Many who are not using Tysabri, might benefit from these responses
What did you want Tysabri to do for you?
What changes have you noticed since beginning Tysabri?
How long did it take for these changes to be noticeable?
For How Long have you been using Tysabri?
.
If anybody was on Tysabri and had to stop, tell us why?
Please reply to these questions in the form of commenting to this blog Posting.
Remember that this is an un-official survey.
Scroll down to leave a comment - thank you
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57 comments:
After the re-approval of Tysabri® (Natalizumab), there was the expected/feared PML disorders. I have a table generated with the main available data. The list will be currently updated:
http://chefarztfrau.de/?page_id=716
I was treated with Tysabri for 6 months. I stopped for 2 reasons: -1-I had virtually no immune system while on Tysabri. I got sick (cold/flu) twice, and one of those illnesses led to pneumonia; and, -2- there were several new lesions on my MRI taken after 6 months on Tysabri.
My neuro concluded that Tysabri wasn't working and he stopped treatments (and changed my dx from RRMS to SPMS). We had already considered that I may have been SPMS before I started Tysabri, so my experience ended up serving as a diagnostic tool, if anything.
I've heard of the good Tysabri does for many with RRMS ... I wish it would've worked for me! Also, I didn't experience any bad side-effects from the infusions (besides a supressed immune sys) ... I was expecting flu-like symptoms, but I had no post-infusion reactions at all.
Good luck to all! Hope this works for you!
I started Tysabri about 3 months ago because Copaxone and Rebif were not doing their job. Not gonna lie was and still am Freaked out about they're major side effects, but so far so good. I am hoping Tysabri slows down dramatically my relapses and progression from RRMS now to SPMS later on or worse. All of my symptoms still remain like FATIGUE, dizziness, balence, and right handed TREMORS. It would be great if my symptoms went back to normal, but I'll take not getting any worse as somthing just as good. I haven't gone for an M.R.I. yet so we'll see. I'm hopefull though.
1. I wanted Tysabri to basically stop the MS progression in its tracks. I knew that it slows down the progression the best out of all the drugs---double the efficacy.
2. I have no more fatigue (unless I overdo it). My cognitive issues are gone. My symptoms have gotten better. It helped put me in remission.
3. I noticed these changes after the third infusion.... Read More
4. I have had 9 infusions of Tysabri.
I was under going treatment with Tysabri last year. I was on Rebif and my progression kept getting worse, so I went on Tysabri. The first treatment went well, second dose broke out in hives, took benedryl. Third dose pre-medicated with benedryl with success. The fourth dose, I left my Neurologists office and got about 30 minutes away, and I started to break out in hives, chest started to race and I couldn't talk. I suffered chest pains and my wife rushed me back to the office. I took benedryl and had a dose of solumedrol intravenous applied. This was definitely an allergic reaction, so I was taken off Tysabri. I had a wash out period and started copaxone. I then suddenly started having major cognative problems, bladder issues, and worsening of symptoms. I was seen by my Neurologist and sent immediately for a MRI. My MRI showed a very large new lesion through the right side of my brain which was unlike MS. They feared PML and I was hospitalized. I went through massive doses of antibiotics and antivirals. I underwent repeated tests for the JC Virus. My symptoms worsen and they decided to do plasmapheresis. After undergoing plasmapheresis I started to improve. The Tests came back negative for JC. I was released and saw PML expert Dr. Joseph Berger. He did not think it was PML. Well after a few days I a woke on a Sunday morning unable to speak or swallow. I was rushed back in the hospital, into ICU for a few days until I was stable to move to a room. I underwent more retesting for the JC Virus. All my symptoms seemed to say PML. I slowely started to recover and was on a puree diet for quite awhile. It tooks month before I fully recovered.
What did you want Tysabri to do for you?
I wanted Tysabri to stop the progression of my disease. When I was first diagnosed with RRMS in May of ’06, I had approximately 10 lesions on my brain. Within a year that number grew to more than 60 lesions. The other disease-modifying drugs either didn’t work (Copaxone), or caused seizures (Avonex).
What changes have you noticed since beginning Tysabri?
Good: progression of the disease stopped; eye sight improved
Bad: I was sick for approximately five days each month following the infusion; more prone to upper respiratory infections, laryngitis, sore throats and pneumonia
How long did it take for these changes to be noticeable?
I didn’t know the disease progression had stopped until I had an MRI. This was done three months after I started Tysabri. MRIs conducted after that showed no new lesions either.
The eye sight improved gradually over the duration of the treatment, so I can’t pinpoint exactly when that happened.
I will say the sore throat, aching body, fatigue and cognitive fog started the following day after receiving the medication and lasted about five days. This trend was consistent each month.
Upper respiratory infections were common at least two-three times a year. I didn’t know I had pneumonia until I went to the ER for a fall (I lacerated my chin) in ‘08. They did an X-ray and found a small pleural effusion. I wasn’t diagnosed with pneumonia, per se, but I’m a nurse so I knew what that meant.
For how long have you been using Tysabri?
20 months
If anybody was on Tysabri and had to stop, tell us why?
I stopped in May of this year because my immune system was so weak. I couldn’t fight off another upper respiratory infection and laryngitis. My neurologist and I agreed it was time to take a drug holiday and see what happens.
Hi Stuart,
Thank you for your follow-up "Unofficial Survey for Tysabri Users"..., this should help others tremendously if they are undecided about Tysabri therapy and/or others currently on Tysabri therapy can compare their experiences as shared on your blog by others. I have posted your survey (Link) on my blog so that others may view your survey,and comment if they choose. In answer to your questions:
What did you want Tysabri to do for you?
I was hoping that Tysabri would stop my relapses (or at least slow them down) and slow my disease progression.
What changes have you noticed since beginning Tysabri?
I have noticed that I have hope once again in my life, and I no longer fear waking up each day with the thought of "what has MS taken from me today?". My quality of life has greatly improved and I have a renewed positive view when looking at my future.
How long did it take for these changes to be noticeable?
When I was first on Tysabri therapy (before it was removed from the market for 18 months), within two weeks of my first infusion back in 2/05, I noticed that my right drop but was gone, my limp was gone, my optic neuritis in my right eye had completely cleared up, my slurred speech was gone, and my balance issues were just starting to clear up. I put away my walker and just used my cane for better balance.
Unfortunately, I suffered a severe relapse during the time that Tysabri was not on the market. I am now confined to a wheelchair, but since restarting Tysabri in 10/06, I have not had one single relapse nor any new lesions showing on my recent MRIs. My MS is now stable, woo hoo!
For How Long have you been using Tysabri?
I have been on Tysabri therapy for almost 3 years.
I hope this information is of some help to others, take care now...,
Lauren :)
What did you want Tysabri to do for you?
Stop the progression of my disease.
to be able to take a drug that I was not allergic to.
To be helpful without the awful side effects I felt on the C&R.
What changes have you noticed since beginning Tysabri? No new lesions. Return of energy, much less pain in my legs and feet. I no longer feel like my legs are vibrating. I no longer have numbness in my legs and toes.
How long did it take for these changes to be noticeable? The vibration in my legs went away 3 days after my first infusion.
For How Long have you been using Tysabri? Since January 2009
What did you want Tysabri to do for you?
Stop the progression of my disease.
to be able to take a drug that I was not allergic to.
To be helpful without the awful side effects I felt on the C&R.
What changes have you noticed since beginning Tysabri? No new lesions. Return of energy, much less pain in my legs and feet. I no longer feel like my legs are vibrating. I no longer have numbness in my legs and toes.
How long did it take for these changes to be noticeable? The vibration in my legs went away 3 days after my first infusion.
For How Long have you been using Tysabri? Since January 2009
I just want Tysabri to stop my MS getting any worse, I don't expect anything more and if I get more that's a bonus.
I have noticed no changes thus far.
N/A
I have my 2nd infusion a week Friday
What did you want Tysabri to do for you?
In an ideal world, I want it to give me my old life back. The one in which I used to walk until my feet ached, but could still keep going! But realistically, I want to be able to shop at the supermarkey without having to sit in my car for half an hour afterwards! And more importantly halt the MS progression in its tracks.
What changes have you noticed since beginning Tysabri?
Nothing much at first, but I did notice even after the first dose, that I was more alert than I had been (that's not difficult!)
How long did it take for these changes to be noticeable?
For a definite and sustainable improvement, it took about 3 doses.
For How Long have you been using Tysabri?
I have just had my 7th dose.
im on infusion number 16
i didnt know what to expect cause i was put on it immediately on diagnosis because i have a very aggressive form. i want it to slow it down/stop it in its tracks
i have had virtually no sideaffects or new symptoms since going on it
I've been on Tysabri for three years (chances of PML go way up after two, but my LP was negative). I first started it because I needed a DMA of some kind; my body did not tolerate Rebif at all, not even a little. When I switched I was thinking, "It's Tysabri or nothing." I started on Copaxone in 2000, had a serious relapse, and now I'm into a progressive stage of the disease. Then Rebif, then Tysabri. Tysabri saved my life. When I first started it gave me more of a boost than an infusion of steroids; now the boost is only slight, but there's still a boost each month. I hobble into the infusion center, and on the way out I can almost jog (almost). My old doctor saw healing and improvement, verifiable, not just a halting of the disease process. Never had a single side effect of any kind. Tysabri kicks butt.
My Dr. was about to have me start Tysabri just as it was recalled. I was disappointed cause he said he thought it would've been perfect for me.
I was dx w/ RRMS in 1996, I was 20 yrs old. Now I'm 35 and have SPMS. I tried Avonex, very BAD reaction. I tried monthly IV methylprednisolone treatments till it started messing with my psyche. Tried beta-seron. Body cannot tolerate interferons. Also received cytoxan, which helped.
Now I receive Tysabri which I think has helped me. Shortly after I receive it (8 to 12 hours) my boyfriend, who lives with me, notices a difference in me. I notice it as well. I have more energy and I'm more focused, personable, and it definetly improves my cognitive abilities.
I haven't had any side effects or problems and I've received 11 or 12 doses so far.
Unfortunately though, I can feel that I need another dose about a week before. I start to 'fade'. Other people notice too.
I didn't know what to expect and I didn't have any expectations before I stated it except that I just hoped it made me feel better and it does. Temporarily, which is much better than not at all!!
I'm glad I started it even though yes of course I was scared. I believe true 'courage' means doing it even though it scares you!
Forgot to mention, I was on copaxone also. Took it about 2 to 3years than mr Dr. and myself didn't feel it was dong anything anymore so I stopped and gave my body a 3 year break before Tysabr.
I've tried all the Beta-interferon drugs & my neurologist surmised they are completely ineffective for me.
I went on Tysabri tentatively, the thought of PML scares the crumbs out of me. I had trouble setting up an infusion when I moved to a new state; it was around the same time new cases of PML were reported & that scared me enough to stop it. The "help line" was useless, simply a representative protecting the company by reading answers off the card in front of her & only those questions. I was put on Copaxone after that, which I reacted to badly.
I was hospitalized after 2 high dose steroid infusions did nothing to affect my last exacerbation. I underwent plasma foresis (I forgot how to spell it, sorry) which included a painful jugular catheter, horrendous headaches & a wretched hospital stay in our new state where I knew no one but my husband.
Since recovering from that, it was decided to "wash out" for 2 months & go back on Tysabri. I'm back on it, & still have some annoying symptoms (feeling heat that isn't there, fatigue, numbness that comes & goes, tremors, neck & shoulder pain)but no real exacerbations since then.
I hope you are all doing well now or on your way to getting control of your symptoms. Remember, you have MS, it does not have you!
I go in for my 8th infusion tomorrow! Can hardly wait. I was diagnosed 2 years ago with MS. I have over 20 lesions on my brain and over 20 on my spine/thorax. I worked in the same job for 23 years and had to take an early medical retirement about 2 years ago at the age of 42. I had a very responsible job and couldn't do it anymore. I had been going to the doctor for years withy different things that now I look back were actually symptoms of MS. Stuff like major back problems, severe depression, etc. I was told that it was panic attacks so they would change my meds. I hurt my leg a couple of years ago and had to go to physical therapy. I was told that my legs were very weak. I was flabergasted because I walked at least 5 miles each day. My family doctor ordered an MRI of my brain. He called me that night and told me that I have MS. I didn't know what it was so I said "OK - Thanks". Then I told my husband. After that, I went through the normal array of tests and was told by my neurologist that it is quite bad and I've probably had it for 15-20 years. I honestly just thought that I was just clumsey or had too much to drihk. Come to find out, they were all symptoms of MS. I've egone through the gambit of medications and nothing was working. I've been on Copaxone, Rebib and nothing was helping. I was so frustratede and tired of hurting and having so many physical and mental limitations - especially since I was such an independant person. I'm very stubborn and I'm not going to let this get me. I hated walking around with a walker at such a young age and a wheelchair if it was a long trip.
My doctor explained the risks of Tysabri and told me that it's the only option left. After 2 doses I started to feel the fog lifting from my hy head and my mind started clearing. After 3 infusions, I no longer use my walker. It's like one of those TV shows where people are healed and stand up from the wheel chair. I very rarely have to use my walker. Since I've had MS for so long before it was diagnosed, I still have relapses and lots of pain, but we're working on that too.
Right now, my symptoms are: depression, pain (sharp, dull, hot, poking, etc, from the top of my head to the tip of my toes. My hands, fingers, arms, legs and feet all go numb, fatiguedm and all the other stuff. The Tysabri seems to take so many of my symptoms away and I can't really remember what the old symptoms were., I would be moire than happy to provide you with as much information you need or want! Thanks a bunch - Wendy
I know that I should know, but sometimes it doesn't bypass a lesion. I've taken my 7th dose of Tysabri and it has brought me from a walker to being about to walk around the mall which is approximately a mile with no help! It really is amazing. I haven't fallen down the stairs, no severe muscle spasms that look like grand mals. Tysabri is actually my best friend now and I look forward to it each month because each month gets me better. I have a tough time realizing I have limitations, but this too will come in time but each day I also challenge my limitations and go a bit farther.
My next journey.....Well, I've come from the high level job where I worked my butt off to get. Got it. Worked there for 23 years and proved to myself I could do it.
Next....My goal in life is to really help people and try to teach people what I know-even though now it will be on a much easier to understand scale. My journey is MS. I feel like it is now time for me to share my heart and soul and ability to help people feel comfortable and strong enough to go on. That's my journey and I honestly feel like the Lord has put me in this position. Granted, it sucks at times - quite a bit, but I'm strong enough to get through!
I didn't want my post to be anonomys, but I couldn't figure out how to do it. My name is Wendy Collins.
I go in for my 8th infusion tomorrow! Can hardly wait. I was diagnosed 2 years ago with MS. I have over 20 lesions on my brain and over 20 on my spine/thorax. I worked in the same job for 23 years and had to take an early medical retirement about 2 years ago at the age of 42. I had a very responsible job and couldn't do it anymore. I had been going to the doctor for years withy different things that now I look back were actually symptoms of MS. Stuff like major back problems, severe depression, etc. I was told that it was panic attacks so they would change my meds. I hurt my leg a couple of years ago and had to go to physical therapy. I was told that my legs were very weak. I was flabergasted because I walked at least 5 miles each day. My family doctor ordered an MRI of my brain. He called me that night and told me that I have MS. I didn't know what it was so I said "OK - Thanks". Then I told my husband. After that, I went through the normal array of tests and was told by my neurologist that it is quite bad and I've probably had it for 15-20 years. I honestly just thought that I was just clumsey or had too much to drihk. Come to find out, they were all symptoms of MS. I've egone through the gambit of medications and nothing was working. I've been on Copaxone, Rebib and nothing was helping. I was so frustratede and tired of hurting and having so many physical and mental limitations - especially since I was such an independant person. I'm very stubborn and I'm not going to let this get me. I hated walking around with a walker at such a young age and a wheelchair if it was a long trip.
My doctor explained the risks of Tysabri and told me that it's the only option left. After 2 doses I started to feel the fog lifting from my hy head and my mind started clearing. After 3 infusions, I no longer use my walker. It's like one of those TV shows where people are healed and stand up from the wheel chair. I very rarely have to use my walker. Since I've had MS for so long before it was diagnosed, I still have relapses and lots of pain, but we're working on that too.
Right now, my symptoms are: depression, pain (sharp, dull, hot, poking, etc, from the top of my head to the tip of my toes. My hands, fingers, arms, legs and feet all go numb, fatiguedm and all the other stuff. The Tysabri seems to take so many of my symptoms away and I can't really remember what the old symptoms were., I would be moire than happy to provide you with as much information you need or want! Thanks a bunch - Wendy
I know that I should know, but sometimes it doesn't bypass a lesion. I've taken my 7th dose of Tysabri and it has brought me from a walker to being about to walk around the mall which is approximately a mile with no help! It really is amazing. I haven't fallen down the stairs, no severe muscle spasms that look like grand mals. Tysabri is actually my best friend now and I look forward to it each month because each month gets me better. I have a tough time realizing I have limitations, but this too will come in time but each day I also challenge my limitations and go a bit farther.
My next journey.....Well, I've come from the high level job where I worked my butt off to get. Got it. Worked there for 23 years and proved to myself I could do it.
Next....My goal in life is to really help people and try to teach people what I know-even though now it will be on a much easier to understand scale. My journey is MS. I feel like it is now time for me to share my heart and soul and ability to help people feel comfortable and strong enough to go on. That's my journey and I honestly feel like the Lord has put me in this position. Granted, it sucks at times - quite a bit, but I'm strong enough to get through!
I have been using Tysabri for 15 months. Before that I had been on Betaseron for three years. I was really afraid of the Tysabri when my neurologist first suggested it (PML),but I was getting worse and knew I needed to try something. I was falling and was having a lot of trouble with my eyesight. My hope when starting the Tysabri was that my symptoms wouldn't progress any further and maybe just maybe there would be some improvement in my symptoms. For the first 6 months I didn't notice much. My eyesight problems had settled down and my energy level was pretty good most of the time. After the 6 month mark I have noticed a big difference. I have started working out on an eliptical machine,and stretching 3 times a week. My strength and endurance and balance has improved greatly. I feel great. I know I still have MS this isn't a cure but I think it's a miracle drug that has improved my life so much.
What did you want Tysabri to do for you?
I wanted Tysabri to slow (or halt) the progression of my MS.
What changes have you noticed since beginning Tysabri?
Not much (but, I no longer have the side effects that I had from Avonex, Copaxone & Rebif). My hand/finger coordination improved a little bit in the first three months after I started Tysabri, but that could be the usual "course" of an exacerbation (i.e., I would have seen improvement by then, anyway).
How long did it take for these changes to be noticeable?
There has really not been much improvement in my functioning that I've noticed over the course of my 27 Tysabri treatments -- just worsening.
For How Long have you been using Tysabri?
I have been using Tysabri for just over 2 years (& will receive my 27th infusion in a week).
I started Tysabri after 2 years of using Copaxone (preceded by 2 years of Avonex). They just weren't working for me anymore. I just had my 25th dose of Tysabri. It seems to be really working for me.
My first MRI after starting tx showed improvement. My last 2 were stable. The actual infusion is very tolerable. Early on in the tx (after the 3rd dose), I ended up with pneumonia due to my weakened immune system on Tysabri. However, I had more exposure to pathogens than most people, since I worked in a general pediatrics office. I eventually left that job b/c I was constantly getting sick and was afraid to end up with pneumonia again (or worse). I also had one relapse after the 5th tx, but it was milder than the relapses that I've had on the other txs. Since then, no more relapses!
I wish there was an easier way to administer Tysbari, though. I'm lucky that with my new job, I have the time to sit around for 3 hours (the extra hour just from wait time at the dr's office) every month. It's hard for most people to have that time off each month. It would be nice if there were more centers available for tx (and with weekend hours).
Good luck everybody! :)
I have been on Tysabri for 2yrs 4mo. My doc put me on tysabri, after being on copaxin and Rebif. I could not tell a difference with the shots, but with Tysabri, my legs started feeling stronger, my 24 hr.fatiuge went away. I was in a wheelchair within a year of being diagnosed. Now I can use my walker for short distances. I don't need to nap everyday. So far, it's been my answere to stop MS from getting worse. I've had no flu like symptoms, after infusion. But I can tell when it's time for my next infusion, I feel tired again, and my feet trip up more easily.
pennyneuf@sbcglobal.net
I have been on Tysabri for over 2 yr
After trying Avonex and Copaxine, without telling a difference either way. My doc and I decided to try Tysabri. I was in a wheelchair within a year of my diagnoses. After starting infusions, I noticed I wasn't tired ALL the time. My feet and I can now use a walker for short distances. I feel better all the way around. I can tell when it's time for Tysabri again, I get sluggish, my feet won't work. I've never had a bad reaction. No flu like symptoms. Tysabri works for me!
imapenny2@live.com
imapenny2@live.com
Tysabri seemed to be what I needed to keep MS at bay. I've used tysabri for over 2 yrs. Avonex nor Copaxine did anything. help nor hurt. I was in a wheelchair within a year of being diagnosed. With Tysabri I can use my walker, short distances, and am not taking daily naps. I feel more energetic. But, I can tell when it's time for my next infusion. legs get wobbly, I get tired
Sorry...this is a first for me..didn't realize comments were already posted....OOOOPS
What did you want Tysabri to do for you?
I wanted Tysabri to slow (dare I saw "stop") the progression of my 19-yr-old daughter's MS. She was diagnosed at age 15 and Betaseron, Copaxone, steroids didn't work.
What changes have you noticed since beginning Tysabri?
How long did it take for these changes to be noticeable?
There was a dramatic improvement in mobility after the first infusion. Also more energy. Other symptoms seem unfortunately unchanged... hand tremor, right arm fatigue, "buzzing" in legs when she walks a lot. Cognitive function seems a bit worse but I'm hoping to still see some improvement there.
For How Long have you been using Tysabri?
Going for 7th infusion next week.
Some background on me and MS therapy: I was diagnosed with MS in 2003. My first therapy was Copaxone and later Rebif. Copaxone didn't seem to work for me as my MS progressed. While on Rebif I had liver problems that resolved after I stopped the injections. I started Tysabri in April 2008 and have had 19 infusions.
What did you want Tysabri to do for you?
I wanted Tysabri to slow down the progession of my MS. It has most certainly done that.
What changes have you noticed since beginning Tysabri?
I have much more energy, less spasticity and improved cognitive abilities. My MRI at a year showed improvement as well - no new lesions and the lesions I had are now smaller.
How long did it take for these changes to be noticeable?
I began to notice changes by the 4th or 5th month.
For How Long have you been using Tysabri?
19 infusions
If anybody was on Tysabri and had to stop, tell us why?
I hope I never have to stop Tysabri.
You didn't ask about side effects we've experienced but I think it's a good idea to list them as well. I sometimes have a headache that lingers for a few days. I find that if I take 2 Advil 3 times per day on the day of the infusion, I don't have a headache. Also I've experienced nausea at times but medication can be prescribed by your neurologist to counteract it. Other than this, I've had absolutely no problems during or after the infusions.
What did you want Tysabri to do for you?
I wanted to stop my relapses and possible progression of m.s.
What changes have you noticed since beginning Tysabri?
No severe exacerbations just a mild "relapse" if I over do it. If that happens I need to spend 4-5 days in bed resting. I'm out of a wheelchair and walking. I still have m.s. but my quality of life has improved :) I take pre-meds prior to every infusion.....tylenol and benadryl. But, I have not needed solumedrol since I began using Tysabri :)
How long did it take for the changes to be noticeable?
After my first infusion I found I could use a walker for short periods of time instead of the wheelchair. I've gotten stronger with each infusion and I'm now exercising 3-5 times a week depending on how I feel. I'm able to walk on my own although I'm still a bit clumsy and I do fall every now and then. But, I'm much better than I was before I began the infusions. I've always been a bit clumsy :(
How long have you been using Tysabri?
I had my first infusion July 2007. Since then I have missed 3 infusions due to colds, etc. I was told in 1980 by my neuro that I probably had m.s. but I didn't have enough lesions to prove it and my LP was negative. I finally received a dx in 2002 after a very severe exacerbation. Another severe exacerbation in 2003 put me in the wheelchair. Now that we definitely know that I have m.s. we can trace my "symptoms" back approx 42 years to when I was in college.
After the infusions I experience side effects for a few days: nausea, stomach ache, headache, flu like symptoms. I still deal with m.s. on a daily basis but my quality of life has improved so much it's almost a miracle. I still have fatigue, pain, occasional numbness and tingling in my hands and feet, cognitive problems, vision problems when I over do it, and the occasional "electric shock" feeling in my legs.
I do worry about PML. But, I know that if I miss several infusions due to having a cold, shingles or a sinus infection I begin to lose my sense of balance and my arms and legs become much weaker. I have a long history of recurring shingles and sinus infections. Since being on Tysabri I have only had two shingles episodes which is fantastic for me....LOL And, my sinus infections....which are now rare..... only last 4-6 weeks instead of 8-9 months. I know I will never go back to being the way I was years ago when I would bounce back from a relapse and live a "normal" and very full and active life.
I was on Tysabri for 2 or 3 months beginning right after they released it the second time. I had no positive or negative reaction.
I quit when I dicovered that people taking it had greater risk of melamona skin cancer. My family has a history of it, so I decided not to take the risk.
Except for the time Tysabri was pulled from the market, I've been on Tysabri since April 2002. I was a Phase III study patient and was getting the drug. I consider it a wonder drug; I have had no side effects; I have had no relapses; I have not gotten ill; my cognition and fatigue are markedly improved; I will remain on it until an oral drug with the same efficacy becomes available.
I'm writing this note directly to you concerning your personal discernment of Tysabri therapy. As a 55 year old guy, I received my 30th infusion of Tysabri last Tuesday. With the hum of the press breathing down the necks of the neuro community, my doc ordered a Tysabri Antibody test and a LP for PML. With negative results, she did not hesitate at ordering my infusion.
Don't hesitate, I wish that I started Tysabri years earlier! If my two kids ever test positive for MS, I'll pound the table for Tysabri therapy for both of them.
Feel free to publish this note in your NEWS & VIEWS with my name.
Best,
Joe Jendusa
From Stuart:
I would like to thank Each and every person who has left a comment to this posting. Seen in these comments are Pros and Cons -- which is fantastic and very democratic.
However, we need more. Everything in GREAT numbers, is better observed than what appears in smaller numbers.
Please contact your pharmaceutical reps , doctor offices, infusion centers, support group leader and others, urging them to ask every person they know, using Tysabri, to comment on this posting.
If you are using Facebook, please visit all the Tysabri pages and urge others to do this.
The link for this Blog Posting is here: http://wwwmsviewsandrelatednews.blogspot.com/2009/09/unofficial-survey-for-tysabri-users.html...
THANK YOU for helping to help others with their decision on the use of this medication.
If you have anything you ever want to tell me or ask me, please write to: stuart@msviewsandnews.org
Best Regards and thanks again
Stuart
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louisefoster@mac.com
I just started Tysbri on August 12th, my 63rd birthday. I have had 2 treatments. They say that after the 3rd treatment you should be able to tell if the drug will work for you...I'm hoping to have SOLID results by Thanksgiving. Already I feel stronger and I hope that it is not just placebo, but am willing to take any improvements regardless of what the reason. PML is a real concern, everytime my head hurts I wonder if "this is the end", but so far I have had no real problems. Infusions take a long time but really do not have any bad effects on me.
I was diagnosed with MS in 1995, although my symptoms started a while before that. I started taking Betaseron (the only drug approved at that time), and remained on it for 6 years, until I had liver trouble.
I then switched to Copaxone, which I took for a little over 3 years. I developed lipoatrophy, which is deadening of the tissue where injections are given.
I took LDN for the next 3 years; we moved from Florida to South Carolina, and my new neuro wanted an MRI - which showed 3 new lesions.
I went on Tysabri then, and July would have been my 24th infusion. Somehow,
I managed to get myself paranoid about PML-so I stopped after the June infusion.
Biggest mistake I ever made. I have, unfortunately, lost quite a bit of ground - my eyes, my balance...I'm praying that a few more doses will get me as close to where I was as possible.
My neuro was great-did the antibodies test, and MRI'S with contrast every 6 months. It was my own stupidity. I am so sorry...bad decision on my part.
I was part of the original Tysabri study. I was in the placebo initially, Then when the study was finished I went on tysabri for 7 months until it was pulled from the market. When it came back on I went back to it immediately. My goal is to slow down progression and I think it is working. I have been back on for 10 months, and it is the easiest treatment for me. I have had no side affects.
Debbie
What did you want Tysabri to do for you?
Stop any progression.
What changes have you noticed since beginning Tysabri?
I have noticed a bit more energy and the brain fog is lifting. I am stretching and doing yoga,and working out on a stationary bike, which seems to help. I have drop foot and my legs are week. i walk with a cane. I sometimes can feel the strength coming back and this is giving me hope. I was on Copaxone for almost three years. I found I was loosing ground so I have switched to the Tysabri. I am not very concerned of getting PML, I have MS, right:(
My walking is getting better and I am working on my balance through yoga.
How long did it take for these changes to be noticeable? I think the most progress has been with this last infusion. I keep a daily note of the good and bad days and there are more good than bad with each month.
For How Long have you been using Tysabri? I have had my 5th infusion with no problems. I have a couple of slow days right after the infusion, but after that energy!!! Then I can tell when I need more Tysabri about a week before my appointment. I am very happy with my progress and until something better come along I am a Tysabri user.
What did you want Tysabri to do for you? I want Tysabri to stop progression and to have no more relapses!
What changes have you noticed since beginning Tysabri? My quality of life improved. I just overall feel better.
How long did it take for these changes to be noticeable? within the first 3 months
For How Long have you been using Tysabri? waiting until my 31st infusion this week.
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If anybody was on Tysabri and had to stop, tell us why?
Tysabri has truly turned my life around. I was months away from disability and once I began my Tysabri infusions, I actually began to feel my cognitive fog lessen in about the 3rd week. I actually finished my Master's in Nursing in the first 18 months and continued working and began public speaking about MS and living well with this disease. Of course, I was scared when I began the infusions. Tysabri had been reintroduced to the market in July and I began in January BUT I knew that I could not live the way I was "living"................NOW, after 32 infusions, my life is almost normal. I just have to remind myself that I do have a life-altering disease so that I will rest appropriately. If I don't, I will crash and burn.
4 infusions of Tysabri so far and the MD wants me to hold on the next #5 infusion to "make sure I don't have PML" and that it's just my MS. Never wanted to have MS more in my life - strange but true. I felt the best of the month the day after the Tysabri, but have been feeling week, and just 'out of it' Vision, bladder, bowel problems for the first time in years. MRI in 30 minutes and a blood test to see what's going on.
I hope to resume Tysabri and receive benefits many of you mentioned.
Thanks Stuart
I've posted on the icarecafe
I have been on Ty since 06/08 and I feel it has helped me a lot. When I first started the infusions, I needed someone to drive me to the hospital and then secure a wheelchair of me to get to the infusion center.
Since that time, I have gradually left the chair behind and drive myself. This so pleased the independent streak in me to no end!
I just had my own 2 year anniversary with Tysabri. I'm doing infusion #25 next week.
1. I wanted to try Tysabri because I had had no success with any of the other CRAB drugs. I was RRMS with SPMS in the works. I looked at the PML odds, and used my intuition to make the decision. I am concerned that as I get to the three year mark, my odds are getting worse, re PML. If something else as good as Tysabri comes along, I may switch because of that.
2. I've done very, very well on it. I've combined it with the "MS Diet", starting a year ago (there's a good book called "The MS Recovery Diet" that helped me a lot). Between those two things, I am doing as well as I ever have since I was diagnosed. I am MUCH better off than I was 3 or 5 or 10 years ago. It is amazing. I used to use a cane some percentage of the time and now rarely use it. Other things have improved as well. So much of my fatigue is gone. I am exercising again.
Of course, neither of those things are a cure. I still have MS, I am still overly sensitive to heat, can still get triggered by infections, stress, etc. But my quality of life is much better.
Another thing is, since I have been on Tysabri I have had three MRI's. There has been absolutely NO progression in my brain since I've been on it. In fact, my most recent MRI showed 2 fewer lesions than the last one.
3. I had no more progression after my first 9 months on T. I had one major relapse my first year. Since starting the diet and continuing T, I have had no major relapses and no further progression.
I know you asked about Tysabri. Personally, I tend to think that the #1 thing a person can do to help their MS is make serious dietary changes. Besides the book, there is a website with a bunch of information here: http://www.paleodiet.com/ms/.
I have a theory - Tysabri stops your immune system from attaching your myelin on your nerves in the brain. I think anyone diagnosed should try to get on it asap. And, the diet is what calms down your immune system. Your immune system is getting triggered - by infections, gluten, casein, etc. Tysabri doesn't stop that. So the two go hand-in-hand pretty well. I think that once you get your immune system under control, then you could probably let go of the Tysabri. However, I'm not yet sure I'm ready to try it :-) I really don't want to get sick again, and the reports from people who have suddenly withdrawn from it haven't been good.
I talk about my experience with Tysabri and MS, among every thing else, on my blog.
Best of luck to anyone who tries it out.
What did you want Tysabri to do for you?
Like most other people I think I wanted to just have a chance of having a better quality of life. I tried Rebif but became quite sick on it and was still relapsing every 2-3 months. I wanted to halt the progression of my disease and stop the relapses. It really was the only option.
What changes have you noticed since beginning Tysabri?
I have noticed that I have more energy, my balance has improved and have been able to do more exercise than before. I had only one relapse after the very first infusion but since then have had no other relapses since being on Tysabri! Now that is a wonderful thing. I still have neuropathic pain but am contolling that with meds.
On the negative side I do get headaches and nausea after having the infusion. I also notice that about 6 days before the infusion is due I start to feel incredibly tired and shakey. I am hoping this will go away in time.
How long did it take for these changes to be noticeable?
It took about 4 infusions before I really began to notice the improvement.
For How Long have you been using Tysabri?
I have had 8 infusions so far and am due for my 9th in a few days. So far so good.
As of this post, (49) have left their comments of their use of Tysabri. - THANK YOU
Invite others to leave their comments.
Best Regards,
Stuart Schlossman
Sept 27, 2009
I have been on Tysabri for the past 13 months. When I started I was doing quite poorly on the injectable Alferon N-3 that is my doctors version of Interferon. Anyway switched to Tysabri had hoped it would change my situation but to tell you the truth nothing has changed. Maybe that is good because I am not sure if I am worse or maybe staying in the same place. You know we are not really allowed to hope for improvement with this condition. I am always told we just hope that we can slow the progression not make you better. I just had my new MRI and I was looking at it and it looks the same so that is good. Lets see what the doc says. I also use gammaglobulin infusions and also hope that that may help as well. So there is my two cents on this. Will keep you guys posted.
Great comments everyone. Thank you again Stuart for the survey.
I posted previously, but I wanted to add a comment for those of you who are experiencing some side effects such as a headache, nausea, etc.
You should discuss with your neurologist pretreating your infusions with either a 30 minute Benadryl drip, or taking a OTC medications such as Claritin-D two hours before your infusion (this is what I do, and I take a Claritin-D tablet two hours before I even leave my home for my infusion). This should help greatly with any side effects might be experiencing, and also make sure that you drink plenty of fluids the day before, the day of, and the day after your infusion as this will help reduce the possibilities of developing a headache.
Lastly, you should make sure that you eat before or during your infusion. Many just have a sandwich, and many have a breakfast if their infusion starts early in the morning. For me, I take Graham crackers with me to nibble on during my infusion.
And as I said before, you should discuss pretreating your infusions with your neurologist and see if this helps you.
I go for my 39th infusion this Wednesday, and I can hardly wait because I never have any side effects other than feeling a little tired the day of my infusion.
I hope this information helps some of you, and good luck to all!
Lauren :)
I was diagnosed in 2007 with MS when I saw my first Neuro he just gave my husband & I brochures and told us to pick what we wanted to start with so we chose Copaxone because there were really no side effects to it. After being on it for a year my legions were constantly increasing & my neuro having me to MRI's about every other month. I met another lady that lived close by and she refered me to her Neuro. He is great we talked about Tysabri at one of his meetings and heard a speaker from it and looked at the risks of PML but we decided to go for it I had not problems with my First infusion on my 2nd infusion the bottom of my feet & my the palms of my hands started to itch bad. They stopped my infusion gave me another dose of Benadryl when the itching stopped they started the infsion back and no more problems come to find out it was probably because I didn't eat anything that morning before it so now I bring food & snacks to much the whole time & take my injection of the benadryl before my infusion starts. I have been on it for 8 mths now no problem just went for my MRI last week & am looking forward to finding the results on my next apt with my Neuro.
What did you want Tysabri to do for you?
Realistically, slow down or, ideally, stop progression. I've had MS for 12 years when I started Tysabri, I was still RRMS; I used Rebif for 4 years before (until it stopped working) and Copaxone for 2.5 years (too many side effects).
What changes have you noticed since beginning Tysabri?
More energy and ability to cope with stressful situations, I was finally able to do things without long before planning (go out shopping or to the movies because I wanted it then, without having had to plan it the week before). I've been using a walker for 2.5 years when I started Tysabri - still using it, 1.5 years after (didn't go back to using a cane, but didn't progress to wheelchair, either). I've had 1 minor relapse (no steroids needed) after about 1 year of Tysabri.
How long did it take for these changes to be noticeable?
About 2 or 3 months/infusions.
For How Long have you been using Tysabri?
I've had 20 infusions so far (will have my 21st in a couple of days).
G'day. 51 yo male and I've just had 11th Tysabri infusion. Whilst I had no expectation I hoped for some (any) improvement. Main symptoms of depression, cognitive issues, muscle weakness in arms and legs especially right arm and leg, numbness in fingers & palms of both hands, difficulty walking, foot drop, and major fatigue. So far only small improvement in right calf muscle & a return of some feeling in the skin there. Other symptoms appear resistant. First appearance of MS at 15y and have had many what now can be recognised as relapses since. MS appears to be slowly worsening over the last 7 years since diagnosis as RRMS. I had tried Betaseron after initial diagnosis but severe reaction suggested intolerance to interferons. At this stage I cannot conclude Tysabri is effective. Maybe I am at the stage of progression from Relapsing Remitting to Secondary Progressive. MS research papers indicate MRI scans are of limited value in making predictions of MS progression/improvement. I remain hopeful of substantial improvement in major symptoms soon although I don't think I can justify the PML risk for another 12 months.
I just celebrated my one year anniversary on Tysabri (14 infusions)this month. Before starting Tyssabri I was taking Avonex off and on for several years, more off than on because of the side effects. I started Tysabri after a really big relapse after several years of being benign. I started feeling better almost immediately. I had more energy and noticed more muscle control/strength in my left let which was pretty dead. Best of all, I've had absolutely no side effects from the infusions! Tysabri has done exactly what I had hoped, slowed down my MS and made me feel better. I'm not back to my pre-relapse self and probably will never be, but I'm so much better than I was. My fatigue is gone unless I overdo it, which is easy to do since I feel so good.
About me: Female, 51 years old, MS for 30 years--I have tried about everything out there prior to starting Tysabri almost 3 years ago, after it came back on the market.
What did you want Tysabri to do for you? To stop a sudden relapse. I had been stable for almost 10 years after a round of Cladribine, which i thought was the last straw. I was terrified when I relapsed. Tysabri stopped the relapse, but not immediately--took about 5 months
What changes have you noticed since beginning Tysabri?
It stopped a serious relapse, plus I actually have some improvement beyond that. I am stronger and steadier.
How long did it take for these changes to be noticeable? 5 months after I started...plus some additional improvement. I have few to no side effects after my treatments...at most some fatigue.
For How Long have you been using Tysabri? Almost three years.
I rcommmend Tysabri. It has been great for me.. Of course I am concerned about side effects, but next to Solumedrol, Tysabri is a piece of cake. And next to MS???? No comparison.
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