Had it this am, went well. I felt improvement just one hour after treatment, having more feeling in my hands. Got a minor skin irritation up the right side of my neck, but it went away within 2 hours. I am flat out amazed at my energy level right now, I feel like I can run a marathon (although not dumb enough to think I can).
All in all, very encouraging.
Was asked to participate in some program where they are collecting data from 5,000 tysabri users. Anyone else doing this? It's some 5 year program where they take your blood, my guess is in case something bad happens so they can analyze your blood, but that could be a bad guess.
I have 2 months to decide if I want to be part of it. I just don't like giving blood.. that's my hesitation, but if it will help other people I have to do it.
Hi Hitdog, just wanted to say congrats on your first infusion!! Thats a big deal. Ive heard from several others on the board that they get huge bursts of energy when they have their infusions, so in that respect you are not alone; however most people say that they dont feel any different until they have had 3-4-or even 5 infusions, so the fact that you feel better, is amazing! And wonderful!
Im not on Tysabri and have no right to talk to you about it, but as a huge proponent of trials, I do hope you participate in the study- it might change someone else's life down the road, having collected this information. But, thats up to you. Good luck with whatever you decide and happy holidays!
Nikki
Hi Hitdog, just wanted to say congrats on your first infusion!! Thats a big deal. Ive heard from several others on the board that they get huge bursts of energy when they have their infusions, so in that respect you are not alone; however most people say that they dont feel any different until they have had 3-4-or even 5 infusions, so the fact that you feel better, is amazing! And wonderful!
Im not on Tysabri and have no right to talk to you about it, but as a huge proponent of trials, I do hope you participate in the study- it might change someone else's life down the road, having collected this information. But, thats up to you. Good luck with whatever you decide and happy holidays!
Nikki
My Nuero told me that he's seen some people feel it after one, most not until after 6 or so. So I guess that makes me a tad lucky. I've heard and am waiting for the crash after 3 weeks, seems to be the norm from what I have read.
I am leaning on doing the study. Im confident in the medication and that it won't do anything bad to me, but if it did, I would like to have them collect my data to help someone else. It's just a little blood.
I am, however, very confident in the drug. It took me awhile before I agreed to go on it, a lot of studying.
As I'm typing this I can feel the bottom of both of my feet, usually it's dull to the touch.
This stuff works.
A lot of it, he told me, is also based on how progressed the MS is in your body. While I show many lesions, for some reason they have not had any "major" effects on me. This could be why I'm one who notices it after just one dose. People with more severe symptoms... it makes sense that they wouldn't notice it for many treatments.
This is definitely a drug worth watching if you are not on it and are getting worse. The results, not from me, but from other patients in his office I've spoken to, are outstanding for the vast majority.
Hit dog, please DO keep me posted on your progress and how this works for you. I am interested in Tysabri for my own use in the future. Currently on Rebif, and doing very well on it, I can see Tysabri as being my next line of defense. You said you have alot of lesions. May I ask? I Have over 50 and they are all in my brain. Ive been dx for just over a year now, and have had many MRIs since my first dx and have been on Rebif since the first week of dx; nothing has changed- which we all know is good news. My doc is very much for me staying on Rebif for as long as possible, and I will; but should things change, I do want to know as much about Tysabri as possible. My neuro has 3 patients on it currently and Im always asking his nurse how those patients are doing...so far, so good!
I too, have alot of weird symtoms which never seem to really stop me. Ive had parastasia, numbness and tingling in my hand for over a year now ( which led to my dx). More recently, my feet have started going numb on me for short periods of time...thats really scary. Im a sales rep- drive for a living, I have a major fear of losing it while driving! I also tend to get optical nueritis every few months...overall, I think im doing GREAT but the fear factor of the unknown can be pretty motivating....
Whatever it is you have (luck?) or whatever....thank goodness for it! I wish you and your family the very best for the holidays and please do keep us posted on how youre doing with this drug.
Hugs,
Nikki
Hit dog, please DO keep me posted on your progress and how this works for you. I am interested in Tysabri for my own use in the future. Currently on Rebif, and doing very well on it, I can see Tysabri as being my next line of defense. You said you have alot of lesions. May I ask? I Have over 50 and they are all in my brain. Ive been dx for just over a year now, and have had many MRIs since my first dx and have been on Rebif since the first week of dx; nothing has changed- which we all know is good news. My doc is very much for me staying on Rebif for as long as possible, and I will; but should things change, I do want to know as much about Tysabri as possible. My neuro has 3 patients on it currently and Im always asking his nurse how those patients are doing...so far, so good!
I too, have alot of weird symtoms which never seem to really stop me. Ive had parastasia, numbness and tingling in my hand for over a year now ( which led to my dx). More recently, my feet have started going numb on me for short periods of time...thats really scary. Im a sales rep- drive for a living, I have a major fear of losing it while driving! I also tend to get optical nueritis every few months...overall, I think im doing GREAT but the fear factor of the unknown can be pretty motivating....
Whatever it is you have (luck?) or whatever....thank goodness for it! I wish you and your family the very best for the holidays and please do keep us posted on how youre doing with this drug.
Hugs,
Nikki
He put me on the Tsyabri because he said my MRI was significantly worse than it was 2 years ago. That being said, the only new symptom I had was a dull sensation in my stomach area.
I had a relapse before the last MRI, in which my feet both went numb as well. Since then, they gradually got better, and after the first Tysbari infusion the numbness in my feet is completely gone.
I still feel it in my last two fingers of each hand, but not as bad as it was 6 months ago.
I was dx'd about 8 years ago. Then, I had vision problems in my left eye when I got hot, but that has not returned for 3 years or so. This thing we have is so weird and so different for everyone that has it.
Today, I was able to take my daughter to the barber shop when I got my hair cut, then we ran errands at the store for thanksgiving. Lots of walking. The Tysabri has given me the energy, I never got tired. 3 days ago, I would have had to sit down and take a long rest. Thats where I feel the main difference.
It also makes me feel giddy.. sort of like you would feel if you started an anti depressent med. It definitely is doing something positive for me (and hopefully nothing negatively I don't feel yet).
I will post after every infusion for a few months. You have a good holiday too
Thats fabulous that you had such a good day. Im so happy for you! Stay up, stay happy and stay healthy! Your symtoms actually sound more like mine then anyone else's which I have heard; however you have had this disease longer then I have - or longer then I have known I have had it.
Nevertheless, sounds like you have a good doctor and you are doing the right thing for you. PLease, DO keep me posted. Happy Holidays to you and your family.
Nikki
Hi all,
I am new here and just wanted to say hi and ask about Tysabri. I have gotten 3 infusions so far and actually feel worse instead of better, I am experiencing horrible depression, fatigue and such. I have always had bad fatigue but since starting on Tysabri its awful, and the depression is unbearable, anyone else experience any of these things????
Hi Hit Dog, I haven't had quite the success you have but I do feel improvement after the infusion. I don't get a crash but I do feel weaker the forth week. Tomorrow is infusion 5 - I look forward to each infusion being better. I have no bad side effects to report.
Candy
Hi Hit Dog, I haven't had quite the success you have but I do feel improvement after the infusion. I don't get a crash but I do feel weaker the forth week. Tomorrow is infusion 5 - I look forward to each infusion being better. I have no bad side effects to report.
Candy
My 4pm crash stopped. I think it was just because my body had never had that in me before. But I still feel pretty good. Also, it's getting colder out, so Im not sure exactly how much the temp drop is helping v.s Tysabri. I guess the real test for me will be next July/August when it's 98 with 100 percent humidity in Columbus.
