12th Infusion!!!!!!!

I'm finding that I'm writing a little late, regarding my Tysabri infusions. There hasn't been anything earth shattering in the news lately regarding Tysabri or PML. I'm going to imagine that in the next few months, we should hear more regarding new data, tests, label changes, etc.

I've literally had 12 infusions, but January 2010 marks one year of being on Tysabri. Outside of annoying symptoms, that are completely due to the high stress levels in my life, I'm doing great. April marks two years diagnosed with MS.

I did get my vaccine for the seasonal flu and the H1N1 vaccine. I had no reactions from either---please note that I received the dead version of both, as MS patients should never receive the live versions.

I'm about ready for the holidays. I want some good luck for Christmas! Thankfully, when my sister and I sat on Santa's lap to get the picture taken, he didn't ask me what I wanted. I would've given him an earful.

In regards to this CCSVI stuff that is sweeping MS boards across the country: I'm baffled. I'm interested to see what comes of the research. My mother and I were thinking it could be a by-product of MS---or just one of the million things that MS does to your body. So the jury is still out! I'm glad that there is research and funding for it, because if it can help people who're farther along, then that's a great thing.

I don't like this cold weather we're having in Chicago. I sometimes wonder if some of my symptoms are heightened due to this. I know people have real problems with extreme heat or cold. I'm not sure if I suffer from side effects. I think I just charge along sometimes and ignore things.

My next Tysabri infusion is on Christmas Eve at SEVEN in the morning. Otherwise I'd have to wait until the 28th, which would be my birthday, and it'd also be a few days past the four weeks, and I don't think I need to wait that long with all the holiday to dos we have.

Our MS support group has grown, and we have a larger location now.

Multiple Sclerosis Foundation "More Sunshine" Support Group

Alexian Brothers Hospital

800 Biesterfield Road

Elk Grove Village, IL

Conference room #2

7pm to 8:30pm

We meet the FIRST THURSDAY of every month!

11th Infusion, Feeling Old, and Insurance Companies

They say you can never go back. Oh yes, you can! (But it might not be the same, so you've been warned!) I went back to my college town for homecoming. It'd been seven years, and boy did I feel old! Not only had our old watering hole been turned into a club, but everyone around me looked like babies! And it's always interesting when you're dancing with friends, and some drunk college kid comes behind you trying to dance with you. I vaguely remember that being the "way" guys would show girls they wanted to talk to them.

I had my 11th Tysabri infusion the following week, and as always, it went fine.

This e-newsletter from the Rocky Mountain MS Center is really important. I've seen this posted on various sites, and I'd like to give credit to it.
You can find the entire article here, but I would like to stress the important highlights of the article.

Regarding PML:

"With the recent announcement confirming the increased number of PML cases, other information has become available as well. Of the 24 cases, two-thirds have been in Europe and one-third in the U.S. This is surprising considering that about 60% of exposed patients have been in the U.S. and only 40% in Europe. Why there appears to be a higher risk of PML in European MS patients on Tysabri is unclear. Additionally, the bulk of the cases have occurred in year three of Tysabri treatment. Specifically, in year one the risk is less than 1/30,000; in year two, it is approximately 1/3,000; and in year three the risk increases to approximately 1/800. The risk is real: in addition to the four reported deaths due to PML, mild to severe disability has been reported in those who have survived their bouts with the brain infection."

Regarding safely stopping Tysabri due to the fear of relapsing:

"The first possibility is to switch back to an available first-line agent after one to two years of Tysabri therapy. One major consideration with this treatment option, however, is the fact that recent data suggest that when people go off Tysabri, there is a 20% to 50% chance of a rebound effect. This means that disease activity could flair-up above the levels previously experienced by the patient. According to Dr. Vollmer, it is therefore very important that treatment of this nature be done as a study within an intense safety monitoring program.
One study that is looking at the use of Tysabri in combination with the first-line agent Copaxone is about to be launched at the Rocky Mountain MS Center at Anschutz Medical Campus. These agents are being combined for a 3-month period, and then study participants are continuing solely on Copaxone. The safety of using these therapies in combination was already established in the GLANCE study. This method will be deemed a success or failure based on whether Copaxone is able to maintain a high level of treatment effect. If the treatment approach does not maintain the high level of disease control typical of Tysabri, there is no reason to pursue a larger study to determine if this approach reduces the risk of PML. The current study requires only 100 study participants, whereas a study specifically looking at the risk of PML would require 10,000 study participants or more, making it a huge undertaking.
The second possibility is the use of drug holidays, meaning that patients would be given annual "holidays" from their Tysabri treatment with the goal of reducing the risk of PML. According to Dr. Vollmer, however, the method is racked with concerns, including the above-mentioned disease rebound effect and the possibility of building up neutralizing antibodies to Tysabri. Normally, that risk of developing these antibodies is only 6%, but if patients were to go on and off Tysabri a number of times, that risk could possibly go up and the drug could lose its treatment effect.
Additionally, the fact that there is no evidence that the preclinical phase of PML lasts more than a few weeks or a month, annual "holidays" are not likely to protect against the brain infection. In all actuality, patients would have to take "holidays" on a frequent basis in order to effectively protect against PML, which is not a feasible option.
The third possibility is that after one to two years of monthly treatment, Tysabri infusions could be changed from once a month—as they are currently prescribed—to every other month. The current 300 mg dose is designed to maintain saturation for approximately 6 weeks. If the dose were adjusted and given every 8 weeks, it is possible that on average there would be one week that full blockade of transmigration would not occur and immune surveillance would kick in—meaning that the immune system would function regularly during that week. The thought is that this one week out of 8 of normal immune function might minimize the risk of PML."

What does all this mean?

In MY opinion, we know doctors and researchers are working on safe ways to keep patients on Tysabri or take them off. The article also quotes the double efficacy of Tysabri over the other drugs. The doctor also is quoted as saying that it would be a first line therapy, if it weren't for PML.

When I started Tysabri, I was told the risk of getting PML was 1 in 1,000.

This article says that the risk is:

Year One---1 in 30,000
Year Two---1 in 3,000
Year Three---1 in 800

We have to remember Tysabri has only been reintroduced for 3 and 1/2 years. So in MY opinion, the 3rd year data is slightly skewed because there haven't been a ton of people going into the third year. As I've told people, only time will tell. I would love to guess that in six months from now, the risk of getting PML in year three will be well within the 1 in 1,000 range.
Once again, only time will tell.

In the meantime, I'm still not scared of PML, and I'm happy to know that they're looking into safe ways to either keep people on Tysabri or transition patients from Tysabri to another option.

I've said time and again, this drug has completely changed my life. I can't imagine life without it.
I've been overly stressed for the past few months. Sometimes I've felt like I'm at my wits end. I've noticed that my MS symptoms have been active lately. Yesterday, for example, my left hand was tingling. But the good thing is, the symptoms aren't worsening, and they're not lasting for a long period of time. But I know I really need to slow down.

I get infusion #12 the day after Thanksgiving. I had spoken with my neurologist about what we'd do to monitor me, after the "jump" in PML cases. We talked about more frequent blood work, which could easily be done before the put the medicine in the IV line.

On another note, I'm very disappointed at the insurance companies. I spoke with a friend, who's insurance was going up $200 a paycheck for their family. And our company is looking at other options, as Blue Cross Blue Shield of Illinois raised the premiums by 59%. It makes me sick. With my medical premiums and my various payment plans to the hospital and other doctors, I'm paying at around $800 a month as it is, to keep my disease under control. I had been reading that premiums were going to increase, but it sickens me that they're punishing healthy people and sick people. I work full time. And frankly, we can't afford all the cost of medical care. I've always said my health comes first, but when I've heard people saying that medical costs can bankrupt people, I can understand why. I'd be up to a $1,000 a month in medical care, if we stick with Blue Cross. Insurance is a necessary evil, but I know for a FACT that the bonuses Blue Cross gives to their employees could more than cover my premiums and medical care. It's extremely sad. I'm against socialized medicine, but there needs to be reform, because more and more people are going to suffer. People aren't going to be able to afford to pay the premiums because they need to feed their family.

Biogen will provide financial assistance for Avonex and Tysabri. When I spoke to them months ago, we didn't qualify. Both my husband and I work full time, so our income is over the limit. But we also have a mortgage, car payment and obviously a lot of medical expenses. So I'm going to have to start the process of appealing their decision, which will include me sending in tax returns, paycheck stubs and statements. Hopefully that will help us next year, especially if our premiums increase.

10th Infusion and Terre Haute, Indiana

I had my 1oth Tysabri infusion a few weeks ago and all went well! I actually get #11 next Friday---the day before Halloween.
I'm going back to my University this weekend for homecoming. My little sister Lauren is going to be traveling with me. I'm really excited, because there are so many people I haven't seen in a long time that are going to be there, plus some "new friends" I've met who also have MS. My 10th infusion went off without a hitch! The nurse I had, and I don't remember her name, put the IV in one try and didn't use any lidocaine. SWEET!

I've been busy over the past few weeks/months. I am co-leader of an MS support group, and we had our first meeting in October! We're meeting the first Thursday of every month in Schaumburg, IL. So if you're in the area, please email me, and I can give you information.

I went to college in 1996 and graduated in 2000. Terre Haute, Indiana was very industrial and was a hub for trains, as there were a lot of businesses in town and in the surrounding area. Terre Haute had four Universities: Indiana State University, Ivy-Tech, Rose Hulman Institute of Technology, and St. Marys of the Woods. Indiana State wasn't a large school----around 13,000 students. And for the most part, Terre Haute wasn't very large either. I joined a sorority while I was there. At most, the chapters had 75 girls in the house each year. I recently found that the three of my sorority sisters have Multiple Sclerosis. We all lived in Terre Haute between 1992 and 2000. Terre Haute, for location purposes, is about an hour west of Indianapolis. I was shocked when I found out that three of my sorority sisters have MS.

Then, a few days later, one of my co-workers asked me to reach out to his wife's friend. Brooke had just been diagnosed with MS and was having a hard time dealing with the diagnosis. Come to find out, Brooke went to Indiana State and was living in Terre Haute. It seemed like the number of people with MS and the connections to this area was higher than should be expected.

So through Facebook, the telephone, and emails, people started reaching out to others, and more people emerged who have MS and are from the area or had attended school in Terre Haute. One of my co-workers in college emailed me to tell me that her mother has MS and she knows six other people from the area with MS. I knew that my friend Steve's dad has MS---his dad has lived in Terre Haute his whole life. My friend's wife has MS, and she grew up in Terre Haute. Everyone has a common link: they either attended school in Terre Haute or lived there.

I called my neurologist who found it interesting and unusual. Dr. Reiss is an Associate Professor at Loyola University, so he said he would contact the National Institute of Health. In the meantime, I've collected as much data as I can, with names and information of people from Terre Haute with MS. My neurologist may submit my data to the NIH. An epidemiology study should be done. And Lord only knows, I'm just one person. If there are other people, the "higher powers that be" are going to be able to find out that information.

There used to be a paper mill in Terre Haute, and it made the whole town smell. I remember driving south of town with some of my sorority sisters to see meteor showers, because of all the pollution. All in all, if scientists can study the town and find an environmental link, it may help us sooner than later find the reason why people get MS and help us find a cure.

I have prepared a letter to email to people giving them an idea of what we're trying to accomplish. I've asked for certain information that I will give to my neurologist. And people are given the choice to come forward or remain private.

I'm looking for the following information:

1. Name
2. Birthdate
3. Birthplace
4. Year diagnosed with Multiple Sclerosis
5. Did the individual ever have mononucleosis?
6. Has the individual lived in the Terre Haute area, and if so, what years?
7. Did the individual drink city water or water from private wells, while living in Terre Haute?
8. Did the individual's parents ever live in the Terre Haute area, and if so, for what years?
9. Do any of the individual's parents have MS?
10. Current living location (city and state)
11. Contact information, such as email or phone number.

I'm not trying to open up Pandora's Box---everyone is hopeful there will be a cure for Multiple Sclerosis over the next few years! Finding links will help us!

9th Infusion and Dealing With Wakadoos

I will say that this infusion kicked my butt. I had gone into the 9th infusion with a really stressful week. In fact, my MS symptoms were driving me insane. I was fatigued, having tingling in my left hand (the part of my body most damaged from the last attack), and what I call itching on my left arm, chest, shoulder, and neck. It's really just the nerves getting all crazy, but I find when I just scratch the hell out of it, then it feels better.

I came out of my 9th infusion without any issues. Although this time around, I got really really hormonal and "lost my shit." I sobbed Friday night. I think it was just a culmination of things, as well as a build up of all the stress. And let's face it, even though Tysabri is nothing compared to how you feel on the interferons, it still is a powerful drug, and I'm sure there's something it does to your system.

I "lost my shit" after I got an email from a woman from California. I had posted an email that Stu posted on his Stu's Views and News blog. It was about the crazy high amount of people in Terre Haute who have MS---this also includes people that lived in that town at some point.
My sister's boss actually is a math whiz, and he said that per capita, and with MS statistics, only 80 people in Terre Haute should have MS. Mmmmmm. Not the case. I'm still doing my research, but the numbers are astounding.

Anyways, because Stu's blog goes to 50 countries and is circulated all over the world, I received some emails from some people. Some wanted and some not wanted.

In a nutshell, I received an email from a woman who's had MS for 35 years. She claims her MS is "benign." But she can barely walk. She did her best to insult me right from the beginning. It was completely rude. She has chosen to be a tree hugger and take a natural approach to treat her MS. Obviously, her way is working. She mentioned that her family has MS, but she doesn't talk to them. Hmmmmmm. I wonder why? She went on to say that I need to eat beans and nuts and stay away from dairy. (Does she know me?) She also hinted that I'm in denial. She said Tysabri has killed 11 people (I think she doesn't know how to read), and that it stops working over time (because last time I checked she's a doctor). She had all her information wrong, and I managed to write a polite, sarcastic, email back to her, siting her errors. If you're going to spout information off, you better be correct!

One thing I've learned through my MS journey is that everyone has different opinions. People treat their MS in different ways. People are on different disease modifying therapies. But one thing I HAVE learned is that the holistic, natural people are FANATICS and do not listen to facts. They completely bash whatever treatment you're on, telling you what damage you're doing to your body. This particular individual told me because my neurologist is older, he isn't up to date on things. HELLO?????????????? He participates in trials and is very up to date. (Mind you, he told me NOT TO LISTEN TO THOSE PEOPLE). She also follows some doctor who "cured" herself of secondary progressive MS. I would like to meet that doctor, as she is Jesus's sister.

Anyways, those fanatics are rude, narrow minded, and they will have no problem telling you what you're doing wrong.

I do know this. It is PROVEN, no matter what DMD you are taking, that it slows down the progression of MS. Treating MS holistically and naturally does not have any proof that it slows down the disease. I mean seriously, don't you think if there were safer, non-pharma ways to slow down the progression, EVERYONE would be on that bandwagon? (I'm not trying to be on a soapbox, but I was pissed off).

The one thing I do is respect everyone, and even though I think I'm on the best drug (which science has proven is the most effective), I am NOT going to knock anyone's therapy. It's not right, it's not fair, it's rude, it's disrespectful, and if it works for other people, then GOOD FOR THEM!!!!!!!!!!!!!!!!!!!!!!!

SO---CRAZY LADY FROM CALIFORNIA, you need to mind your own business and not be quick to judge. I'm playing golf. I'm a happy person. I don't sit at home and feel sorry for myself. My family talks to me. And I didn't move halfway across the country because I wanted to get away from it all. I eat healthy food and enjoy ice cream. I don't live on a diet of beans and nuts.

Before I went on the DMDs, I had THREE MS attacks between December 2005 to the big whopper of a one that started in November of 2007. I started Avonex in May of 2008, and I have not had ONE attack. I'm in remission. I have NO new lesions, and my two biggest lesions have shrunk, not to mention that there is NO activity.

Moral of this story: Do NOT put down someone's choice of treatment. Everyone's MS is different, and everyone has their own comfort level of treating their disease. If that person chooses to take a natural route, I will respect that. I have always been respectful of everyone's course of treatment. What I will not respect is ignorance.

My Tysabri facebook group has made me meet a lot more people on Tysabri. I had an email from a guy who'd been on Tysabri for well over 2 years. He was scared of PML. Even though the last three cases had two of them outside of the US, he was still scared. He asked me what he should do? I told him to talk to Lauren Roberts because she might be able to provide him some data. I told him to talk to his neurologist. I told him in the long run, he needed to do what he feels comfortable doing. Do I think he's at risk for PML? He has the same risk I do. In the meantime, he's decided to stop Tysabri and start Copaxone, once his neurologist clears him. I told him that I'm glad he's going to try another therapy. I also told him that if he decides he wants to go back on Tysabri, he can. He has choices. THANKFULLY we all have choices! And with all the drug research and drugs in trial, we're going to have even more choices. 15 years ago, MS patients didn't have those choices!

I am now going to relax, as I had my sister in town this weekend, I played 36 holes of golf, and I haven't had any time to unwind.

My next post will all be about the Terre Haute, Indiana MS mystery. I also have some Tysabri success stories that need to be shared.

Ta ta for now! (Wisdom teeth come out the 17th---joy of joys!)

8th Tysabri Infusion a Success!

It's been quite some time since I've been able to write, and I have so much information to share. I don't even know where to start!

I found out that three of my sorority sisters have Multiple Sclerosis. We all attended the same school from 1992 to 2000. In the meantime, I know of many more people from the town, who have MS. I was introduced to a woman this week, through my coworker, who was just diagnosed. Paul asked me if I'd be willing to talk to his wife's friend Brooke. Mind you, we're in Chicago, and Brooke is four and a half hours away. Come to find out, Brooke and I went to college together.

I started to get really concerned at this point. I know other people from my college town with MS. Everyone seems to have something in common: they either lived there most of their lives, or they attended school there.

Everyone seems to be in agreement on one thing: the number of people with MS from who lived or live in that town are high. I don't have all the data compiled yet, as this has transpired over the past few days. So through facebook and other ways of communication, there's a chain of emails being sent, asking our fellow classmates or people from the area if they have MS or if they know of someone with MS. The numbers are astounding.

I called my neurologist, and he asked me to compile as much data as I can. In a nutshell, the NIH and EPA need to get involved and an epidemiology study needs to be conducted. I received an email from someone, and she said that her professor had been doing tests on the river that runs through town. He was convinced that there was something in the water.

So everyone can agree on one thing: something's not right! We know that we think MS is caused by genetics, Epstein Barr, environment....etc. If researchers can find a link, then we're one step closer to a cure---so by studying this small, Midwest town, we may be able to understand this more.

I've also been told I am now going to be a co-leader for a new support group. If you all knew how much I have on my plate right now, you'd be shocked! I had been saying I need to take stuff off my plate, and I just added something! We're hoping to start the support group soon--in the Schaumburg area.

Here is the link to my Facebook group that I started: "Tysabri: As long as my body tolerates it, I'm not scared of PML!"
There are people from all over the world, and we can provide support for each other, as well as help other people who may be wanting to start Tysabri. Mind you, I've been able to help two people make the decision to switch.

I'll say that again, and it's just my opinion, that I don't know why everyone isn't on this drug. But I will never "knock" the other drugs, if I'm speaking with someone who's not on Tysabri. All I can do is speak passionately about what the drug has done for me.

It's Not Halloween, and I'm Talking About Scary!

This picture is SOOOOO old! I think it's from my sophomore year of college---1998---during our Indiana State University sorority rush week. I AM an Alpha Phi. I said "was" once and was immediately corrected. (Check out my awesome bangs!)

Since the reintroduction of Tysabri in the United States, there have been a total of 11 cases of PML reported, the most recent being July 24th. I immediately went to the update site (which will no longer be reporting PML cases after the 28th) and was slightly overzealous in my comments on Facebook. I was looking at the bottom of the chart and saw that the PML case was not in the US and posted that the most recent case was outside of the US. I stand corrected and deleted my incorrect information from a discussion thread. The most recent case occurred here in the United States. This is only the 3rd PML case here in the United States, since Tysabri was reintroduced.

Unfortunately, I do not have any information on the patients history.

Per Lauren Roberts (author of Living with MS):

"Hi Erin! Until that latest case of PML has more information available as to the patient's past medical history use of treatments, it is very hard to tell. I would not be surprised if the patient was previously immunosuppressed due to treatments of perhaps methotrexate, Imuran/azathioprine, Novantrone, or IVIG, etc., or was previously on one or more of the ABCRs.

Time and information will tell."

I have created a new group on Facebook and am hoping to rally everyone on Tysabri or those considering Tysabri to joining---we have members from all over the world.

Please join my group "Tysabri: as long as my body tolerates it, I'm not scared of PML!"

Okay---so the question is: Am I scared? MS is scary. Being 31 with an incurable disease is scary. The future is scary. Our health care system is scary. Wall Street is scary. Japanese beetles are scary. The movie "Candyman" scares the bejesus out of me.

Kidding aside---it is scary. But all of the MS drugs pose a potential risk. ALL OF THEM. As a patient, you can choose which risk you'd like to take. However, it's important to know that NOT treating yourself, NOT taking care of yourself, and NOT educating yourself is going to allow MS to control your life. And that to me is scarier than anything else. I believe that not treating MS is the scariest thing of all. All of the disease modifying drugs have proven that they slow down the progression of MS.

I've heard from people that they're scared of Tysabri due to the PML risk. I can stress that even with this new case, the risk is still lower than when I started the drug seven months ago. Everyone is going to have their own reasons as to why they don't want to start taking Tysabri or have stopped taking it. Some people have a family---their family has fears. Some people have tried it and don't tolerate it. Some people are scared to take the risk. But there are some people who live by fear and don't educate themselves, or they allow their doctors to dictate what goes into their body. And THAT I have a problem. It is not up to the doctor. And I can count on ONE hand, in the past 30 days, how many times I've heard doctors either speak misinformation about Tysabri, or I have heard stories about doctors telling their patients misinformation about Tysabri. Now that is scary. Our doctors treating us don't know the facts?

In the meantime, I've corresponded with several people over the weekend who are on Tysabri or are about to take it. Those on it say the same thing I do, "It has changed my life!" Those about to start it are excited, because they've heard the testimonies and done their research.

I think what scares me the most is not having a cure for Multiple Sclerosis. I do know that I believe over time, the medication out there will improve. Look at the progress over the past 10+ years. I always thought being forced to stop taking Tysabri would scare me, but I hope that when that time comes, (hopefully it never will) there is either a cure or a better drug. Can you imagine? A drug out there more effective than Tysabri? We know from past experience and time that it's possible---as is a cure.

Sixty Degree Weather in July?

I just finished 9 holes of golf today. I wasn't trying to commit myself to it, as I really really messed up my back two weeks ago and have been having a lot of chiropractic work done---including: acupuncture, cupping, massage, manipulation, and I'm now the proud owner of my very own Tens Unit. If you don't know what that is, it's a portable device that sends electrical impulses into muscles. So far it seems to be working. My golf game is also getting better.

All in all, I'm pretty moody. I'm not a happy camper right now, and I'm really not going to go into a laundry list of everything that's bothering me. I'll save that for my therapist or a friend's ear. However, I'm full of various emotions, that I'm really not enjoying right now, and I'm praying to God (yes I pray) that at least ONE good thing happens in the next few weeks (one thing on the list of things I've been praying about).

I want you to leave here with some great information, which I will just give using numbers. I'm really not in the mood today, and I think it's important to get some of this information out.

1. Biogen Idec and Elan have reported that the number of patients on Tysabri is increasing rapidly. We're looking at an increase of 27% over last year. I read this article at CNBC, and I was impressed that it was picked up by a major news channel (outside of the ones we're used to). It looks like more people are going on Tysabri.

2. I went to a Biogen dinner on Wednesday, where Tysabri AND Avonex were both the topics. I had never heard a doctor (outside of my own neurologist) speak so passionately about Tysabri. He was accurate in the information he gave, and he explained how it worked. Yes, he gave us all the PML information we needed, but he really advocated for the drug, in the only way he was able. Doctors have to be careful what they say. I was very impressed by his entire discussion. In a nutshell, he said the same thing I've been saying. Tysabri is the best drug out there. It's slows down the progression better than any other drug out there. The facts are there.

3. I am getting more people on Facebook. My friend Bartira, who is on her 65th Tysabri infusion, just joined the site, and she is already connected with my MS friends from all over the world. I think this is very important, because it brings us all together and gives us people to lean on during rough times.

4. Lastly, I want you to make sure you join this blog---follow it. Stu does a FANTASTIC job gathering all sorts of information from all over the world---giving us all the ammunition we need to know about our disease and the options available to us. You can join his site by clicking here:

Hopefully, the next time I write, I will be able to share some great news and will be much happier than I am now. Right now I don't know if I should start screaming or crying!