Aa
Tysabri!?!?
Got a question for everyone! So the dude has arrived at his 1 year anniversary of living with MS, if such an anniversary is something to celebrate...anyway. During that time he has been taking Avonex. He had 2 flair ups this past year which is a concern to his neuro. He had his 3rd MRI which showed a new but non-enhancing lesion. He suggested that we switch his medication, because it is clear that Avonex is not working well enough for him. The neuro suggested Tysabri. He is very happy with the results of this med, has 440 patient's on it that are doing great! I have spoken with several of his patient's about their experiences and they all seem to be very happy with it!
I am still a little hesitant to encourage the switch... Is anyone out there taking it? How do you like it? Are there, or what are the side effects your experience? Are we nuts to switch already?
I encourage any input, thoughts, or props from anyone!
~BurbanChick
I am still a little hesitant to encourage the switch... Is anyone out there taking it? How do you like it? Are there, or what are the side effects your experience? Are we nuts to switch already?
I encourage any input, thoughts, or props from anyone!
~BurbanChick
Again, just wanted to thank everyone for all the info on tysabri! Gives us a little more to think about!
Hope everyone had a nice holiday!
~burbanchick
Hope everyone had a nice holiday!
~burbanchick
Hi,
I'm the Lori that Lulu referred to in her post. I have had MS for 13 years and I have tried all the CRAB medications. The Avonex was the hardest for me to take and I used it the longest of all the drugs. I had bad attacks several times every year, and I have some permanent damage from each of those attacks.
My first MRI was in 1995 and it was bad and up until March 2008.
I decided to research Tysabri and it sounded scary, but I was willing to try anything. That is when I asked my Dr. about Tysabri. This is a monthly infusion that last 1 hour. My first infusion made my heartbeat a little fast, but I was nervous. I went straight home after the infusion because I expected to be sick. I wasn't! As the day went on I started to feel like I had more energy, but I was afraid if I got up and started doing things I might end up sick so, I just rested that day. The next day I woke up feeling great...my bladder problems got better over night and I semi-normal again.
My neurologist warned me that as it got closer to the next infusion the problems may start back up and they did just not as severe. She also said that I needed at least 3 infusions in my body so the medication would be at an even level in my blood. The 2nd infusion went well, but it did make me sleepy. The third, fourth, fifth and sixth infusion all went well. I still had some problems just not as bad as before the Tysabri.
After the sixth infusion I had my first post-Tysabri MRI. Now remember, I have had MS since 1995 and have had MRI's every year sometimes twice a year....and each one got worse and worse. My newest MRI showed improvement! The Tysabri was working!! I was in so much shock I couldn't believe it. I posted an update on the forum to let everyone know that It was working, but it still took me another week or so for the information to really sink into my brain.
Tysabri requires a commitment to take the infusions for at least 18 months. I will continue to have MRI's every 6 months and I feel confident they will continue to heal the numerous lesions on my brain & spine. I love not having to take weekly shots, no more bruising/ or site reactions....just one IV every month.
I still have problems with my MS, but they are not new problems. I chose Tysabri because I felt like I had no other alternative since I failed all the other drugs. I made the decision with the attitude of "what do I have to lose". It's not a cure, but for me it has been the best decision I have made for my life.
My advice is research the medication, read the Tysabri diaries online, read the comments on this forum from others....because it affects everyone in different ways. Email Cosmobirdie (Rita). We talk all the time and we both have had different experiences with the drug, but also have had alot of the same experiences. I think it has been easy for me and know she has a harder time with it.
This is a personal choice you have to make for yourself...no one person can tell you what is right for your life. Talk to your doctor and do your home work. Then give yourself time to decide if you are willing to make this commitment. Email me or Cosmobirdie if you have any questions. We can only tell you about our experiences, but it might help clear up some questions you have about the medication.
I hope my personal experience have helped you. Please email me any time you would like to talk. I will be sending you and invitation to be one of my friends. I hope you accept because I would love to know what you decide to do.
Good Luck,
Lori
I'm the Lori that Lulu referred to in her post. I have had MS for 13 years and I have tried all the CRAB medications. The Avonex was the hardest for me to take and I used it the longest of all the drugs. I had bad attacks several times every year, and I have some permanent damage from each of those attacks.
My first MRI was in 1995 and it was bad and up until March 2008.
I decided to research Tysabri and it sounded scary, but I was willing to try anything. That is when I asked my Dr. about Tysabri. This is a monthly infusion that last 1 hour. My first infusion made my heartbeat a little fast, but I was nervous. I went straight home after the infusion because I expected to be sick. I wasn't! As the day went on I started to feel like I had more energy, but I was afraid if I got up and started doing things I might end up sick so, I just rested that day. The next day I woke up feeling great...my bladder problems got better over night and I semi-normal again.
My neurologist warned me that as it got closer to the next infusion the problems may start back up and they did just not as severe. She also said that I needed at least 3 infusions in my body so the medication would be at an even level in my blood. The 2nd infusion went well, but it did make me sleepy. The third, fourth, fifth and sixth infusion all went well. I still had some problems just not as bad as before the Tysabri.
After the sixth infusion I had my first post-Tysabri MRI. Now remember, I have had MS since 1995 and have had MRI's every year sometimes twice a year....and each one got worse and worse. My newest MRI showed improvement! The Tysabri was working!! I was in so much shock I couldn't believe it. I posted an update on the forum to let everyone know that It was working, but it still took me another week or so for the information to really sink into my brain.
Tysabri requires a commitment to take the infusions for at least 18 months. I will continue to have MRI's every 6 months and I feel confident they will continue to heal the numerous lesions on my brain & spine. I love not having to take weekly shots, no more bruising/ or site reactions....just one IV every month.
I still have problems with my MS, but they are not new problems. I chose Tysabri because I felt like I had no other alternative since I failed all the other drugs. I made the decision with the attitude of "what do I have to lose". It's not a cure, but for me it has been the best decision I have made for my life.
My advice is research the medication, read the Tysabri diaries online, read the comments on this forum from others....because it affects everyone in different ways. Email Cosmobirdie (Rita). We talk all the time and we both have had different experiences with the drug, but also have had alot of the same experiences. I think it has been easy for me and know she has a harder time with it.
This is a personal choice you have to make for yourself...no one person can tell you what is right for your life. Talk to your doctor and do your home work. Then give yourself time to decide if you are willing to make this commitment. Email me or Cosmobirdie if you have any questions. We can only tell you about our experiences, but it might help clear up some questions you have about the medication.
I hope my personal experience have helped you. Please email me any time you would like to talk. I will be sending you and invitation to be one of my friends. I hope you accept because I would love to know what you decide to do.
Good Luck,
Lori
Hi,
My friend was on Avonex but she was not going well on it so she changed to Tysabri. She seems to be doing ok but has only had around 3 infusions so far. She prefers Tysabri so far and said it is heaps better than Avonex. I saw my neuro recently and asked about Tysabri and what he thought. He doesnt seem to like it, he said it has had some very negative side effects and is too in its early stages. I have been on Rebif for 6 years and think that works great. Its a small needle you can do yourself with an autoject 3 times a week and has proven to slow the progression of my ms and make any relapses i do have very minor ones. My neuro suggested to me to stay on Rebif.
Good luck, it is a very hard decision to make as we dont really know a huge amount about any of these drugs.
My friend was on Avonex but she was not going well on it so she changed to Tysabri. She seems to be doing ok but has only had around 3 infusions so far. She prefers Tysabri so far and said it is heaps better than Avonex. I saw my neuro recently and asked about Tysabri and what he thought. He doesnt seem to like it, he said it has had some very negative side effects and is too in its early stages. I have been on Rebif for 6 years and think that works great. Its a small needle you can do yourself with an autoject 3 times a week and has proven to slow the progression of my ms and make any relapses i do have very minor ones. My neuro suggested to me to stay on Rebif.
Good luck, it is a very hard decision to make as we dont really know a huge amount about any of these drugs.
Thanks for the info I checked out the other posts and spent the afternoon doing research...it's a bit scary and promising at the same time. Wish I was better at making important decision!
Thanks again!
~Burbanchick
Thanks again!
~Burbanchick
Hi burbanchick,
Lbradley (Lori) and Cosmobirdie (Rita) both are on tysabri. Rita has written about her experiences and conerns and would be helpful to you. the drug is controversial in that there are a very few recorded deaths as a side effect, and you and dude should be aware of the risks. BUT the people here getting the IV infusions all are happy with their choice.
Good luck with finding answers and making a decision, Lulu
Lbradley (Lori) and Cosmobirdie (Rita) both are on tysabri. Rita has written about her experiences and conerns and would be helpful to you. the drug is controversial in that there are a very few recorded deaths as a side effect, and you and dude should be aware of the risks. BUT the people here getting the IV infusions all are happy with their choice.
Good luck with finding answers and making a decision, Lulu
Here are some of the posts about Tysabri:
http://www.medhelp.org/posts/show/449850
http://www.medhelp.org/posts/show/614591
http://www.medhelp.org/posts/show/661002
http://www.medhelp.org/posts/show/658918
http://www.medhelp.org/posts/show/497025
http://www.medhelp.org/posts/show/597486
http://www.medhelp.org/posts/show/469195
http://www.medhelp.org/posts/show/670887
There are a bunch more discussing tysabri. Just type tysabri into the search box where it says "search this community."
I'm sure many others will answer your post, but hope this gives you some idea.
http://www.medhelp.org/posts/show/449850
http://www.medhelp.org/posts/show/614591
http://www.medhelp.org/posts/show/661002
http://www.medhelp.org/posts/show/658918
http://www.medhelp.org/posts/show/497025
http://www.medhelp.org/posts/show/597486
http://www.medhelp.org/posts/show/469195
http://www.medhelp.org/posts/show/670887
There are a bunch more discussing tysabri. Just type tysabri into the search box where it says "search this community."
I'm sure many others will answer your post, but hope this gives you some idea.
Hi BurbanChick!
Gosh, it's been a year? It just doesn't seem like it!! I don't know anything about the Tysabri, but I know there is someone on here that uses it. I will try to find a post where it is discussed and bump it up for you.
Hope everything else is going good for you two, you are still newlyweds you know!!!!
My Best,
doni
Gosh, it's been a year? It just doesn't seem like it!! I don't know anything about the Tysabri, but I know there is someone on here that uses it. I will try to find a post where it is discussed and bump it up for you.
Hope everything else is going good for you two, you are still newlyweds you know!!!!
My Best,
doni
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