Bill - Arizona

Infused two times since Tysabri was re-approved in June 2006.

March 22, 2007

First Infusion March 20, 2007.

Finally after trying for over a year, I received my first Tysabri infusion.

Initially I learned about T through my VA neurologist. Unfortunately T is only available currently from two VA centers and Phoenix isn’t one of the centers. Thankfully it was covered under Medicare which I had applied for last year, I’m only 58 but have been on Social Security for roughly 4 years due to my inability to work.

This drug is a blessing. I continued to sink first on Avonex and then Copaxone more recently. The first day out I felt like I’m was already seeing minor improvements I never seemed to experience on the other drugs. Fatigue was diminishing plus bladder control and muscle strength seemed to be improving. I am actually looking forward to what the future holds.

By day 2, I began feeling the cold floor in my bare feet. Also, cognitive functions seem to be getting better as I can remember names I had been struggling to remember.  I can’t wait for my next infusion.

April 23, 2007

Second Infusion April 17, 2007

My second infusion was quicker and easier than my first. The center was very efficient and I'm set up now thru September.

Improvements are still being noticed. Even the minor improvements noticed before are continuing to improve, ie; fatigue, bladder control and name recognition, etc. I'm trying to exercise along with standing longer after being WC bound for 18 months. I'm also back working on my book that nearly stopped during the same period. Other improvements noticed include: Sleeping through the night for the first time in more than 10 years; Ocassional slurred speech patterns have stopped; and finally; My left leg is no longer swollen.

I can't wait to see what other improvements might come with further 'T' infusions.

Jim - Pennsylvania

Infused seven times since Tysabri was re-approved in June 2006.

December 07, 2006

January 05, 2007

Had my 3rd infusion on 3 January and it went just like the prior two infusions, No Problems!! I've noticed that after the infusions I fall asleep okay at night, however I wake up in the middle of the night full of energy. It's reminds me of the energy boost I felt after I received a steroid infusion. What I do when I'm unable to sleep is I'll go stair walking and stretching to wind myself down. I then eat breakfast and lay back down for a nap. I've had MS for 12 years. Prior to taking Tysabri I was taking Avonex & Copaxone along with a monthly steroid infusion.

The positives I've noticed is my cognitive thinking has improved, the spasticity in my leg has also improved, my gait @ balance have improved. To borrow a quote from Pat Croce," I feel great and you will too!" 

March 11, 2007

Last infusion March 9, 2007

I was diagnosed in November of 1994. I had lower back pain and was initially misdiagnosed as having a herniated disc in my back. I had a great deal of pain in my lower back. I had a seizure in July of 1997 and that lead to confirming I had RRMS. I began taking Copaxone, all was well until April 2003. The MRI's of my brain revealed increased lesions. My medicine was switched from Copaxone to Avonex,(the quoted "Gold Standard for RRMS") The switching to Avonex did little to stop the progression. I immediately began to feel less strength in my right leg and increased spasticity in the same leg. My cognitive thinking became clouded & disorganized. I felt increasing sensation of needing to urinate but not having to go when I went into the bathroom. Copaxone was added back to the mix in conjunction with Avonex in April 2004. I figured I had double the protection, WRONG!

I experenced 2 major flare ups in March & December 2005. I was treated with steriod infusions both times. In May 2006 I began receiving monthly steriod infusions. I didn’t feel like me except for the 2 weeks following my steriod infusions. I experienced another seizure on November 3rd and wound up spending 15 days in the hospital. When I was released from the hospital I required a walker to get around and a chair for me to shower.

 When Tysabri was reintroduced back on market, I met with my neuro in early September 2006. He along with his staff and a Representative from Biogen began working with my insurance to have me approved for Tysabri. I discontinued taking Avonex immediately and ran out what was left of my Copaxone. This delayed my first infusion one week. That delay pushed my first infusion date back to November 6th.

Well, within 1 day I felt like the fog lifted…I started feeling like the old me was coming back. The next week I had a appointment with PT/OT and a nurse at home. My leg strengthened enough after a few weeks that I could shower & urinate standing up. I began moving around using just a cane. I switched my PC doctor & hospital in December. I saw my new doctor the beginning of January. By then I had 3 Ty infusions. I underwent an MRI and an EEG and both came back favorably. No new lesions and no hot spots!

I began taking PT at the hospital fitness center twice a week. I was given exercises to do every other day and a daily stretching routine recently. The feeling in my legs during PT felt as if my muscles had not been used in years. When I woke up in the morning I felt a brief period of pain much like the pain I felt after playing football or running long distances. The pain eventually went away and I felt increasing strength in my legs. I just underwent my 5th infusion and for the first time since my seizure I was able to go out to dinner without using a cane to get around, I’m now walking almost normal and my thinking is better than it’s been in years.

I still have numbness on my right hand and tremors in my left hand, but it’s a lot better than what it was like before the infusion. I take Keppra for the seizures and Clonazepam for the tremor. I do get a good nights sleep and I feel energetic during the day. I have not returned to work in part because my license was automatically suspended for 6 months. I do look forward to returning to work and driving no later then this May.

April 23, 2007

6th Infusion was done on Friday, April 6th.

I experienced no problems during and after the infusion. We went out for a nice dinner with friends at Outback afterwards. My appettite was good as I had an appetizer, soup, 9oz OB Special, and dessert.

I've noticed the day after I feel much like I felt after having a steriod infusion, my balance & gait are improved and I walk around without my Yoda stick quit a bit. I've found that the spactisity is still with me but it is slowly improving. I used to feel the need to lay down after about an hour of sitting to alleviate the pain I was feeling in my right leg, however I've noticed I'm better able to stay seated with no pain in my right leg. It used to be when I arose from a seated position I felt like my legs required a period stretching before I started to move around however now I don't feel the need to stretch as much before I start moving about. I do get a restful nights sleep, I'm one of those people that only requires about 6 hours a night. The tremors in my left arm continue, the numbness in my right hand has dissipated a bit, my cognitive thinking is improved.

I've told a friend that is currently taking Avonex, how I felt as if a light was lite in my head after the first infusion. My thoughts became clearer, and my processing became better organized. I'm looking forward to what the future holds for me.

May 05, 2007

I had my 7th infusion on May 2nd.

I have realized an improvement in my strength & energy level. The week prior my wife had taken me to a track for a walk to stretch out my legs. I barely made it onto the track before we returned back to the car. We returned back because I was not feeling comfortable and the track appeared overwhelming. On May 4th I asked my wife to try walking it again with me. The walk was a success, it was invigorating and helped restore some hope to me. I'm living proof that Tysabri is a positive addition to the different DMD's available on the market.

I met with my Neuro immediately afterward and I made sure to let him know how I felt. The baseline tests given to me showed I was at or above the tests given to me in January. I can't wait/looking forward to my next infusion.

Noreen

Infused three times since Tysabri was re-approved in June 2006.

January 25, 2007

I had my third Tysabri infusion on Jan. 12 and I want to share the little things I've been noticing:

Once in a while, I take a few "normal" steps. The numbness in my left hand comes and goes, but has nearly gone away. I am not so tired. The ringing in my right ear has lessened and has even gone away for a few seconds at a time. Sometimes I can freely move my right leg. I've even gone outside a few times! My attitude is even more positive.

Steve - Utah

Infused nine times since Tysabri was re-approved in June 2006

February 04, 2007

I have been diagnosed for 25 years and I consider myself fortunate that my disease has progressed slowly with relatively few major relapses. My problems are tingling along with numbness and pain in my legs and hands, mild spasticity, occasion vision problems, cognitive issues, and last but not least fatigue.

After my last major relapse 10 years ago I was one of the first patients to receive Avonex which I continued with for 9 months. Since I was coming off a bad exacerbation I cannot say how much if at all this medication help me. What I can say is the side effects (flu like symptoms for 2 days a week) were unbearable. At this time Copaxone was just becoming available and I was excited to at least have a medication that didn’t have a lot of side effects. I stayed more or less on Copaxone for around 8 years until I could no longer tolerate the injections. Did Copaxone help me? Possible, since I had no major relapses in that time but what I think is more likely is that my disease was becoming progressive in this time and that my outcome would have been the same whether I was on the drug or not. There were times (months) I would go without the shots and it seemed to make no difference.

When Tysabri first became available in 2005 I could tell after only 2 infusions that this drug was different. The most common discussion I had with my neurologist at this time was, could this be a result of a placebo effect. It seemed to good and too fast to be real but I can assure you it was real. When Tysabri was finally re-approved last year I was one of my neurologist first patients to ask for and receive the drug. He knew if he didn’t agree I would find another doctor. The Touch process at that time (September/October) was still getting the kinks worked out but with perseverance by all involved I was approved and infused a month later.

With my first 3 infusions I had some minor side effects that I didn’t recall having the first time around. These included some mild joint pain and overall just feeling off for a day or two. I attribute this to my being among those who received the drug in 2005 since the occurrence of side effects and occasional allergic reactions is higher in this group. Regardless, by the time of my 4th infusion the side effects were hardly noticeable and by my 5th and 6th infusion they were gone.

So what have been my benefits this time around? I would say for one thing that my expectations were overly optimistic when I first started, largely due to an exaggerated recollection of my first experience. But the benefits are undeniable and becoming more apparent with time and additional treatments. I would say that Tysabri has positively impacted every one of my major symptoms and even improved some that I was unaware of previously. Fatigue is greatly reduced; the tingling and even some of the numbness and pain are greatly diminished. My overall strength and coordination is much better. My vision is now consistently good where before it was only occasionally so. I have more mental energy and my concentration and alertness are improved. I’ve even noticed a heightened enjoyment of music.

The fundamental takeaway from my experience is that based on the scientific data and my own personal experience I no longer live in fear of my next major relapse. Rather than wondering how much I will lose in the coming years I can now wonder what additional improvements I may see in the months and years to come. The interferons and Copaxone may have been better than nothing but Tysabri is a real deal.

April 23, 2007

I just had my 9th infusion today and I'm please to report no side effects, nada, nothing negative.  My tank is now full for another 28 days and I'm looking forward to a beautiful drive in the spring weather, a chance to smell the flowers (love the lilacs), see the vivid green of the trees and vibrant colors bursting out everywhere.  Feel alive again.

Like many others with MS, I have had my worst exacerbations in the spring and early summer which has dampened my enthusiasm for what was normally my favorite time of the year.  But this year I have no such in trepidation.  The specter of an attack does not loom over me.  Each month my vision improves, a troubling pain and numbness in my thigh lessens, the tingling, stiffness, and weakness in my legs is for the most part gone, and I have greater energy and coordination.  I have experienced a steady improvement that I fully expect will continue for many months to come.  Slow and steady with the occasional down days but without a doubt the trend is up.

Please keep in mind that your mileage may vary but for me taking Tysabri was one of the best decisions I have ever made.

AJ - North Carolina

Infused one time since Tysabri was re-approved in June 2006 .

January 30, 2007

My condition immediately before my first infusion was that I have a slight limp, tremors, spasticity, muscle cramps, and my balance is off.  I miss getting on the treadmill and running.

After one infusion I have noticed improvement in my walking, and my wife says my right hand (where I suffer from tremors) is steadier already.  My neuro thinks we may have caught this monster early enough with Tysabri to get me back to almost 100%.  I am a police officer in North Carolina but MS has put me on light duty since November 8, 2006 when I had really bad spasticity and muscle spasms.  Now I am on extended light duty until I get three Tysabri infusions done, as my neuro expects to see vast improvements by then.  I know how it feels to not be able to do the jobs we love.  I miss my work SO MUCH!!!!!!!!
 
I think one of the biggest enemies of MS is not staying active, positive, and hopeful.  Active is your own doing. The hopeful and positive come from my neuro and the meds.

Robin B. - Florida

Infused 1 time since Tysabri was re-approved in June 2006.

February 01, 2007

Infused on Jan. 18, 2007

I was diagnosed in September of 2006 with 6 lesions.  I had severe weakness on my right side with a great deal of pain on my right arm from the shoulder to my fingers.  I also had frequent headaches. Within 4 months I had 4 additional lesions in my brain and one on my spinal cord.  Also at the time of my infusion I was having an episode of optic neuritis which was confirmed by enhancement on my last MRI.

I was also having a lot of cognitive difficulties.  I didn’t feel at all like me . . .  as if who I am disappeared.  With every new lesion came a full exacerbation where at times I didn’t even know where I was until they gave me the steroids that I needed.

Symptom improvements after first Tysabri infusion:   Well, within 2 hours I felt like the fog lifted --  I started feeling like the old me was coming back.  I could drive without having to concentrate so much, I also felt stronger.

The next day I had an appointment with my PT/OT and my grip strength went up more than 30 lbs and my leg strength doing a press went up over 90 lbs.

I am now walking almost normally, my vision is back to normal and my thinking is better than it has been in a year.

I still have numbness on my right side and pain in my arm, but it’s a lot better than what it was like before the infusion.  I only need half of the pain medicine I was taking before the infusion.

I was very tired for the first week after the infusion but that has now passed.

Vern

Infused three times since Tysabri was re-approved

January 30, 2007

I am a 42 year old man who was diagnosed with MS in September of 1998.  I have been in a wheelchair and using Canadian Crutches to get around.  I started Tysabri in November 2006.

After the third infusion, I can now walk without ANY assistance, I quit parking in handicapped spots, my voice sounds healthier, and my memory and cognition are vastly improved.  Tysabri, to me, is the closest thing to a cure for MS.

Tammy

Infused three times since Tysabri was re-approved.

January 29, 2007

I've had 3 infusions and am THRILLED with my results! I'm having absolutely NO side effects with Tysabri! I used Avonex for the first 10 1/2 years of my MS (until it quit working) and then Rebif for 4-5 months. I felt helpless while my symptoms gradually got worse.

Since starting Tysabri, I have increased sensations in my feet and lower legs and my balance appears to be improving as well! If it's working from my feet up to my head, maybe my memory and cognitive problems are next??

This next statement is something only the ladies will appreciate, but for the first time in 11 1/2 years, I can actually FEEL myself shaving my legs!! I know that probably sounds pretty strange to the men out there -- but it's HUGE to me -- I've just been going through the motions, but for the past 6 weeks I actually FELT the razor on my calves! I got so used to NOT feeling it that to actually be able to feel it is pretty strange. Its winter and I don't mind shaving my legs!

I also love not having to remember to give myself a shot. My cognitive problems are the worst! I'd switched to Rebif right before I got on Tysabri and just remembering to do that 3 times a week thing was hard to remember!

Cody

Infused four times since Tysabri was re-approved.

January 10, 2007

My name is Cody, I have been diagnosed since November of 2005, just 3 days before the birth of my second daughter, her name by the way is Rileigh. Lets take it even further back than that, lets start out in September of 2005. I am walking through the mall with my wife and kid (Caitlin) and I start complaining to my wife that the left side of my body feels like it is on pins and needles, she gets worried, "could it be a stroke"? she says. So, we go to the ER, they say it is stress, it will go away..... it does not. Next step, I go to the doctor, just a regular ole' family guy, he says lets do some tests, by the way, at this point, I have started to hurt (nerve pain just sucks) and he "can't" do anything because he does not know why the pain is there. I get the tests done and as he is looking at the MRI's he says to me and my wife (Dawn) well, it looks like MS, as a matter of fact, I am pretty darn sure it is MS, but I am not qualified to say that so I really can't, but it really does look like MS, oh you need to go see this guy. I forgot something, I am 26 yrs old, and the only income for my brand new family, been married almost 4 yrs at this point. Anyways, I finally get in to see who is now my neurologist (9 weeks later) and he says to me, lets get some more tests, you cannot be diagnosed with those tests alone. I get those done, and woo hoo!!! ding ding ding I am a winner, I get pain meds and IV Solumedrol for my prize!!!! Did I mention that while I am getting my IVSM my wife is in the maternity ward with our brand new baby. 

Okay, I have MS now, lets go over what it has done to me, and I have done to it, and trust me, it has done more to me, than I have done to it, until recently, but you must wait for that. We are going to skip ahead a few months, my baby is now a TANK and I can't hardly hold her because of MS, my vision is going in and out due to MS, I have severe pain that only Oxycontin touches, and even then it don’t even take it away, it just kinda pushes it back a little bit, I have severe loss of balance and coordination due to MS, I have short term memory loss, and "brain fog" due to MS, did I mention pain, because there has been LOTS OF PAIN!!! and you know why the pain is there, our good ole' buddy MS. There truly is more, but there are somethings that I just ain't gonna talk about, but to list two more things, urine retintion and PAIN!!!

That is a short overview of what MS has done to me, now, lemme tell ya'll what I have done to MS. My first therapy was Avonex, it wasn't that bad, until the night that I stuck myself in the bone with the needle, ( I am a little guy) but things took a turn for the worse when like my 5th or 6th shot I couldn't breath anymore, my doc figured I am allergic to it, I tend to agree with him on that one. Since my MS has come on hard and fast my doc wanted to keep me on a therapy, because as we all know a little bit is better than nada, I started Copaxone. The only reason I started Copaxone is because we didn't know when Tysabri was getting re-released, oh one thing though, I am almost bed bound now, because of the pain and the fact that my legs at this point liked to quit me. Imagine this.... You are 26 you have been married 5 years to a smokin hot woman, you have 2 beautiful baby girls and you can't play with any of them.

Life at this point is VERY difficult, well, along comes this little drug we call Tysabri, and HOLY COW!!! after 2 infusions, I am a different person, almost normal, I can remember more things, and I can play with the kids too. I have had 4 infusions now, my baby is now 13 months old, and 28.5 lbs, and I literally can throw her above my head, I can put my 4 year old daughter on my shoulder and run around for a few minutes, granted doing that tires me out, but the point is, I CAN DO IT!!!! Before Tysabri, that was just another thing that MS had control of, now I have the control, granted, I am still not working, but at least I now have a light at the end of the tunnel, where as before there was nothing there. I'd say that I am a Tysabri success story, I met Mike at Boys Night Out, he turned me on to this site, and asked me to tell my story, hopefully this is what he was looking for, and hopefully for those of you out there that are on the fence with Tysabri, this story helps you out a little bit, I will continue with further updates as they arrive, and they seem to be arriving monthly so hopefully I'll be writing a lot in here, thank you for reading.

Judy

Infused six times since Tysabri was re-approved in June 2006.

December 23, 2006

For about a year and three months, I was on Avonex. It did nothing for me but cause me suffering with Flu-like symptoms for two days out the week. Finally Tysabri was approved November 23, 2004 and I went through three infusions.

There after, right away I noticed the improvements. When they pulled it off the market, February 2005, I hesitated going on any other therapy because I wanted to be ready for its return. I never anticipated the waiting time to be 1 1/2 years later. During that time I went down hill quickly. It affected my walking, my bladder and my level of fatigue. Thank god I never had cognitive problems. Although I hear Tysabri works great on MS people with cognitive issues. At last June 2006, just missed my birthday, Tysabri, got approved again, Hooray! It was not easy to get the drug right away. There was the approval of the place that was going to be infusing and fighting with the insurance company to pay for the drug, but we won the battle. It finally happened for me September of this year. Now after four infusions my experience has been good but a little slower that the first time. Of course there is more damage now to contend with, for my disease has progressed.

In retrospect I have noticed the following: My fatigue has diminished and my energy level has increased throughout most of the day especially at night. I hear it has affected others in the same way. I have noticed more leg strength especially when getting out of the car or up from a sitting position. I take longer steps still holding the walker, my cane, a person, or railing. I don’t drag a leg anymore I step with it. What is really mind-blowing is that late at night after 10:30 my spasticity disappears, I am not stiff and I get a boost of energy, at this time I exercise. I get on the step master and increase the amount by 10 steps every night. I am currently up to 300 steps. Several times I make it to 400 steps with each leg.

I count 1, 1; 2, 2; 3, 3 etc. Afterwards I walk up and down my corridor about 40 feet long, holding on with one hand, back and forth 3 to 4 times. There are days, after I am done exercising, I wash and blow-dry my hair. Whenever I decided to go to bed I am not tired and not wound up either. I just lay my head on pillow and go to sleep. After sleeping six to seven hours I am well rested and ready to face another day. That is a first for me. No need for naps anymore. I asked my doctor, Horstmyer, why that sense of wellness at night and he said because I am a night person. I am hoping that one day my time clock will change. I think it will with more infusions. I guess exercising late at night is better than not at all. Last week instead of walking the corridor I felt compelled to tackle the stairs. I called my husband and I told him to spot me as I slowly went up a flight of stairs. Then I took it upon myself to do another flight, we were in shock. I saw an area of my house I had missed for almost 8 months, it was a great feeling.

Dr. Steingo once told me, before Tysabri was approved, that he would ask me 6 months down the road, how I was doing on the drug. If my answer was “I’m doing the same”, that would mean the drug was working. The reason being the disease is not progressing. This drug doesn’t necessarily make you better, although it is making me better.

I heard on a teleconference where the caller asked why was Tysabri only 67% effective on halting the progression of the disease. The neurologist replied that if it was 100%, it would be the cure.

When I went into the office, for the infusions, they put me in a room with reclining chairs, a pillow and a blanket. During the first infusion, I fell asleep. They inserted a needle in the vein of my forearm with a drip for an hour and observed me for another hour. While getting the last three infusions I’ve had more energy, therefore I use the cell phone, read, chat with someone, or get paperwork done, while the infusion is going on. Another person gets infused in another room at the same time. Rumors have it that one day they might have a TV to watch.

I firmly believe that this drug can stop the cells from doing damage then the body can heal itself. So, on that note I say “until something more effective comes around it is TYSABRI for me every 28 days.”

February 03, 2007

I received my sixth infusion yesterday and I feel strong and full of energy.

Marcy

Infused four times since Tysabri was re-approved in June 2006.

December 18, 2006

I have had two Tysabri infusions since the drug was re-approved in June 2006, and my third infusion is scheduled for this week.  Although it took a few weeks until I began seeing some actual benefits, I am now seeing real improvement in my legs - more strength, fewer cramps, and far more endurance.  The improvement hasn't reached my arms yet, but the decline in strength and increase in cramping I had been experiencing before starting Tysabri appears to have ceased. 

December 26, 2006

I had infusion 3 the week before Christmas.  The improvements are now tremendous.  I had been deteriorating for more than a year, and at this point I am almost back to the best I have been since getting MS 7 years ago so far as my legs (mobility, strength, endurance, ).  My arms are also gaining strength, and cramping is massively better.

There is no question that the Tysabri is working at least as well as the Novantrone, which has previously been the only thing which has helped me.

I am having a very curious side effect and would like to know if anyone else has noticed the same thing - raised moles that I have had my whole life are disappearing entirely (3 so far) and others have become flat appear to be on the way to disappearing (4 more).  Raised scars have become completely flat and discolorations are also disappearing - these are also scars I have had for 30-40 years.

January 25, 2007

January 25 - Have had infusion number 4 and improvements are continuing.  VERY happy with the Tysabri.  Arms and hands are not back to Novantrone levels yet, but are still improving.

Side effects report - I got a bad cut on the finger - a chisel into it very deep - the week before Xmas.  Two weeks later the 6 stitches came out.  2 days later you could not tell that there had ever been an injury - both my neuro and dermatologist were shocked. These were emergency room stitches, not plastic surgery style stitches - there should have been a prominent permanent scar.

The scar on my knee I mentioned last time has always had a "weird" thing - when you touched on side you felt it on the other. Now that the raised scar tissue has vanished, the sensations are normal for the first time in 40 years.  Apparently the scar tissue was over a nerve and affecting sensation.

Also dermatologist noticed that in addition to the scars and moles, keratosis on the back of my arms is clearing up for the first time in my life.

Martha

Infused four times since Tysabri was re-approved in June 2006.  

December 1, 2006

I have had 2 Tysabri infusions since the drug has been re-released. My third infusion is scheduled for December 6, 06. Both infusions went very well and I did not suffer any negative side effects. My energy has increased since the Tysabri and I continue to practice water aerobics, Yoga and walking on a daily basis. I was not able to practice all 3 forms of exercise at the same time before Tysabri. My yoga instructor and physical therapist both have stated that my walking and balance have improved since the Tysabri. I agree with both of my health care providers.

I am so grateful for the Tysabri, I am controlling the MS, it is not controlling me!

January 20, 2007

I am doing well and no new symptoms or relapses. I have been speaking at various MS events to help spread the word about Tysabri.

Undisclosed

Infused six times since Tysabri was re-approved in June 2006.

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.

January 12, 2007

I just received my 6th dose of Tysabri. I am still doing well, and have been stable since my last report.

Mike - Phoenix

Infused six times since Tysabri was re-approved in June 2006.

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.

January 15, 2007

If I have had to sum up the progress of my first 4 months of TOUCH therapy after having my 5th infusion, I feel really more comfortable and much better than before my experience with Tysabri in 2005.

I have not suffered any further spasticity relapse, nagging chronic fatigue, or visual disturbances in my better eye. My overall endurance and stamina have improved immensely as I am taking less daily naps while sleeping much better each night. My attentiveness and cognition have also improved.  When I get up in the mornings I’m more focused on what I will try to accomplish rather than simply put off for the next day. I am more motivated and active each day. I haven’t had any burning pains or inflammation in my arthritic joints.

When another MS patient inquires about my experience with Tysabri and any hopes or fear, I share with them a much brighter outlook into the future.  I always try to emphasize I no longer have that constant fear of my MS getting worse. Understanding that this drug safely and effectively mitigates any further progression of active MS, makes any small unknown risk well worth engaging in order to achieve a more productive quality of life.  

I feel the TOUCH program has remarkably improved the overall professional level of medical care, safety, and attention entitled to an MS patient on therapy. I have accepted that this therapy may not repair all of my previous MS damage. I am truly grateful for the convenience of this monthly therapy and its amazing benefits. My old fear of further progression is easily forgotten as long as I am able to continue Tysabri.

February 15, 2007

Completed 6-month TOUCH prescription on February 14, 2007.

During my visit with my neurologist, I emphasized all the positive differences that Tysabri has improved my previous MS condition as well as my current quality of life. The only negative I mentioned to my doc was my rehabilitation seems to have encountered a little difficulty. I am having a hard time deciding what to do with all this extra time I am not wasting on sleeping and napping during the day. My wife wants me to keep fixing up our home and I have several projects going on all at once. I even mentioned to him that after I have successfully recuperated and rehabilitated, I am reentering the workforce from the retired/disabled list.

My neurologist also tried convincing me into taking a drug holiday or a break from infusing Tysabri to reduce my risk going forward. I asked him, what risk? He again mentioned and explained the 3-letter P word. Ok so now he has reiterated and fully informed me about any possible small risks I am taking while complying with the TOUCH guidelines. I countered his unusual holiday suggestion by asking him is it safer practice for a clinical MS patient to start/stop/restart therapy. I suggested to him that I thought there is an increased risk for possibly developing hypersensitivity or neutralizing antibodies to the therapy. He read the Tysabri PI and then concurred with the possible issues of halting therapy.. I also inquired about what possible assurance or guarantee could he give me that I would not begin suffering new MS exacerbation or old relapse after the therapeutic effects of the drug wear off. I told him that it just did not make sense to quit infusing a very effective therapy that had significantly halted my progression and possibly reversed some of the inflammatory damage that had been occurring. I then asked him how any drug could be effective for patients that discontinue therapy. Why would I need a drug holiday to satisfy his medical curiosity by risking an increased chance of an MS flare up or relapse just to test how long the therapeutic effects of Tysabri may have halted my progression? He could not validate or justify his own medical concerns to stop prescribing this wonderful therapy and willfully granted me the next six TOUCH infusions. This morning I followed up my active TOUCH prescription by calling the infusion clinic and made sure all paperwork was signed off to confirm my seventh TOUCH or ninth Tysabri infusion for next month.

Cyndee - California

Infused three times since Tysabri was re-approved in June 2006.

February 27, 2007

Last infusion February 14, 2007.Prior to my Tysabri infusions I had face and ankle burning, drop foot, arthritis in feet and hands, dizziness, balance, fatigue, cognitive, vision and speech problems.

After my infusions my arthritis is almost gone!! I can actually walk and use my hands. For a limited time after infusion I have good cognitive and speech improvements. Face burning is gone, ankles feel great. Vision is better. Fatigue is great for the first few days after infusion.