I received a call from my neuro's ofice yesterday and they want me to consider tysabri. I'm not too thrilled with the idea. Anyone here currently on it? If so, how many treatments have you had and how are you doing? Thanks! barb
Barb/mystery reader
Diagnosed April 2007
Hi Barb,
While I don't have any personal experience with Tysabri to share, I did find a thread from a while back that might help. I wish you the best.
Co-moderator for Multiple Sclerosis
Allow Healing Well to continue to help others, clink link for details
Hey Barb
My neuro suggested Tysabri for me too, but i cant seem to make the decision. I have an appt Nov 15th and i am supposed to decide. Maybe an interesting thread wil start here, i hope so. My neuro got me in touch with a patient ambassador to talk with but as of yet havent had the time to call him. Maybe your doc can do the same for you. I think he called the drug company and they went ahead and got me a phone number where i can call him at so i can talk to him. I have to call him, but i've been so busy. Its worth a shot. They called me with his number in a few hours.
Good Luck
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta
Hi Lynn, I refused to be rushed into making this decision. My initial reaction is no way! I would really prefer to take a wait and see attitude. It has not been on the market very long. Part of me feels like my neuro wants to use me as his gunea pig. He told me in August that he did not have any patients on tysabri. On the other hand 4 reactions to copaxone in 4 months my be considered a sign of an allergy or intolerance to the drug. I injected copaxone again today and was ok. People seem pretty passionate on both sides of the tysabri argument. I guess its like alot of meds; some do well while others experience problems. My main concern is with the long term effects. Nobody knows at this point.
Barb/mystery reader
Barb/mystery reader
Diagnosed April 2007
Hi Barb,
It's great you are giving the Tysabri careful consideration. I wouldn't let anyone rush you into it if you're not ready.
I am currently waiting to start Tysabri, should be in the next few weeks. First I have to decide how long my washout period will be, Tysabri says 2 weeks is enough, but an immunologist recommended 3 months to my neurologist, yikes. That's a long time to be without any treatments.
I asked my neurologist about Tysabri a year ago, and she said she'd like to see me wait about a year until more people have been on it for a while with no problems. She is now comfortable with it and recommended it to me as Betaseron just wasn't working well enough. In my case, it wasn't much of a decision to make because of the number of relapses I'm having and incomplete recoveries. For me it's totally worth the risk.
If the Betaseron was working great, I'm not sure I'd make the switch.
Good luck with your decision, I'll certainly let you all know if it works for me.
Shar
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron
Hi, I went to an MS support group meeting last week and a lady asked the ms speacialist who was guess speaking about Tysabri, he said that there has been a few deaths from it and thats why they pulled it off the market a while ago. As of now there has been thousands of people on it and they are doing ok. That's the only thing, obviously, that would scare me but if they made changes to it and people are OK, I'd do it.--- Tertle.
Hey Barb,
I tried to e-mail you but, I think, your e-mail thought I was spam lol. It did not go through. I have heard so many good things about Tysabri. My doc thinks I am going well on copaxone so that is where I am staying. If my doc wanted me to try Tysabri I would give it a try. The only deaths assoc. with it were when it was used as a combined therapy. It is supposed to be fantastically effective. The people who are on it seem to love it.
love and prayers,
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
I was strongest when I laughed at my weakness.
Elmer Diktonius
Dear Mystery Reader,
I am currently on Tysabri and that decision was made based upon my two years of relentless positive MRI scans. The last scan, prior to Tysabri, was horrible nothing was working, the "big guns" aka: Tysabri was my only hope to stop the inflamation and to get it under control.
I had an MRI this last Friday and it was absolutely clear, meaning NO WHITE DOTS meaning I am finally in remission after more than TWO years. I have noticed a great deal of improvement in physical and pych. It would take me forever to get my thoughts together to write this. Coordination is a bit troblesome due to the overuse of steroids used during the hard times of the relapse. If you are doing steroids every 3-4 months like I was, stop doing solumedral (I didn't know that was a problem), however I can rebuild those muscles weekend by steroids.
I have been on Tysabri for 4 months now and there are frontrunners in our fight who have been on it for a little over two years. I will continue on the Tysabri path forever, given that my frontrunners are safe. (why not?) Don't be scared about Tysabri, during the trials (when they pulled it) they were using it in conjuction with other MS Drugs and that is why it was not going so well. They don't do that now its a monothereapy and everything has come back possitive that it is indeed a miricle drug for MS (until there is a cure). IMO
Weight the pros and cons for yourself, gather information from reliable sites, most important talk to someone who knows more than anyone about this....your doctor.
I will start you off....
PRO: If its your last option to maintain what you have, and get some things that you lost back (proven to get some regrowth of nervous tissue, Not all but some) you will do it and be glad that you have this choice.
Talk to you doctor more and have your DR. give you information. He is working in your best interest. Dr. Don't mess around and use people as experiments they are helping you, you're scared and that is OK. Going on random sites aren't helpful becuase you may not be getting accerate information.
Bottom line: Its working for me, I hope it works for you.
Let me know if you want to talk more. I got to the Cleveland Clinic