Re: Tysabri & Darlene

[Guest guest]

Thank you for sharing this Darlene! Didn't make me sleepy at all! LOL

Hugs,

Challis

Sharon,

I'm finally responding to your email. I was on the Antegren/Tysabri for the Phase II study in 2000. One of 213 patients. Scientist called me after the study and said I have the real stuff. This was a year study...the first few months they did MRI's, blood work, you name it. Tysabri is a monthly INFUSION not a shot. This is no exageration on how GOOD the Tysabri did for me. Before the study I was on the Avonex and had to stop the Avonex for a month before testing me to see if I qualify for the study. The first 3 months the scientists did MRI's blood work, NO infusion yet. I wasn't feeling very well and I tell ya, I went from walking/cane to BAM a wheelchair. Looking back I feel that it was a foggy dream/nightmare and not reality. I had no feeling from the waist down and my hubby had to carry be up/down stairs in our house. I was basically Wheelchair bound. OK so here I am having a major exacerbation taking my walking away so I asked the Doc's to give me steroids since that had always helped me in the past with optic neurtis and legally I knew they couldn't refuse me to receive steroids. The first monthly Antegren/Tysabri infusion I had, I started to feel a little better, next month -second infusion...better....third month infusion the best. I went from WC to COMPLETELY NORMAL. I continued to be completely normal during the 6 months of infusions. We had a barbeque at out house for the 4th of July. I was walking/talking completly normal. No cane, no balance problems, no numbness..... A neighbor came up to us and asked, if I was the young lady that she saw in the WC. She couldn't beleive her eyes how I was. I had a little pump (High Heel) on. Music was playing and I was on cloud nine. OK, I had my LAST infusion....the next 3 months would be going in for MRI's/bloodwork. The very NEXT month of my LAST infusion I started to loose my balance a little. It was amazing how I started to loose my balance. It has been 5 years since I had the Tysabri, and I am very fortunate that I did not go back in to a WC.

I know this is a long email but all I have to say is that Tysabri worked wonders for me. Yes, I was a guinny pig and I chose to do that. I have NO regrets at all and once the Tysabri is approved I'm going back on it. The good news about Tysabri is that it is in a different catagory than the ABC/Rebif drugs. It has to do with the blood brain barier. My mom, hubby, daughter, neighbors all just shook their head in disbeleif to see how I went from WC to normal. I can tell and give everyone hope in regards to this........I was in the WC and had NO feeling from waist down and somehow my mylan repaired itself. Over 60% of patients on the study had good results. Yes, it was very unfortunate about the latest tradegy with the Avonex/Tysabri patient that died. That was the chance that I took too, when I signed on the dotted line to be in the study.

Sharon, I'm glad to here that your Doctor is for the Tysabri. As we all know it is a very touchy subject. Reviewing the results of the study though says that something is there..................I didn't have any side affects that I remember. I was just so excited from WC to walking that I didn't pay much attention if I did. The good news is that it is MONTHLY and it is an INFUSION. Just like all of you receiveing the steroids through infusion. This is how I look at it. I'm currently on the Rebif shots and I don't know if it is helping me, of course since it is for future problems to slow it down. But since I saw it with my own eyes what the Tysabri did, I have to say that there is no better treatment for ME. I hope I didn't make you fall asleep with this long email.

LOL

Hugs

Darlene

Kickin Cane Covers

http://www.canecovers.org/

[Guest guest]

Gee, I will keep you in my prayers!!!! Here I complain about taking 3 shots a week with the Rebif. Is your body marked up with red welts. I only take my Rebif shots on the left/right hip/buns area. It is always sore and you can visable see my marks. Monday night when I took my Rebif shots, I had a BAD night. My whole body felt like sand paper and I felt like I was freezing. My feet always feel like frozen blocks as I call it.

Darlene

Kickin Cane Covers

www.canecovers.org

--------- Tysabri & Darlene

Sharon,

I'm finally responding to your email. I was on the Antegren/Tysabri for the Phase II study in 2000. One of 213 patients. Scientist called me after the study and said I have the real stuff. This was a year study...the first few months they did MRI's, blood work, you name it. Tysabri is a monthly INFUSION not a shot. This is no exageration on how GOOD the Tysabri did for me. Before the study I was on the Avonex and had to stop the Avonex for a month before testing me to see if I qualify for the study. The first 3 months the scientists did MRI's blood work, NO infusion yet. I wasn't feeling very well and I tell ya, I went from walking/cane to BAM a wheelchair. Looking back I feel that it was a foggy dream/nightmare and not reality. I had no feeling from the waist down and my hubby had to carry be up/down stairs in our house. I was basically Wheelchair bound. OK so here I am having a major exacerbation taking my walking away so I asked the Doc's to give me steroids since that had always helped me in the past with optic neurtis and legally I knew they couldn't refuse me to receive steroids. The first monthly Antegren/Tysabri infusion I had, I started to feel a little better, next month -second infusion...better....third month infusion the best. I went from WC to COMPLETELY NORMAL. I continued to be completely normal during the 6 months of infusions. We had a barbeque at out house for the 4th of July. I was walking/talking completly normal. No cane, no balance problems, no numbness..... A neighbor came up to us and asked, if I was the young lady that she saw in the WC. She couldn't beleive her eyes how I was. I had a little pump (High Heel) on. Music was playing and I was on cloud nine. OK, I had my LAST infusion....the next 3 months would be going in for MRI's/bloodwork. The very NEXT month of my LAST infusion I started to loose my balance a little. It was amazing how I started to loose my balance. It has been 5 years since I had the Tysabri, and I am very fortunate that I did not go back in to a WC.

I know this is a long email but all I have to say is that Tysabri worked wonders for me. Yes, I was a guinny pig and I chose to do that. I have NO regrets at all and once the Tysabri is approved I'm going back on it. The good news about Tysabri is that it is in a different catagory than the ABC/Rebif drugs. It has to do with the blood brain barier. My mom, hubby, daughter, neighbors all just shook their head in disbeleif to see how I went from WC to normal. I can tell and give everyone hope in regards to this........I was in the WC and had NO feeling from waist down and somehow my mylan repaired itself. Over 60% of patients on the study had good results. Yes, it was very unfortunate about the latest tradegy with the Avonex/Tysabri patient that died. That was the chance that I took too, when I signed on the dotted line to be in the study.

Sharon, I'm glad to here that your Doctor is for the Tysabri. As we all know it is a very touchy subject. Reviewing the results of the study though says that something is there..................I didn't have any side affects that I remember. I was just so excited from WC to walking that I didn't pay much attention if I did. The good news is that it is MONTHLY and it is an INFUSION. Just like all of you receiveing the steroids through infusion. This is how I look at it. I'm currently on the Rebif shots and I don't know if it is helping me, of course since it is for future problems to slow it down. But since I saw it with my own eyes what the Tysabri did, I have to say that there is no better treatment for ME. I hope I didn't make you fall asleep with this long email.

LOL

Hugs

Darlene

Kickin Cane Covers

www.canecovers.org

-------------- Original message --------------

Okay, Darlene... tell me how you felt on Tysabri. How long were you on it? Tell me all about it, please.

My neuro gave me a "talk" about Tysabri and said he wanted me to "really seriously consider" going on it when it comes back on the market. I AM seriously considering it. I really trust my neuro and I know he believes in this drug. I am so seriously considering it that I think I'll go see my other good former neuro, Dr. K., and see what he says. Dr. K. is the neuro who dxed me and I quit seeing him only because the insurance stopped covering him. But now I have Medicare and I know he takes that.

Sharon

Sharon (MSersLife creator/owner)

“One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge

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