Tysabri comments
Common Questions and Answers about Tysabri comments
tysabri
Lulu is right on the money with her comments and of course, I started down the Tysabri with JC+, and have completed 25 infusions and am between 1.0 and 1.5 (have to look the number up).
As long as you are negative and its helping; hold your ground, but nicely ask your neuro what his rationale is for asking you to stop at the 24 infusion marker?
I am still in shock about the news. I hope that the longer I am on the Tysabri...the better the MRI's will continue to get. Thank you so much for your comments. I hope that those of you who are just starting out on Tysabri can post an even better report on your first post-Tysabri MRI.
Thanks so much for your support - I love talking and reading all the comments on this forum. You all have truly helped me.
I also had a headache and joint pain right after the infusion. Will Tysabri help with tiredness after a few infusions?
I have only had 2 treatments so I can not give any info on how it is effecting my MS yet, but I can tell you I have had nothing but positive comments from people that are taking Tysabri. The concept of the drug is to slow down the progression of MS just like all the other DMD's, but I have been told over and over that after 2-3 Tysabri treatments patients show increased energy and cognitive improvement.
Hi Calliesue - Welcome to our group.
I had 20 infusions worth of Tysabri. I swited to Rituxan because it stopped working for me. While I was getting Tysabri I had no ill effects what so ever. I loved the 'convenience' of monthly infusions v. daily or weekly injections. There are many folks here who have been gatting Tysabri for years with good results.
I was diagnosed with relapsing a remitting ms 1 yr ago. I had a very aggressive doctor that put me on Tysabri infusions even though I had never tried anything else. After research and being so terrified of the brain infection which causes severe disability or death I changed doctors! I have been on Aubagio, the new pill, for 1 month and have not had any problems. I emptied my hair brush the first day to see if I would have hair loss, which there is nothing out of the ordinary.
I was offered Gilenya when I had problems with Tysabri (which turned out to be something other than Tysabri that caused it) and after reading the cardiac warnings and other side effects, chose not to take it.
Tysabri has a wonderful financial support program. They fully donated my first 4 months of Tysabri until I could get an insurance program in place.
Tysabri is considered an "outpatient" procedure and under my insurance, is paid for now at 100%.
Janine,
Wishing you well with the new oral med. Like Daisy girl, I was given the options for Tysabri and Gilenya. I will be doing Tysabri, for 1 year. If not doing what it "should" be doing, I will then most likely start Gilenya.
To be honest right now my doctor is being a butt and rude for the first time ever. He can not even give me this Tysabri. So I would not even see him if I did take it.
Thanks everyone for the comments. I did not know about enlarging the type that is awesome thanks.
I have been on and off Tysabri for 13 months. My new Dr wants me to go a couple more months and see if anything changes. My first treatment after a 3 month break was amazing. I almost skipped out of the office. Since then the last 3 have done nothing as far as improving my overall feeling.
Hey All! New here to posting, but have been reading quite a bit! Great info!
My question is, I had a relapse over the summer, major numbness/weakness on my right side, pain (allydonia) all over, my arm felt cold when it wasn't, major sensory issues. This eventually resolved with the help of Soulmedrol and time. This was my 3rd relapse in a year and a half, so my doc started me on Tysabri in the fall. I have had 5 infusions so far.
-) Following my DX 2 1/2 years ago I went right on Tysabri. I had 20 infusions before I converted to JCV + and the Tysabri stopped working. While I was on it I had no ill effects of any kind.
@CheyTag - Was there ever any reason to dismiss the hemiplegic migraine dx? From what little I know it could account for your symptoms.
Not to mention, that I will soon run out of good sites. I am a bit afraid of the Tysabri. Though she says there have 6 or so episodes of PML, some were Europe where they don't have the Touch program and pt are not followed as closely. She says 83% of users have no flairs in a 2 year study. She will see me monthly or sooner of course if necessary.
Did you read the article and all of the comments that followed?! OMG! Too bad for all of the A-holes comment that basically accused her of faking or being a psycho. That's why I don't tell people that I have MS. I think I would just rather have people think that I'm drunk or clumsy. Apparently that's more believable.
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