The following are comments from patients or their families that are currently on Tysabri.
MS Patients For Choice
Beth
Infused October 25 and November 21, 2006
November 28, 2006
Both infusions came with ZERO side effects and a lessening of fatigue upon each infusion. As of November 28, 2006 I have noticed my left leg much stronger and again more strength all over. Left upper arm 'banding' feeling is now gone. Next infusion is scheduled for Dec 19, 2006 . I will then have to have my 3 month Neuro. exam. Thank you for the opportunity to 'blog' my progress.
Undisclosed
November 24, 2006
I have received 4 Tysabri infusions. I have noticed significant benefits since I’ve been on Tysabri. To me, one of the amazing benefits is that I have been able to do ½ hour step aerobics sessions, and my legs are fine afterwards. It’s amazing. I had been unable to do step aerobics for many years. It had been even longer that my legs had problems with walking after exercise. This medicine is amazing. I also have zero negative side effects after each infusion. I’m doing so well that my doctor has approved for 2 more treatments of Tysabri. My spasticity problems and balance problems are a ton better. They are significantly better.
Mike
Infused September 25, October 23 and November 20
November 2, 2006
I received two doses of Tysabri in early 2005. I am currently enrolled in the TOUCH prescription program for Tysabri therapy. I'm currently in week 6 after receiving my second dose last month. Current improvements noted are: substantial decrease in the chronic MS fatigue I have been burdened with for many years. It also seems I'm sleeping better at night and waking up feeling much more rested than before. My overall cognition seems to be improving. I am also napping much less than I had in the past. The improvements noted are very similar to the one's I experienced in 2005 after only 2 doses prior to the safety suspension. I was also recently suffering from occasional lower extremity/abdominal spasticity relapse and severe pain PRIOR to my 2 infusions in 2005 that never returned. I have noticed no adverse side effects at all and I was dosed without any Benadryl for both TOUCH infusions. I have been a long time sufferer of rheumatoid arthritis from previous sports injuries and knee surgeries. I have not been having any arthritic related pain in my knees or joints. The vision in my good eye has improved and I'm not experiencing any optic neuritis in that eye. My right eye is permanently damaged from severe optic neuritis (SON) I first experienced in 1985. I am totally blind in that eye. I don't expect my right eye to get much improvement because of the extent of damage and length of time since suffering the original exacerbation. Over all I'm very pleased at the progress I'm experiencing on Tysabri therapy. I was rated an EDSS 6 prior to initiation of TOUCH therapy. I am a previous interferon patient, Avonex (one month) and Betaseron user of almost ten years. In the previous 10 years of interferon therapy I never experienced what I'm welcoming now while on Tysabri therapy. This drug really works for me as I haven't had any problems or relapses since starting it in September. I am much less tired than I was before and also feeling much better after so many years with very little results, if any, with any of the older drugs.
Jan
Infused August 9, September 7, October 6 and November 2
November 6, 2006
My wife Janet has now received 4 infusions (since Tysabri was re-approved) and her response is very encouraging. Just prior to her first infusion she was at the lowest point in her disease progression. Her energy level was close to zero, her cognitive functions were at an all time low and her speech was very slurred. Her walking was to the point of not only using her walker but at times I would have to get on my knees and lift her feet for her and her legs were locked and she could not bend them to walk. Her vision was blurry, and her incontinence was very bad. With each infusion she has progressively improved to where her cognitive abilities are back to normal, her speech is normal, her incontinence problems have improved to the point that we can now travel to our son's home 2 !/2 hours away without any stops. Her vision has improved greatly, she is now bending her knees (not completely but much improved) and she began riding her exercise bike for short periods of time. Her hands were without feeling for about 3 to 5 years and the feeling is coming back. Her feet and legs were also without feeling and felt very heavy. As of yesterday she had some feeling back and they no longer felt heavy. Many of these improvements have come and then decreased only to return again in a few days. I would say that our feelings are all positive.
November 20, 2006
Jan continues to improve. The feeling has returned to her hands after over three years with no feeling. Now she is also having feeling return to her feet and legs after twelve years. Her walking improves from time to time so we believe that it is only a matter of more infusions before she gets that back also. She gets her fifth infusion on the afternoon of Dec. 1. Maybe that will be the one. Her speech has improved to the point where she was prior to her ever getting MS. We are both amazed at her constant improvement. It was sure great to hear that Heather's infusion went well and are hoping that improvement is not far behind.
Michele
Infused August 30, September 28 and October 31
November 10, 2006
It has been 3 months on Tysabri and my wife continues to do well. Has Tysabri eliminated her MS and all its damage? Unfortunately, no. But we never anticipated it would. However, her quality of life has greatly improved and we both feel she is on the most efficacious medicine to reduce relapses and slow the progression of additional disability.
So let's recap my wife's experiences over the last 6 months. Before Tysabri, and while on Avonex, she would receive an intramuscular injection every Tuesday evening. She could not work on Wednesdays. She could not drive on Wednesdays. All day would be spent at home with a constant headache and fatigue. She would attempt to sleep most of the day until the symptoms ended. 52 days per year, every year, were devoid of any meaningful activity. NONE of her MS symptoms improved on Avonex. The only reason she remained on Avonex was in hopes of reducing the frequency of relapses (30%) and the progression of disability (about 35%).
So how has her life changed after 3 months on Tysabri??
1. She receives her infusion early in the AM and experiences some fatigue until mid day. She has no headache, no flu-like symptoms and by the afternoon can function normally. So instead of 4.5 days / month lost (on Avonex) she loses .5 days/ month on Tysabri.
2. Her quality of life has greatly improved. While she still experiences some fatigue, she claims to have had a 70-80% improvement. There is no question regarding this improvement as I have the credit card bills from her shopping trips to back her claims. Her episodes of blurred vision have essentially ceased. This has removed many of her self imposed driving restrictions. She is more productive at work and fellow employees have stated that she appears less tired and that her eyes don't appear to close anymore. Neighbors have commented that she seems to be walking more confidently.
Lastly, and MOST important, is the fact that while on Tysabri the statistics indicate a 66% reduction in relapses and a 42% reduction in the progression of disability. There is no question in my mind that within the next 2-3 years Tysabri will emerge the dominant medicine in the treatment of MS.
There is only one factor that can stop Tysabri, PML!!! It's the wild card. We can all hope and try to convince ourselves that the risk is extremely rare. Unfortunately, no one can state with any degree of certainty (at this time) the actual risk of PML.
Lauren
Infused October 16 and November 16
Wheelchair bound, but after two infusions was able to stand briefly and take a step.
November 9, 2006
I totally freaked my caregiver out this am(lol), when he got up, and found me 1) out of bed (which I accomplished with a lot of difficulty on my part -- I won't try THAT again until after my 2nd infusion) and merrily sitting on the toilet with a fresh cup of coffee that I made for myself (while he was snoring away in his room at the other end of the house)! The first words out of his mouth were, " What the...How did you do that???" (I think I detected a slight "shrill" in his voice, and his unspoken chastisement of, "but what if you had fallen?"...ok ok).
Not much more improvement for me, other than what I've reported previously, but my small improvements have been sustained . . . for those, I am so very grateful . . .
November 19, 2006
I took my first step last night in over a year!!! Woooohoooooo! It was only one step with my right foot (with me hanging onto my caregiver, and my caregiver holding me around my waist-in the event I fell) and lifting my foot to take that step was like lifting a 25 lb weight with only one finger (it took all the strength and concentration I had, and it wasn't very graceful), but I did it! It's a good thing he had me by the waist as I collapsed afterwards (my stupid left foot was just plain frozen and would not move at all), but I started crying happy tears of joy. My hopes to walk again with Tysabri's help just went off the scale! Now I'm pushing my caregiver for more p.t. exercises, but I'm taking it slow, so no worries. Couldn't take that one step again yet to day, but maybe I can try again later tonight...
November 20, 2006
I could not take another step late last night, but I took a tiny one today with a lot of effort again on my part. However, I am not discouraged in the least, because I could stand today unassisted by my caregiver for up to 1 and 1/2 minutes while holding onto a grab-bar (he had a stopwatch -- lol), without my legs spasming and without my knees buckling under me during the time I was standing. Nice trade off if you ask me, considering I could only do this for a few seconds the day before my 2nd Tysabri infusion (11/16)! Come on December!
Midge
Infused September 21, October 19 and November 16
November 20, 2006
I had my third infusion of Tysabri on Thursday, November 16, 2006. To date, I have only experienced a slight headache the day after my first infusion. Subjectively, I am noticing a decrease in my fatigue, the ability to walk approximately 500 feet now without an assistive device (cane or scooter), and my ability to multi-task has improved.
Penny
Infused October 6 and November 3
November 4, 2006
Had my #2 infusion Friday. Everything went fine; I walked out of there with a bounce in my step, but I wasn’t dragging my left foot as much as I had been. It seems with each exacerbation my sides take turns being weak. Last time it was my left side’s turn. But ah ha I am fooling it. The big test will be when I go out to get my mail bare foot and if my left toes don’t come in scraped I will know there is progress. My fatigue seems to be held in bay. I felt so good last week I was thinking of either going back to work or going back to school and getting my doctorate – that is how positive I feel.
November 13, 2006
I walked around the mall today without a cane or walker. I’m beat but still typing.
November 13, 2006
I am tired. Did too much the last few days, and my legs feel it. I still have not felt one moment of fatigue, but my body is feeling my age. My next infusion is on December 1 st, and I am enthused and eager to get the next infusion
Chester
Infused August 18, September 15, October 13 and November 10
November 10, 2006
Now after my fourth infusion, my benefits from Tysabri have not changed from those I experienced almost immediately following my first infusion:
-- Somewhat Improved balance; and
-- Reduced side affects of minor increase in fatigue once every 4 weeks rather than Avonex flu-like side effects once per week.
The hope is that my disease is progressing at half the rate it previously was. Unfortunately, Tysabri has not affected my overall MS fatigue, nor the numbness and loss of strength on my left side causing me to limp.
© 2006 MSPATIENTSFORCHOICE
Beth
Infused October 25 and November 21, 2006
November 28, 2006
Both infusions came with ZERO side effects and a lessening of fatigue upon each infusion. As of November 28, 2006 I have noticed my left leg much stronger and again more strength all over. Left upper arm 'banding' feeling is now gone. Next infusion is scheduled for Dec 19, 2006 . I will then have to have my 3 month Neuro. exam. Thank you for the opportunity to 'blog' my progress.
Undisclosed
November 24, 2006
I have received 4 Tysabri infusions. I have noticed significant benefits since I’ve been on Tysabri. To me, one of the amazing benefits is that I have been able to do ½ hour step aerobics sessions, and my legs are fine afterwards. It’s amazing. I had been unable to do step aerobics for many years. It had been even longer that my legs had problems with walking after exercise. This medicine is amazing. I also have zero negative side effects after each infusion. I’m doing so well that my doctor has approved for 2 more treatments of Tysabri. My spasticity problems and balance problems are a ton better. They are significantly better.
Mike
Infused September 25, October 23 and November 20
November 2, 2006
I received two doses of Tysabri in early 2005. I am currently enrolled in the TOUCH prescription program for Tysabri therapy. I'm currently in week 6 after receiving my second dose last month. Current improvements noted are: substantial decrease in the chronic MS fatigue I have been burdened with for many years. It also seems I'm sleeping better at night and waking up feeling much more rested than before. My overall cognition seems to be improving. I am also napping much less than I had in the past. The improvements noted are very similar to the one's I experienced in 2005 after only 2 doses prior to the safety suspension. I was also recently suffering from occasional lower extremity/abdominal spasticity relapse and severe pain PRIOR to my 2 infusions in 2005 that never returned. I have noticed no adverse side effects at all and I was dosed without any Benadryl for both TOUCH infusions. I have been a long time sufferer of rheumatoid arthritis from previous sports injuries and knee surgeries. I have not been having any arthritic related pain in my knees or joints. The vision in my good eye has improved and I'm not experiencing any optic neuritis in that eye. My right eye is permanently damaged from severe optic neuritis (SON) I first experienced in 1985. I am totally blind in that eye. I don't expect my right eye to get much improvement because of the extent of damage and length of time since suffering the original exacerbation. Over all I'm very pleased at the progress I'm experiencing on Tysabri therapy. I was rated an EDSS 6 prior to initiation of TOUCH therapy. I am a previous interferon patient, Avonex (one month) and Betaseron user of almost ten years. In the previous 10 years of interferon therapy I never experienced what I'm welcoming now while on Tysabri therapy. This drug really works for me as I haven't had any problems or relapses since starting it in September. I am much less tired than I was before and also feeling much better after so many years with very little results, if any, with any of the older drugs.
Jan
Infused August 9, September 7, October 6 and November 2
November 6, 2006
My wife Janet has now received 4 infusions (since Tysabri was re-approved) and her response is very encouraging. Just prior to her first infusion she was at the lowest point in her disease progression. Her energy level was close to zero, her cognitive functions were at an all time low and her speech was very slurred. Her walking was to the point of not only using her walker but at times I would have to get on my knees and lift her feet for her and her legs were locked and she could not bend them to walk. Her vision was blurry, and her incontinence was very bad. With each infusion she has progressively improved to where her cognitive abilities are back to normal, her speech is normal, her incontinence problems have improved to the point that we can now travel to our son's home 2 !/2 hours away without any stops. Her vision has improved greatly, she is now bending her knees (not completely but much improved) and she began riding her exercise bike for short periods of time. Her hands were without feeling for about 3 to 5 years and the feeling is coming back. Her feet and legs were also without feeling and felt very heavy. As of yesterday she had some feeling back and they no longer felt heavy. Many of these improvements have come and then decreased only to return again in a few days. I would say that our feelings are all positive.
November 20, 2006
Jan continues to improve. The feeling has returned to her hands after over three years with no feeling. Now she is also having feeling return to her feet and legs after twelve years. Her walking improves from time to time so we believe that it is only a matter of more infusions before she gets that back also. She gets her fifth infusion on the afternoon of Dec. 1. Maybe that will be the one. Her speech has improved to the point where she was prior to her ever getting MS. We are both amazed at her constant improvement. It was sure great to hear that Heather's infusion went well and are hoping that improvement is not far behind.
Michele
Infused August 30, September 28 and October 31
November 10, 2006
It has been 3 months on Tysabri and my wife continues to do well. Has Tysabri eliminated her MS and all its damage? Unfortunately, no. But we never anticipated it would. However, her quality of life has greatly improved and we both feel she is on the most efficacious medicine to reduce relapses and slow the progression of additional disability.
So let's recap my wife's experiences over the last 6 months. Before Tysabri, and while on Avonex, she would receive an intramuscular injection every Tuesday evening. She could not work on Wednesdays. She could not drive on Wednesdays. All day would be spent at home with a constant headache and fatigue. She would attempt to sleep most of the day until the symptoms ended. 52 days per year, every year, were devoid of any meaningful activity. NONE of her MS symptoms improved on Avonex. The only reason she remained on Avonex was in hopes of reducing the frequency of relapses (30%) and the progression of disability (about 35%).
So how has her life changed after 3 months on Tysabri??
1. She receives her infusion early in the AM and experiences some fatigue until mid day. She has no headache, no flu-like symptoms and by the afternoon can function normally. So instead of 4.5 days / month lost (on Avonex) she loses .5 days/ month on Tysabri.
2. Her quality of life has greatly improved. While she still experiences some fatigue, she claims to have had a 70-80% improvement. There is no question regarding this improvement as I have the credit card bills from her shopping trips to back her claims. Her episodes of blurred vision have essentially ceased. This has removed many of her self imposed driving restrictions. She is more productive at work and fellow employees have stated that she appears less tired and that her eyes don't appear to close anymore. Neighbors have commented that she seems to be walking more confidently.
Lastly, and MOST important, is the fact that while on Tysabri the statistics indicate a 66% reduction in relapses and a 42% reduction in the progression of disability. There is no question in my mind that within the next 2-3 years Tysabri will emerge the dominant medicine in the treatment of MS.
There is only one factor that can stop Tysabri, PML!!! It's the wild card. We can all hope and try to convince ourselves that the risk is extremely rare. Unfortunately, no one can state with any degree of certainty (at this time) the actual risk of PML.
Lauren
Infused October 16 and November 16
Wheelchair bound, but after two infusions was able to stand briefly and take a step.
November 9, 2006
I totally freaked my caregiver out this am(lol), when he got up, and found me 1) out of bed (which I accomplished with a lot of difficulty on my part -- I won't try THAT again until after my 2nd infusion) and merrily sitting on the toilet with a fresh cup of coffee that I made for myself (while he was snoring away in his room at the other end of the house)! The first words out of his mouth were, " What the...How did you do that???" (I think I detected a slight "shrill" in his voice, and his unspoken chastisement of, "but what if you had fallen?"...ok ok).
Not much more improvement for me, other than what I've reported previously, but my small improvements have been sustained . . . for those, I am so very grateful . . .
November 19, 2006
I took my first step last night in over a year!!! Woooohoooooo! It was only one step with my right foot (with me hanging onto my caregiver, and my caregiver holding me around my waist-in the event I fell) and lifting my foot to take that step was like lifting a 25 lb weight with only one finger (it took all the strength and concentration I had, and it wasn't very graceful), but I did it! It's a good thing he had me by the waist as I collapsed afterwards (my stupid left foot was just plain frozen and would not move at all), but I started crying happy tears of joy. My hopes to walk again with Tysabri's help just went off the scale! Now I'm pushing my caregiver for more p.t. exercises, but I'm taking it slow, so no worries. Couldn't take that one step again yet to day, but maybe I can try again later tonight...
November 20, 2006
I could not take another step late last night, but I took a tiny one today with a lot of effort again on my part. However, I am not discouraged in the least, because I could stand today unassisted by my caregiver for up to 1 and 1/2 minutes while holding onto a grab-bar (he had a stopwatch -- lol), without my legs spasming and without my knees buckling under me during the time I was standing. Nice trade off if you ask me, considering I could only do this for a few seconds the day before my 2nd Tysabri infusion (11/16)! Come on December!
Midge
Infused September 21, October 19 and November 16
November 20, 2006
I had my third infusion of Tysabri on Thursday, November 16, 2006. To date, I have only experienced a slight headache the day after my first infusion. Subjectively, I am noticing a decrease in my fatigue, the ability to walk approximately 500 feet now without an assistive device (cane or scooter), and my ability to multi-task has improved.
Penny
Infused October 6 and November 3
November 4, 2006
Had my #2 infusion Friday. Everything went fine; I walked out of there with a bounce in my step, but I wasn’t dragging my left foot as much as I had been. It seems with each exacerbation my sides take turns being weak. Last time it was my left side’s turn. But ah ha I am fooling it. The big test will be when I go out to get my mail bare foot and if my left toes don’t come in scraped I will know there is progress. My fatigue seems to be held in bay. I felt so good last week I was thinking of either going back to work or going back to school and getting my doctorate – that is how positive I feel.
November 13, 2006
I walked around the mall today without a cane or walker. I’m beat but still typing.
November 13, 2006
I am tired. Did too much the last few days, and my legs feel it. I still have not felt one moment of fatigue, but my body is feeling my age. My next infusion is on December 1 st, and I am enthused and eager to get the next infusion
Chester
Infused August 18, September 15, October 13 and November 10
November 10, 2006
Now after my fourth infusion, my benefits from Tysabri have not changed from those I experienced almost immediately following my first infusion:
-- Somewhat Improved balance; and
-- Reduced side affects of minor increase in fatigue once every 4 weeks rather than Avonex flu-like side effects once per week.
The hope is that my disease is progressing at half the rate it previously was. Unfortunately, Tysabri has not affected my overall MS fatigue, nor the numbness and loss of strength on my left side causing me to limp.
© 2006 MSPATIENTSFORCHOICE
http://mspatientsfo
posted by Bill at 2:12 PM
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