself all worked up, so I got the shot out of the fridge and went ahead with it. Everything went exactly as it did last week when I was a spectator while my nurse gave me the shot. Smooth as silk, the needle slid right in. I didn't feel a thing.... It was no biggie at all.
Then about a half hour later I started feeling a little dizzy. I was at the computer and sometimes it will do that to me, so I got up and walked away from it. Next thing I know I'm feeling nauseated as if I were sea sick.
Up until this morning I was positive I was on Fingolimod. Now I'm not so sure. Yes, my heart rate did drop on the initial dosage, so I probably am, but what's the deal with how I'm feeling today??
One thing that's hard about having a chronic disease like MS: every little thing that happens to you, you want to attribute to MS or the meds you are on. Could it be that I'm experiencing... a stomach flu? I often forget that I'm still prone to all the normal stuff that health people have.
I'm feeling better now, 8.5 hours after the shot. I'll know for sure next week if I get sick on Monday again.
I'm not so sure I like not knowing what I'm putting in my body. I thought I would read the enclosed pamphlet that came with the Avonex to see what the side effects are. Turns out that great big piece of paper (that's folded in half at least 8 times despite what MythBusters says is the absolute maximum possible) is only the instructions for administering the shot -- written in about 13 different languages.
Apparently when you are in a clinical trial even the FDA approved stuff that you take doesn't come labeled and packaged the way Joe Customer would get it.
I'm so glad I restrained myself and didn't go running to the local ER with a fist full of strangely labeled weird drugs they have never heard of. I"m sure it would have blown their minds. No, instead I got out a pocket notepad, and, like any good participant in a science project, I recorded my symptoms and the date and time. I'll let my neurologist make heads of tails of all the chicken scratch when I go for my 2 week check up. That's why he gets the big bucks.
Then today was the dreaded Shot Day. I had to get over the fear of the honking big needle and just do it, like Nike says. I was up at quarter to five for some unknown reason and sat around thinking "well, four more hours and I'll have to do that shot."
Then I decided that was stupid to do a count down and get myself all worked up, so I got the shot out of the fridge and went ahead with it. Everything went exactly as it did last week when I was a spectator while my nurse gave me the shot. Smooth as silk, the needle slid right in. I didn't feel a thing.... It was no biggie at all.
Then about a half hour later I started feeling a little dizzy. I was at the computer and sometimes it will do that to me, so I got up and walked away from it. Next thing I know I'm feeling nauseated as if I were sea sick.
Up until this morning I was positive I was on Fingolimod. Now I'm not so sure. Yes, my heart rate did drop on the initial dosage, so I probably am, but what's the deal with how I'm feeling today??
One thing that's hard about having a chronic disease like MS: every little thing that happens to you, you want to attribute to MS or the meds you are on. Could it be that I'm experiencing... a stomach flu? I often forget that I'm still prone to all the normal stuff that health people have.
I'm feeling better now, 8.5 hours after the shot. I'll know for sure next week if I get sick on Monday again.
I'm not so sure I like not knowing what I'm putting in my body. I thought I would read the enclosed pamphlet that came with the Avonex to see what the side effects are. Turns out that great big piece of paper (that's folded in half at least 8 times despite what MythBusters says is the absolute maximum possible) is only the instructions for administering the shot -- written in about 13 different languages.
Apparently when you are in a clinical trial even the FDA approved stuff that you take doesn't come labeled and packaged the way Joe Customer would get it.
I'm so glad I restrained myself and didn't go running to the local ER with a fist full of strangely labeled weird drugs they have never heard of. I"m sure it would have blown their minds. No, instead I got out a pocket notepad, and, like any good participant in a science project, I recorded my symptoms and the date and time. I'll let my neurologist make heads of tails of all the chicken scratch when I go for my 2 week check up. That's why he gets the big bucks.
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