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Old 12-25-2015, 05:00 AM #521
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Quote:
Originally Posted by Natalie8 View Post
Welcome to the every 8 week club RW!

One thing to think about too. I read awhile back that Tysabri may be dose dependent based on weight. Skinnier underweight people were more apt to get PML. I have an appt with the neurologist in 2 weeks. I've been meaning to ask how that factors in.
I haven't switched yet, waiting for my next appointment to talk with the doc. I have mixed feelings about the 8 week schedule. he doesn't seem to be in any hurry to switch me to the extended dosing, I think maybe he just didn't want me having it early anymore, even though I have gone as much as four days early, when I was going to be away for an extended period of time.
Maybe I don't have to give up the reins just yet...
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 12-25-2015, 10:09 AM #522
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Quote:
Originally Posted by Riverwild View Post
I haven't switched yet, waiting for my next appointment to talk with the doc. I have mixed feelings about the 8 week schedule. he doesn't seem to be in any hurry to switch me to the extended dosing, I think maybe he just didn't want me having it early anymore, even though I have gone as much as four days early, when I was going to be away for an extended period of time.
Maybe I don't have to give up the reins just yet...
Hi River!

And Hi Nat!
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Old 01-17-2016, 10:37 AM #523
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Default Older person med study

I met with my neuro Thurs. He is starting a study for older msers to see how they do without meds. He believes meds are not necessary as we get older and has now been granted $$ to do the study. He knows I believe if it ain't broke don't fix it and therefore, do not choose to give up Tysabri. He is my ms partner therefore, fine with my decision. By the way I turned 67 in Dec.

I have been getting infused less often; first every 6 weeks, after a few months went to every 8 weeks. I have been doing this for approx a year and thank G-d am doing well. There have been NO pml cases for those who have stretched out their infusions

Happy New Year!
Linda
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Old 03-03-2016, 06:50 PM #524
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I have been attempting to figure out my # of infusions I thought it was more than I now "think". I'm using this post to help me keep track of me I went every 6 weeks for approx 8 months and every 8 weeks for 10 months. This site helped me figure this out as I was able to back to when I started the 6 week program
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YAY NeuroTalk

107 infusions as of 3/1/16 and started my 10th year 10/2015.

Goodness I can be ****
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Old 04-08-2016, 06:03 PM #525
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Confused

Hi everyone, I know I haven't been on neuro for awhile.

Been working with a new neuro, the first meds had bad reactions. Now he wants to try Tysabri.

My blood work came out neg. for the virus. Thank God. I am still not sure what to do. Reading all the posts are helping me make a choice of what to do.

I am looking towards trying it. When he showed me the difference of my MRI from just 6 months and now there was a big difference. The brain was showing more larger wholes, which he explained this is what happens in the brain also when leading to Alziemer. This is very frightening. Having one disease to fight and the fear of old age problems. I pray I make the right choice.


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Old 04-18-2016, 02:09 PM #526
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Hi Jappy. Good luck with Tysabri !!
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"The best way out is always through". Robert Frost



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Old 05-22-2016, 04:56 PM #527
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Hi all,

Just thought I would check in and say hello. I am still around! This July I will be on Tysabri now for 8 years. I haven't had a relapse (knock on wood!) I get my infusion every 7 weeks. I'm thinking of switching to every 6 weeks because I start to get very fatigued that last week.

I hope everyone is well. I haven't been around much in the forum because I've been busy with life and my job. I'm just plugging along.....

Natalie
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Old 08-05-2016, 08:09 AM #528
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Well howdy folks! Long time no see!
Hope everyone's doing well! I know I am!

Let's catch up, shall we? Lots of stuff happening in my life right now!

The company I worked 27 years for went bankrupt abruptly back in Feb. and left both employees and clients hanging. I stayed on through the transition and just received a "thanks for helping out and see you later" letter today. I am laid off as of the 21st. I wish it had ended a back in May like they told me it would so I could have had the whole summer off and then I realized I can go chase summer now if I want to! I'm excited to see what's coming next at this stage in my life! All I have to do now is convince my neuro and Biogen that I can do my own infusions so I can hit the road and see the world. Anyone had any luck doing that yet?

I lost insurance back in Feb. and ate the cost of one infusion and then skipped one before I was able to get insurance through the ACA (Thank You Mr. President!) and got back on track. Still on the every 28 days schedule, my neuro decided against changing to a longer interval and I had no ill effects from the missed dose. I have an HMO for the first time in my life and that was an eyeopener! Holy Cow! Bless you all who have had to deal with the idjits for years. I finally found a lovely GP and she has accepted that I have my own mind and works extremely well with me after minimal training.

I lost track of # of infusions off the top of my head but whatever the number is when you started in May 2007 and missed two infusions is where I am at...LOL!

As usual, no signs, no symptoms, no relapses, nothing except the spasticity and fatigue that I won when Tysabri was off market wayyy back when.

Life is good.

HI SAL!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 08-14-2016, 04:55 PM #529
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Nice to have heard from you Riverwild!
I am well/doing well and glad to hear you are. I'm getting infused every 56 days.

Sorry about a company you worked for 27 years going belly up

I have been in a long distance relationship for a little over a year Traveling quite a bit, so's he guess that's what a long distance relationship is ! Life is good.. better if he'd move to CO

Enjoy the rest of the summer!
Linda
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Old 10-22-2016, 07:40 PM #530
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Hi all!

I'm checking back in briefly since I don't come here so much anymore. I went from the 7 week to the 6 week Tysabri plan in the summer with the heat and I felt MUCH better. That last week before the next infusion was a bear to survive in over 100 degree temps. But now that winter is coming I may jump back to 7 weeks.

Still going strong with the Tysabri. What a miracle drug. I've had MS for 9 years now - that seems so strange. NT was the first forum I joined and it saved my life.

RW - can't believe you lost a job. Yikes? The question mark is because you seem to be taking it so well. I'm glad you were able to stay on Tysabri. I hope life is treating you well almost 3 months after your last post.

Linda - congrats on the new relationship!

HI SALLY!!
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