Thanks. I'm going in to talk to her this coming Tues. Maybe she knows if there's a way around it. I don't really want to take Rebif if I don't have to take it in order to start Gilenya or Tysabri. I'm not on any cancer treatment drugs currently (however, I just stopped topical 5-FU chemo yesterday & I don't think the Octreotide daily injections are considered chemo - I don't know). Does Tysabri lower your immune system? Does Gilenya lower your immune system?
I took Tysabri as my first drug, and was + from the beginning. I've been on it for almost 3 yrs and I think it has helped prevent future permanent flares.
I have not heard that Tysabri can lead to more, its job is to help prevent more. It will not, however, reverse anything that has already happened or take away the pesky symptoms we often get.
You can always go off of it but it sure is nice to only worry about it every 28 days!
m 18 and not sure which medicine to choose. I have narrowed it down to Copaxone and Tysabri, but am not sure which one to choose. I have a phobia of needles that I have been trying to overcome so giving myself a shot wouldn't be optimal but I could manage. I was also worried about developing PML with Tysabri but my doctor made it seem as if he would check my bloodwork regularlly and it wouldnt be an issue. I just wanted to know anyones personal experience or opinions on the two.
(It lasts in your system for up to 3 months). I recommend Tysabri to anyone that has MS. It beats daily self injections, and its only once a month.
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 saw my neuro on Friday and in the course of a fairly long appointment and discussion, I asked a lot of questions.
One in particular had to do with oral meds, which we've been told for years are right around the corner. He says yes, they'll definitely be available very soon, but prescribing them will be difficult because of their side effects. Only select patients will get them. I asked if this included those who couldn't tolerate or just didn't do the injections.
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.
s neuro appt as I am sure he is either a) going to try to talk me into staying on Tysabri (noooooo as I hide under the covers) or asking me what my 2nd choice is (???) but am clueless. I KNOW I don't want anything with the word NAUSEA associated to it in any way.
Anyone want to give me their experience. I'm not shot shy, have given too many of those, just being whimy and wanting as few side effects as possible.
I have been on Rebif for 8 years but my most recent MRI shoes several new lesions since 2010 and dr wants me to change therapies. I have ruled out going to another type of injection and don't think I should do Tysabri yet. Does any one have experience with switching over to Tecfidera, Aubagio , or Gilenya ? The new lesions are in the cerebellum and have caused walking and balance issues. Thank you in advance for any advice or info.
The Beta worked well for a while then I started getting reactions from that too. My Dr thought about switching to copaxone but if every other day injections were bad enough then every day injections are probably not a good idea.
My MRI's have not changed the entire time I have been on DMD's, but my condition has deteriorated greatly over these last 2 years. My neuro decided to send me to UCSF to see if Tysabri would work for me.
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