Goodbye Rebif - Hello Tysabri!!!

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Goodbye Rebif - Hello Tysabri!!!

Postby catfreak » Tue Mar 10, 2009 10:23 am

I posted this on the Rebif thread also:

Went to my Neuro yesterday for a check-up after 9 months on Rebif.

I have tried to be upbeat and positive but some days I just want to cry. I have a constant fever and I am so fatigued I can hardly move. Well he took one look at me yesterday and said it's time for a change.

My options as far a drug therapy are:

Rebif at 1/2 dose .22mcg :cry:

Betaserone shot every other day :cry:

Copaxone shot everyday :cry:

Clinical Trail for a pill - if open, may get placebo :x

Clinical Trail for Campath - could end up with Rebif :x

Tysabri once a month infusion :? :idea: It's worth a try. I am tired of the CRABS!!

I did not even want to talk Avonex!!!

I talked about it with hubby and thought it over and signed the papers to get it going. If it all works out I should start in 2 weeks. :)

I am so glad to be off the Rebif and this can't be worse.

CF 8O
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Tue Mar 10, 2009 11:52 am

CF,

Welcome to the club! As you may or may not know, I too was on Interfernon Beta-1a and after 3 1/2 years had to come off of it as my side effects went nuts. At any rate, to date and I've had 4 infusions with my 5th tomorrow. I have never experienced any side effects whatsoever. I'm still a rookie, but it doesn't make me feel anything. I thought I felt a little flushing of the face during my first infusion, but it was gone before I left and I never took anything for it.

GOOD LUCK!!!
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Postby catfreak » Tue Mar 10, 2009 1:11 pm

Hey Lew!!

What excited me and my husband is that they said a lot of their patients said they were not as tired and had a much better quality of life than with the interferons. He also took me off Neurontin and Provigil. I will start on Adderall and Klonopin.

I cried yesterday cause I am not a quitter and I am very competitive. I challenge myself to push through and tough it out. I felt guilty for being so pitiful. Because I told them there were MSers out there so much worse off than me, what did I have to complain about. The nurse said there was one patient that started Tysabri and she was using a chair, but now she came in for infusions and walked around with her I.V. Pole (they have a walking track inside the MS Center) so happy she could get around better.

Thanks for the Welcome!! Let me know how the infusion goes and I will keep you posted about when I start.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby harveythewonderhorse » Wed Mar 11, 2009 12:17 pm

Had ben on betaferon for about 4 yrs, switched to Avonex after two relapses, then had two bad relapses within three months. Am after my 3rd infusion, all 14 in the group have not had any hospitalisations since starting,so am hopeful. Got eye/ear/throat infections last week, was feeling a bit flu-ey and left it late to go to the dr but got over them .The trip to the infusion centre is a long one for me but I def feel I'm better, if still a bit tired.Go for it!
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Postby Loobie » Wed Mar 11, 2009 2:17 pm

Had my 5th infusion today. It went off like all the rest; uneventful. However, some good things unrelated to my MS happened at my site today! I didn't get offered a job, but the practice manager is aware I've been laid off and am considering retirement. Well they are losing a research coordinator due to her husband relocating (he's a pilot at the air force base) and they approached and asked for my resume since they know I don't want to go back in manufacturing. Could be a complete dead end, but it was flattering nonetheless. I think they are interested in my lean, six sigma experience and want me to help them get organized! Now that'd be a challenge :lol: . At anyrate CF, I hope you have the same non eventful times I have in the infusion chair. I'm feeling just like I did when I went in, and that hasn't been all that bad here lately. Still, and always will, hate MS, but it's been tolerable and I think it's due to the fact that the Tysabri has given me a window of disease non-activity where I can get back in some sort of shape. I, of course, have no way of knowing wheter the Ty is responsible or not, but the timing sure is funny!
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Postby catfreak » Wed Mar 11, 2009 5:43 pm

Lew,

Glad to hear your infusion was uneventful. That's great that the site asked for your resume. We can always use a self confidence booster. What is Six Sigma experience?

Hey Harvey,

You seem to be doing great too which is great to hear. I have a 2 hour drive to my infusion center/dr office, which I have been doing every 6 months for 6 years now, so I guess once a month won't be so bad. I am going to go for it!

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Thu Mar 12, 2009 3:05 am

CF,

Six Sigma is a standardized problem solving method typically used in manufacturing. That coupled with Toyota's 'lean manufacturing' philosophy of standard work and standardized approach to workplace organization is all the rage these days to try and make sure you drive all the waste out of every business process. It's becoming chic in healthcare in some pockets because of some of the hierarchy holdups for documents and the like to be approved, as well as looking at the general efficiency of all processes. It's not rocket science, but it can be cumbersome. It's just that it can be so structured that a lot of people who aren't good with details really struggle with implementation and the action that needs to take place leading up to implementation. You basically end up fundamentally changing an existing process, so it's usually met with some initial resistance since it's change, but the results normally speak for themselves.

For this reason, someone from the outside is normally brought in, but once the ball gets rolling, you can become an integral part of the operation since it's hard to stop. If you've spent any time in automotive factories of both domestic and foreign automakers and can compare their operation, you'd see why it's so appealling to the big 3. They just have too many roadblocks with organized labor to take this on all the way. There is just way too much work sharing and autonomous action that needs to happen on the floor level, and it can be impossible to implement when dealing with the unions since once the rules of work are established, it's been too difficult to try and effect change. A rather convoluted description, but it's hard to try and explain if you have no frame of reference or familiarity with driving waste out of processes. I have no way of knowing what you are familiar with, thus the lengthy explanation, and believe me, I skimmed over it pretty hardcore.

A 2 hour drive? Man, I'm spoiled. I have a 15 minute max. drive. Do you live rural?
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Postby catfreak » Thu Mar 12, 2009 7:27 am

Lew you forget - I am in Mississippi!!

My Dr has an MS Center in Cullman, AL which is 90+ miles from my home. So it takes 1:45 to 2 hrs to get there. Whether I went to Nashville (3hrs) Memphis (1:45) Birmingham (3hrs) Huntsville (2hrs) Jackson, MS (4hrs) it will be a long drive. Because he is such a great Neuro people come from all over the US to see him.

I got the call from the Touch people this morning and they said my Dr office should let me know when I start my infusions some time next week. He said they may require me to be off the Rebif for a while before I start Tysabri. Hurry up and wait......

The six sigma thing is interesting. Some of the job openings where I am employed require six sigma certification. Sounds like some kind of cult or fraternity!

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Lyon » Thu Mar 12, 2009 8:03 am

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Last edited by Lyon on Sat Nov 26, 2011 1:58 pm, edited 1 time in total.
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Postby catfreak » Thu Mar 12, 2009 12:37 pm

Bob,

Cullman is the easiest drive for us and it's a pretty area too. Laid back and easy going town. Definitly not like going to the big city and fighting a bunch of traffic.

So your wife's family lives down the in south Alabama area where the shootings happened. We drove down through there last spring going to Florida. That is such a tragedy, I can't even begin to imagine what happened down there. Have they said anything about it?

We will be keeping the people in that area in our prayers.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Thu Mar 12, 2009 4:17 pm

I've been to Cullman once. My company I was working with acquired Cullman Products. It was a cool place, but we went in July and I have never been that hot. Thank the good lord I didn't have MS yet or I would have melted! I remember going out in the shop (I was a weld engineer and had to go down to develop a job) and I literally had my shirt soaked through in about 10 minutes. I don't know that it was overly hot temp. wise, but the humidity; have mercy!

Concerning Six Sigma. It is tossed around with the terms black belt and green belt also. Someone will say they need a "six sigma green belt" for the job. It's just the different levels of training that you may have. It's really about using statistics and total quality management to standardize your approach to problem solving. It goes back to using standard deviation to set your parameters for checking quality and integrity of products and processes. I think you can even get a six sigma Masters certificates from universities. I think Motorolla actually penned the term and is more or less credited with the creation of the concept. It started out in manufacturing and has since spread across professions. I think the reason so many things start that way is that manufacturing in this country costs so much more, so how things are done have to be scrutinized 6 ways from Sunday. If they stick, other industries adopt the principles.

If you want to know the truth, the toyota manufacturing system is really the model for everything that gets made in my experience. They really keep it simple and they get trained from top to bottom. It really is a remarkable company. That's why it's so hard to watch the news right now because it just comes up short when GM says they can't make money making cars in this country when others are doing it. Their hands are just so tied in terms of exacting real, meaningful change. I hope they get it ciphered out so my skills are in demand again! I feel like such a statistic right now. It really is amazing when I went to the engineering staffing company the other day. The guy told me that he had literally hundreds of resumes that looked just like mine. My "layer of management" just basically became obsolete in a very short period of time. Lots and lots of people with the title of manager or vice president are looking for work around here right now.

Season One of Weeds is looking pretty good right now as learning material! :lol:
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Postby catfreak » Thu Mar 12, 2009 5:49 pm

Lew it's like that here most of the time with the humidity. It was 80 here on saturday and it felt like 90. Of course it's 30 tonight and freezing rain. My MS goes crazy when it gets above 80. I love summer and dread it at the same time.

Toyota is building a manufacturing plant in Mississippi just west of Tupelo. This is about 60 miles from where I live. It started out as a plant to build the Highlander, then gas went to $4 a gallon and they decided to change it to manufacture the Prius. Then the economy tanked and they said they were not going to complete to plant at all. Talk about a roller coaster of emotions for the people around here! Now they are back to talking about completing the plant and building the Prius again. Toyota has put 300 million into this project, the state and local governments have invested a lot also. We need this very badly in our area. My stepson is a supervisor for the contractor actually building the structure.

http://www.bloomberg.com/apps/news?pid= ... efer=japan

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Fri Mar 13, 2009 2:25 am

If they're that heavily vested, I'm sure they'll pick back up when things pick back up. One can only hope anyway!
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Postby patientx » Fri Mar 13, 2009 5:39 am

Lew,

It's funny you mention Motorola and six sigma. Years ago at one of my jobs, my boss and I were dealing with some manufacturing issues. He had previously worked at Motorola and started explaining the six-sigma concepts to me.

It sounds like you're well versed, but how much do you know about Kaizen?
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Postby Loobie » Fri Mar 13, 2009 7:11 am

Lots,

I've led many 'kaizen team' efforts. It's basically loosely translated as continous improvement. Hell, I have a few books on the subject and one that is titled simply "Kaizen". Anytime you begin a lean process analysis, the first thing that has to happen is what's called a current state Value Stream Map. It is basically a very comprehensive process flow that looks at everything, including information flow and transportation and everything versus a traditional flow that just looks at the functional process steps. One thing that happens from these is that there are usually some glaring inefficiencies that fit into the "if it looks like a duck" category and don't require statistical evaluation or lean evaluation because they are just obviously in need of improvement. In the trade we call these "kaizen bursts" to point out areas where you just came in with no evalutation and changed it for the better based on common sense. The japanese look at continous improvement as constant, small, incremental steps always in the direction of getting better on a continuous basis. The bursts are more innovation type "home run" improvements. It really is something to work with a team once you've really changed your culture to one of kaizen. That's when you really start to realize how valuable the untapped resource of the floor worker. It's just so hard for Americans (or course not all) to not be able to say "I did that" instead of saying the entire team is responsible. Leftover hierarchy from the historic dictatorial nature of North American manufacturing. You know the old check your brain at the door when you clock in mentality. That mentality is really closing the door on your most valuable resource in terms of really knowing what's going on "in the weeds".

Then when you couple the kaizen mindset of the workers with the standardization of lean, you can really work on wringing out all of the waste from a process. It all comes back to the same basic principle of standardization. I mean if you want to improve you have to know where you are starting from, correct? Well you can't do that unless everyone does the job exactly the same way everytime. If Betty does it with two hands and Billy uses one, then you can't compare them except maybe to say one is better than the other. But if you get everyone doing the same exact thing everytime, well then you have your foundation to improve from. That has been historically difficult to do in America, especially in a union environment. We are definitely a prideful people and we like to do things our own unique way and resist conforming. But once people see results, it's not hard to get anyone to come over to the light. It's just getting that first success story under you belt so you don't have to hear "we've always done it this way and we've always been fine".
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